Wednesday, November 28, 2012

Why I deleted this website to start anew...

I started this private site after my name, ID, medical and financial info was stolen, made public in Pastebin, and sold on T-shirts at the DefCon hackers conference.

I never got one penny for the T-shirts and apparel sold and was never reimbursed for the damage done to my computer equipment and mobile devices as a result of HARD CORE hackers.

I was promised the T-shirts and promo ads would be pulled from the event and the black hat hackers known as Lulz, AntiSec, (Sabu and Co.) would take them down and refrain from using my likeness for promotional purposes.

They were not.

They used my name, my likeness, my photos, my social security number, my ID, my address and more to create a slew of fake social media accounts to post insane bullshit across a variety of platforms. 

They even socially engineered my closest friends and family members in various forums to reinforce the charade.

They claimed the T-shirts were for charity and that $1.00 would be donated for every ELyssaD garment sold.

Not only did I not receive any such monies, I am quite certain these fuckwits have no idea how serious it is to impersonate a 501(c)3.

So not only did they make a profit from exploiting every aspect of my life, they harassed my friends, impersonated an ex-cop who has been one of most trusted allies and confidant; threatened friends who dare to speak up on my behalf by calling them on the phone and identifying themselves as law enforcement. ANOTHER felony.

They made a profit. They offered a reward for tittie pics, had podcasts, comic books and sold a line of women's apparel to promote their podcasts, show and of course, make money.

They created multiple fake identities on various social media platforms. They pwned my website, social media accounts, linked in, private forums, etc...  harassed my friends and posted my fathers home address on the internet.

They altered personal documents they stole from my private files, altered them, and had the nerve to put the FAKE documents back in to my web albums and made them public.

ONE LOGIN = ONE FELONY

Destruction of evidence (especially records that pertain to employee benefits is a whole other class of crimes)

These individuals are clearly guilty, and have no problem advertising their skills across the hacker community.

They destroyed my professional credibility with disinformation writing posting ridiculous website entries that present my professional certifications as a practicing therapist to make them appear as if I was the patient not the provider.

65 "people" impersonating me on social media platforms?

My friends, sister, brothers, my mother, and even "Agent Daddy" became targets as well.

I started this site hoping for a do-over.  My name is ELyssa. ELyssaD™ and, for he record I've never done midget porn!

Wednesday, October 24, 2012

The Projects

Just had a funny thought!

You know how much crack I could get this weekend? People are trading electronics in the parking lot for drugs. Too bad I don't smoke crack!

Trying to arrange for *worthy* charity to donate  my stuff to because I don't want these filthy crackheads to sell or trade my beautiful things for drugs when I leave.

I watched the property "monitor" take multiple items out of apartments after they mysteriously disappeared leaving all their belongings behind.

I heard they were deported by 287(g) but they could have easily been murdered or killed like the man who lived down the hall and no one would be the wiser since despite the OBVIOUS "foul play" the landlord didn't even know that the police found his naked dead body in the middle of January after he started to smell a little.

I wonder what happened to his things after they changed the locks three weeks later!

Dumpster diving is common place around here... Sometimes they are looking for drugs or prescription bottles to refill; other times they are hiding from the police inside the closed dumpster in the dead heat of summer...

But as sure as I'm sitting here right now, I watched the "monitor" take a briefcase, dishes, and some other items right out of their apartment into his own home.

Other employees took furniture, electronics and clothing away in their "Academy" Moving Truck (same company that moved me from one crime infested property to another) and the same "COMPANY" that collects the trash and mows the fence (true story)

I'll be damned if these animals raid my apartment the minute they think I'm gone and put their dirty hands on my property so they can get a rock or a few tabs.

I don't even care if sell my second hand TV for diapers at this point. I am *that* desensitized to their needs after seeing how they behave and operate.

One hell of a case study.

Participant observation sucks.

I don't recommend it to anyone who thinks it sounds interesting or exciting. It's not.

You may get a best seller, a movie deal or 15 minutes of fame, but you will pay a price.

I guarantee you will never look at social welfare programs OR human beings the same way again.

They simply don't deserve my help or anyone else's.

I don't regret the years I spent volunteering my time or resources to help the poor or the needy gain access to public resources and government programs, but I can now see that these programs are a total charade and do more damage than good to the community as a whole.

So as my time here comes to a close, I am both better and worse from the experience.

I no longer feel the need or desire to "help" people who don't appreciate the services they receive, and I especially hate the "agencies" who profit off government contracts and rake in millions through public private ventures providing sub-standard care and unfit living conditions to the tune of many millions of dollars.

In reality these "Projects" are modern day slavery and social darwinism and genetic engineering designed to keep the people sick, confused, and completely dependent upon the corrupt system by flooding their "homes" with drugs, crime, chemicals, and black budget babysitters like V who look the other way to keep REPORTED crime rates down so the police and the city don't lose their precious funding.

She gets it. And she wants out!

Thank god I haven't lost too much of myself from this "experiment" to go back to my real life and work on something more worthy of my time and energy than live in disharmony with these animals.

Truth is stranger than fiction.

Now that I have my exit date, all I need is a title that can compete with some of my favorite authors, scientists and visionaries that inspired me to write this book.

Gorillas in the Midst, The Jungle, Nickel and Dimed, Bait and Switch, Orwell's Animal Farm AND 1984, Kafka and the Truman Show all mixed into ONE helluva game changer!

From an "UNDISCLOSED LOCATION" I bid you good night.


 

Sunday, September 30, 2012

Wednesday, August 29, 2012

My name is ELyssa Durant and I approve this message!

My name is ELyssa Durant and I approve this message © 2012

 


My name is ELyssa Durant.  

There are many people on the web who may look like @ELyssaD™ on social networks and forums, but I am the ONLY Elyssa Durant in the United States of America. I may appear strange or different, but what you may not know is that I am a statistical and genetic enigma with a genius IQ and impeccable grammar! 

You may not understand everything I say or do because I may look normal, but like millions of others, I have what's called an autism spectrum disorder. 

What you may not realize is that I am one of the four most brilliant policy analysts to graduate from the top ranked university in political sociology and evaluation and have been trained by the some of the most esteemed experts in academia and have worked with the best of the best in the classroom, in the courts, and in real world settings [aka - IRL]

I received countless hours of rigorous hands on training both in clinical and laboratory settings so I can  evaluate people and programs in the field and implement programs and policies designed to keep you dumbasses in line. Hahahahaa!
I spent twelve years training my mind and fine tuning my skills so that I can evaluate YOU and make a formal assessment clinically, legally and ethically.  

So before YOU judge me or jump to conclusions about who or what I am, be sure to check your facts and always consider the source. 

My name is ELyssa Durant and I approve this message. 

BE AWARE TO CARE... THE INCREASE IS REAL! AutismAid













 ELyssa Durant © 2012 || All Rights Reserved || DailyDDoSe™ @ELyssaD™

My name is ELyssa Durant and I approve this message. © 2012


My name is ELyssa Durant.

There are many people on the web who may look like @ELyssaD™ on social networks and forums, but I am the ONLY Elyssa Durant in the United States of America. I may appear strange or different, but what you may not know is that I am a statistical and genetic enigma with a genius IQ and impeccable grammar!

You may not understand everything I say or do because I may look normal, but like millions of others, I have what's called an autism spectrum disorder. What you may not realize is that I am one of the four most brilliant policy analysts trained by the some of the most esteemed experts in academia.

Trained to evaluate people and programs in various clinical, legal and psychological settings by the best of the best at THE top ranked program in the United States! I spent twelve years training my mind and fine tuning my skills so that I can evaluate YOU and make a formal assessment clinically, legally and ethically.

So before YOU judge me or jump to conclusions about who or what I am, be sure to check your facts and always consider the source. My name is Elyssa Durant and I approve this message.

Just me,

e
@ELyssaD™


Thursday, August 23, 2012

Using TRAPWIRE to investigate misconduct in the Police State?

Good Cop, Bad Citizen? As Cellphone Recording Increases, Officers Are Uneasy

Posted Mar 1, 2012 4:40 AM CDT
By David L. Hudson Jr. from ABA Law Journal

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image

A plainclothes Maryland state trooper approaches speeding suspect Anthony Graber, who captured the encounter with a camera atop his motorcycle helmet and later posted the video on YouTube.
Walking past Boston Common, the city’s august park, in 2007, attorney Simon Glik noticed several police officers arresting a young man. Glik heard another bystander say he thought the police were using excessive force. So he pulled out his cellphone and began shooting video of the incident.



After arresting the young man, one of the officers turned to Glik, saying, “I think you have taken enough pictures.” When the officer asked Glik whether his audio recorder was on, Glik acknowledged it was. Glik was then arrested for violating a state wiretap law and two other state offenses.
The charges were subsequently dropped, but for Glik that was just the beginning. He filed a constitutional tort suit alleging violation of his First and Fourth Amendment rights. The officers filed a motion to dismiss, contending they were entitled to qualified immunity, enabling government officials to avoid liability if they don’t violate clearly established constitutional or statutory law. But a federal district court denied the officers’ claim.
And last August, the 1st U.S. Circuit Court of Appeals at Boston ruled in Glik v. Cunniffe that the officers violated Glik’s clearly established constitutional right to video-record the police performing their duties in public.
“Our recognition that the First Amendment protects the filming of government officials in public spaces accords with the decisions of numerous circuit and district courts,” the panel wrote. The case went back to the federal district court and the parties are in discovery.
With the ubiquity of cellphones, the ease of video-recording and the availability of such websites as YouTube, people can respond quickly to police incidents and broadly circulate the recordings.

POINT AND SHOOT

“The prevalence of cellphone cameras with high enough resolutions for people to record the police and then be able to disseminate it over the Internet” is a major reason for the video-recording, says Boston attorney Jeffrey P. Hermes, director of the Citizen Media Law Project.
But law officers are often uncomfortable. “Many officers are also uncomfortable that their activities might be displayed on the Internet and otherwise widely distributed,” says Portland, Ore., lawyer Bert P. Krages, who specializes in the area. “Some also have the impression that photography presents a security risk and are acting according to a post-9/11 mentality.”
Adds Krages: “Law enforcement personnel are still grappling with the idea that ordinary citizens have the right to take images, whereas previously such photographs and videos were taken by professionals employed by traditional media companies.”

“When you talk about citizen journalists, there is also a slightly different relationship between those individuals and the police and the relationship that many mainstream journalists have with the police,” Hermes says. “Those mainstream journalists who cover the police have developed an understanding with the police that many private individuals have not.”
The 1st Circuit found it irrelevant that Glik was a private citizen rather than a professional journalist. “The proliferation of electronic devices with video-recording capability means that many of our images of current events come from bystanders with a ready cellphone or digital camera rather than a traditional film crew,” the court said. “Such developments make clear why the news-gathering protections of the First Amendment cannot turn on professional credentials or status.”

CASES IN PLAY

Glik is far from the only case. The American Civil Liberties Union of Illinois also has a case pending in the Chicago-based 7th Circuit that challenges the constitutionality of the Illinois Eavesdropping Act, as it applies to making video and audio recordings of police performing their public duties.
ACLU of Illinois v. Alvarez, filed in August 2010, claims the broad nature of the Illinois law may expose ACLU members to arrest. “The act makes audio-recording police officers in these circumstances a felony,” the complaint states. “Due to a reasonable fear of arrest and prosecution, the ACLU is restrained from engaging in this conduct.”
A federal district court dismissed the case as moot in October 2010 and the ACLU appealed. Oral argument took place in the 7th Circuit last September.
In May 2011, Emily Good was arrested in Rochester, N.Y., for taking video of police conducting a traffic stop on the street in front of her yard. According to published accounts, police told her they didn’t feel safe with her there. She was later taken into custody.



In April 2010, Anthony Graber faced an indictment in Abingdon, Md., after he recorded a state trooper giving him a ticket and then posted the video on YouTube. Graber, a 25-year-old staff sergeant for the Maryland Air National Guard, was riding his motorcycle down Interstate 95. On top of his helmet was a camera he often used to record his journeys.



The camera was rolling when an unmarked gray sedan cut him off. A man wielding a gun emerged from the driver’s side, yelling at Graber and ordering him to get off his bike. Only then did the state trooper identify himself and holster his weapon. Graber was cited for doing 80 in a 65-mph zone.
Graber accepted his ticket, then posted his video. A few weeks later, he was awakened by six officers raiding his parents’ home, where he lived with his wife and two children. He learned later that a grand jury indictment alleged he had violated state wiretap laws by recording the trooper without his consent.
“Police justifications come in a few different flavors,” Hermes says. There are security concerns and charges of violating wiretap laws, which vary by state. But police also claim they are covered by qualified immunity. The doctrine shields government officials from liability for the violation of an individual’s federal constitutional rights—so long as the official’s actions, even if later found to be unlawful, did not violate “clearly established law.”
David Milton, a Boston-based attorney who represents Glik, points to the 2010 case Kelly v. Borough of Carlisle. There the 3rd Circuit at Philadelphia granted qualified immunity to a police officer who arrested a passenger in a vehicle he had pulled over for speeding. The officer discovered the passenger was video-recording him and claimed the passenger violated Pennsylvania’s Wiretap Act. The appeals court determined that the officer was entitled to qualified immunity because he reasonably believed he had the authority to arrest the passenger.
Part of the problem, Milton says, stems from a 2009 U.S. Supreme Court decision, Pearson v. Callahan, in which the justices said lower courts had the option of deciding cases based on whether the law was clearly established, without first determining whether there had been a violation of individual constitutional rights.
But Glik altered the balance, saying there is a clearly established right to monitor the police.
“On the First Amendment issue, the concept that there is a clearly established right seems consistent with prior case law in the 1st Circuit and the experience of media recording in public as long as there have been video cameras,” Hermes says. “For decades we have had television stations recording in public and not facing sanctions.”
 Adds Milton: “What is so good about the 1st Circuit decision in Glik is that the judges recognized that even though there may not be a prior case of a police officer in a park with a person on a cellphone, basic long-standing First Amendment principles clearly apply to the situation even though it involves new technology.”
Although there is no Supreme Court ruling that finds a right to record in public, Hermes says, many believe there is a clearly established constitutional right to monitor the police.
“Police serve a vital function and most law enforcement officers are very decent people who should be commended,” Krages says.

“However,” he adds, “the police are in a position to grossly abuse civil liberties, and the bad ones cause a lot of harm. In many situations, a determination of what actually happened comes down to deciding whether the officer is more credible than a suspect or citizen. Consumer-level imaging, particularly video, has captured images of officers acting very inappropriately in all sorts of situations.”
Learn more about Professor Hudson here... http://law.vanderbilt.edu/hudson or visit his website at http://www.davidlhudsonjrbooks.com/index.html

glad to know ya!

^ed

David L. Hudson Jr. is a scholar at the First Amendment Center where he writes for the Center’s website, speaks to the media and lectures on a variety of First Amendment issues. He is the author, co-author or co-editor of more than 35 books, including Let The Students Speak: A History of the Fight for Free Expression in American Schools (Beacon Press, 2011), The Encyclopedia of the First Amendment (CQ Press, 2008)(one of three co-editors), The Rehnquist Court: Understanding Its Impact and Legacy (Praeger, 2006), and The Handy Supreme Court Answer Book (Visible Ink Press, 2008). He has written several books devoted to student-speech issues and others areas of student rights. He also serves as a First Amendment contributing editor for the American Bar Association's Preview of United States Supreme Court Cases. Professor Hudson teaches First Amendment and Professional Responsibility classes at Vanderbilt.

LEARN MORE ABOUT ME HERE. Powers That Beat
..


Using TRAPWIRE to investigate misconduct in the Police State? 

by Elyssa Durant, Ed.M. Policy Analyst and Citizen Journalist with a Camera Phone


I was trying to de-escalate the situation with the local Police Department since I realize how much danger this city is in given recent laws to persecute Muslims and people who were not born in the United States 287(g)
However, after watching the violence erupting around me, knowing that I am the primary target [thanks to COINTELPRO agent provocateurs] and being questioned by the police about my twitter stream, I really don't give a fuck.
These people have no idea how they are being manipulated by disinformation agents, toxic living conditions and a system that is far more corrupt than even I imagined.
The "monitor" who controls the surveillance cameras clearly has some special deal with Metro because despite all the violence that broke out, he finds the time to threaten, harass and stalk me ignoring the fact that several residents threatened me after spooks came in and told people to stay away from me or they will "get in trouble"
WHAT THE FUCK? I have no history of violence and have never even been in a fight,I weigh 124 pounds and all these people are afraid of me? Do I "look dangerous" because I am quite certain it won't be long before someone makes another attempt on my life.
Much like Trayvon Martin, I was told police were on there way after a man threw a brick through my window and then chased me down the street.
I was on the phone with 911 the whole time screaming "HELP, HELP, HELP" yet the police claim they did not want to waste radio space to update status of my call to a Code 3. Are you fucking kidding me?
911 told me to return to the scene of the crime where I was assaulted a second time, and the cops didn't even bother to arrest him or take witness statements. In fact, the officer would not even step out of the car to speak with me because he did not like the way I was dressed.
Because no action was taken against the man that assaulted me and vowed to kill and my father (who just happens to be a former Fed) I constantly carry my iPhone because the cops claim they did not have enough evidence to arrest this man. They never bothered to check the surveillance camera and did not take statements from additional witnesses.
They did, however take issue with the fact that I placed a video on YouTube and were even more upset that I contacted a former colleague in the Mayor's Office who then requested an investigation. They sent two Lieutenants to my home; one was aggressive and disrespectful and was more interested in what book I was reading and my website than the facts of the case.
I was told that they would follow up with the other witnesses who would corroborate my story, and that a Special Operations Unit and Gang Unit would be contacted regarding the racial comments that became commonplace every time I left the apartment.
One man hung up Nazi flags, another started praying in Muslim and all hell broke loose in the neighborhood. I became a target because I was white in a Black neighborhood, and apparently that alone was enough to incite hatred among the other tenants and I feared for life each time I left my apartment, so the police told me NOT to leave my home. THAT IS OUTRAGEOUS.
The other tenants became more and more abusive and violent since they now had a new sense of entitlement because they knew the police would not take action.
It is worth noting that even after I left, the violence continued to escalate and one women was stabbed and several other injured in fights that broke out in the hallway. The cops still did not arrest the people who continue to live in the neighborhood, and some of them have shown up here at my new apartment to harass me and spread rumors.
The neighbors here have suddenly became abusive and overly concerned with my religion and it seems the writing is on the wall. They think my healthy paranoia is "suspicious" and I think their behavior is outrageous.
They constantly stand outside my window and scream at me and the "monitor" called the police on me after he threatened me and told me I was not allowed to go near a "white car." There were SIX white cars, two of which have no tags, so how am I to know which white car is the one who stopped me at the mailbox and told me that two men were knocking at my door and were here to beat me up?
I may very well be the next Treyvan Martin and if so, so be it. I am old enough and experienced enough to know that these people do not see the bigger picture~ that they are being used to as examples to bring down the police state and usher in the New World Order.
I leave these notes because I do not know if I will get shot at today, tomorrow or next week, and I think it is important to let people know that I have spent my entire life studying gang violence, and have fought hard against police corruption and discrimination so regardless of what happens to me, I do not want my work (or experience) to be in vain.
I am one of the good guys, and if you can't see that by now... then take some time to look through some of my publications which are systematically being removed from the internet by groups like Anonymous, Lulz, and AntiSec.
This breaks my heart, but I am fighting a losing battle. I am starting to question my commitment and given the communities response~ I am not sure if they are worth the sacrifice.

That's all for today. This is the Daily Dose for March 29, 2012.

Just me,

e

@ELyssaD 


ANOTHER POST THE POLICE TOOK ISSUE WITH:

Metro Nashville Police Department continue to cover up crimes by failing to follow established code of conduct in lower income neighborhoods.

Some power hungry police officer demands to search my iPhone after he notices I am video taping the MNPD who took three hours to respond to multiple neighbors call 911 after witnessing multiple violent assaults against two women and one man on Monday evening.

I called 911 after two people approached my window threatening my life for being a "cracker Jew bitch" and threw a brick through my window where I was working on two projects about Cointelpro as a driving force behind the Occupy movement that is being funded by The American Nazi Party and the Lucis Trust.

I was interviewing someone who had been involved with Nazi medical experiments and how it effected his four children who suffer with a variety of neurological and psychological problems that are typical of victims of Mengele's subjects.

I had just received notification from the copyright office (USTPO) in Virginia that my submission was approved and was thrilled to learn that my publications and identity would be protected under trademark and copyright laws since I received several take down notices from the police and google that my site was in danger of being seized due to the number of complaints received about the content: THE TRUTH.

Ironic when I noticed which posts were being removed due to the sensitive nature (and my vast knowledge) about the true purpose of organized, controlled opposition as a driving force to escalate domestic unrest designed to incite violence justifying a Police State ushering in the New World Order.

This is not the first, second, or even third time I have been stopped by undercover police or random uniforms knocking on my door to search my cell.

One cop came running after me, demanded to see my cell phone and after running my license to check for warrants (which seemed extreme) and finding none, he wrote up an incident report for "suspicious behavior" for video taping a crime scene. 

He not only searched my cell phone without a warrant, but proceeded to DELETE crime scene photos.  

THAT IS A VIOLATION OF BOTH THE FOURTH AND THE FOURTEENTH AMENDMENT, AND THAT'S ABOUT AS SERIOUS AS IT GETS. 

RELEVANT HISTORY THAT HAS NEVER BEEN MADE PUBLIC:

Despite being a "confidential" informant in an undercover sting operation that went bad [way bad] in 2009 at the request of the Mayor's Office and several police officers not to be named at this time, I became an informant when I saw people selling prescription drugs to teenagers in DCS custody.  

I wanted it to stop, and at the police sergeant's request, I agreed to work with the Crime Suppression Unit to keep these kids from inevitable path to lifelong addiction and criminal behavior.

 I was instructed to report on the illegal activities, which included taking down license plates and traffic patterns indicative of illegal drug sales.  

After lengthy discussions with my contact in the department,  the majority of all follow up communications were via e-mail on my cell phone so my neighbors would not hear me discussing the situation.

That fateful day my cell was jammed and hacked, I was unable to receive or send critical communications to alert me that shit went bad, and my cover was blown.

None of this ever made it though the network, and the e-mails reside on a microchip that is an UNDISCLOSED LOCATION with about 40 back ups at the ACLU, FBI, and Nightly News just in case something happens to me before I transfer out of here into a safer jurisdiction.

That was the first, but not the last time my cell was jammed and hacked.

I could not receive communications or directions from the crime suppression unit, and I wound up being assaulted and hospitalized after one of  the bullets hit my window. 

I was promised a police escort and advanced warning, but they never showed up, until they did with automatic assault rifles at my front door. 

It was too late.

I have never disclosed those emails, however they have since been accessed by hackers from Lulz, AntiSec and whoever accessed my computer when I was out of town this time last year. 

How do I know? Because the PC hadn't been turned on in several years and the last ten documents opened were my detailed call records and an e-mail to a certain politician who also had his cell phone records searched and used against him in an ugly court battle and political campaign.

SO, they're you have it folks The truth, the whole truth and nothing but the truth, so help me [aliens]

Now, an obvious target by the police department, I am constantly harassed, stopped, searched, interrogated or subjected to "unofficial complaints" of harassment that always seem to follow a pattern I know all too well.

SO, when the investigator tries to tell me that I would not make a good witness since I called 911 from my closet AFTER the brick came through my window, what they mean is, we will make sure your credibility is destroyed through false reports, and constant harassment should you ever decide to sue us for police misconduct.  

Well, fuck you!

After yet another incident where the police failed to respond to a life threatening situation in a timely manner, insult and intimidate me, three times in 24 hours, then ultimately release the suspect claiming there is not enough evidence??

I CALL TRAPWIRE!!
When you refuse to take witness statements; reveal your name or badge numbers, and another violent criminal continues to terrorize me for months on end, and the police refuse to review the live feed trapwire video that would show beyond any shadow of a doubt that this man assaulted me AND three other individuals within minutes of being released?

No evidence? Check the fucking surveillance cams just above the the scene of the crime.

Hell, check MY surveillance cam! I don't leave home without it!


Just me,

e
@ELyssaD


hatecrimes6.pdf Download this file


http://ise.gov/sites/default/files/ISE_Annual_Report_to_Congress_2012.pdf


ISE_Annual_Report_to_Congress_2012.pdf Download this file

PSA Petition @Penn 23 year old with Autism denied heart transplant by @ELyssaD © 2012

Monday, August 20, 2012

PSA: Petition @Penn to reconsider Man with #Autism denied transplant by Elyssa Durant, Ed.M. @ELyssaD © 2012

PSA: Petition @Penn to reconsider Paul Corby, 23 year old with autism denied transplant @ELyssaD  © 2012






MAKE A DIFFERENCE
Petitions by Change.org|Get Widget|Start a Petition »




Abstract 

This paper will discuss the major historical efforts to legislate organ transplantation in the United States. In addition to discussing the problems found within the current system of voluntary donation, this paper will provide an overview of three alternative approaches: (1) changing the legal definition of death to include anencephalic infants as potential donors (2) commercialization, and (3) the presumed consent model of organ donation.

Introduction

Several years of lengthy and scholarly debate were taken into careful consideration before Congress drafted the first version of the Uniform Anatomical Gift Act in 1968 (UAGA). Despite this extraordinary undertaking, the new legislation failed to live up to its expectations.[1] "The UAGA (1968) made a variety of advances in the law of organ donation, standardizing the process and removing some uncertainties about the scope of permissible donations," (Jaffe, 1990).

The UAGA failed in its mission to develop and implement standardized procedures involved of organ procurement and donation.[2] Problems with ineffective implementation of the Uniform Anatomical Gift Act undermined the intended purpose of the legislation, and it has been difficult to regulate compliance with the procedures set forth by the UAGA. Ultimately, the legislation did not have any noticeable effect on the supply of transplantable organs, and policy makers continue to look for a solution to the severe shortage of organs in the United States.

The Problem Statement

The United States is in the midst of a severe shortage of transplantable organs. Over the last several years, medical technology has advanced rapidly enough to make organ transplants a "standard" procedure. The medical community has been unable to meet the demands of the growing list of individuals who would benefit from transplantation.

New immunosuppresive therapies, e.g., cyclosporine, vastly improved the survival rate for transplant patients, making organ transplantation a relatively safe medical procedure. Since transplant surgery has achieved such remarkable success, a growing number of patients and physicians feel transplant surgery would be the preferred medical treatment. As a result, the number of people waiting for a suitable organ to become available has grown exponentially. There are currently over 55,000 people registered with the United Network of Organ Sharing (UNOS) waiting for a human organ to become available.[3] The number of people on the waiting list is expected to increase steadily as the baby boom generation ages, but only a small percentage will be fortunate enough to benefit from the recent advances made in the field of organ and tissue transplantation.

The greatest challenge facing the transplant community is the lack of available organs. Until we find a way to increase the number of voluntary organ donors, 10 patients will die each day waiting for an organ to become available in the United States.

Scarcity of Medical Resources

It is difficult to justify and understand the cause of the American organ shortage. Enough healthy organs become available each day to meet the needs of the medical community, yet only a fraction of those will be donated for medical purposes. The number of organ and tissue donors has not kept pace with the number of patients who could benefit from their healthy organs. According to Carol Beasley, managing director of the Partnership for Organ Donation in Boston, the number of people waiting for organs jumped 300% between 1988 and 1995.[4] The number of donors increased by only 30% over the same time period.[5]

Under the current system of voluntary donation, the medical community only recovers a fraction of the human tissue and organs suitable for transplant. Legislative efforts to alleviate the shortage by removing the obstacles which hinder organ recovery have failed. In 1996, almost 4,000 people died waiting for an organ to become available for transplant.[6]

Because the demand for organs far exceeds the supply, policy makers, legal scholars, and the medical community have debated over the best way to increase the supply of scarce medical resources without jeopardizing the rights of potential donors and their families.

Allocating Scarce Medical Resources

Because of the severe shortage in transplantable organs, much of the public policy efforts in this area have focused on setting standard procedures to ensure equitable distribution. Concerns over the fair allocation of organs prompted the American Medical Association to publish a committee report outlining the medical criteria involved in the identification process for potential donors and recipients.

The issue of genetic compatibility has also raised questions regarding the proper distribution of organs among minority populations. These individuals are much more likely to receive organ transplants from their own community. This certainly seems fair in light of the violence and social conditions in which they live. Veatch (1989) discusses the distinction between social worth and social judgement that is often subjective.

Medical criteria used to allocate organs contain elements of social worth and moral judgment (Veatch, 1989). For example, should we consider AIDS patients as potential candidates for transplantation? How long must an alcoholic be sober before they are eligible for a new liver? This seems like a reasonable question, but it certainly raises questions about social worth. There is a fine line between social behavior and social worth.

The allocation of scarce medical resources is neither unique nor uncommon among medical and legal professionals. A few highly publicized transplant cases helped bring the issue of allocation to the forefront of American consciousness. The American public began to question the fairness of the methods used to match donors with recipients when Governor Casey was moved to the top of the waiting list for a transplant in 1994. One year later, Mickey Mantle was hospitalized, and the public began to speculate on the objectivity of the medical criteria used by transplant centers. Mickey Mantle received a liver transplant 48 hours after being placed on the waiting list.

Press coverage helped bring the issue to the front burner and there was a sudden surge in the number of organs donated by the public. But these highly publicized cases also raised questions about the methods used in the allocation of donor organs. Americans became skeptical of the current system and questioned the ethical basis of the criteria used by UNOS in the allocation of organs. Some felt that Mantle who had been an active alcoholic for most of his life did not deserve a new liver.

Unlike most medical conditions, individuals needing liver transplants are often viewed as responsible for their poor health. Some people believe that alcoholics should not be given equal consideration for medical treatment compared to other (non-alcoholic) patients needing liver transplants. Although UNOS maintains a position that drug and alcohol abuse are not taken into consideration in the allocation process, alcoholics are frequently ruled out because of additional health risks associated with alcoholism and the alcoholic lifestyle. "The patient's style of living might be taken into account, so that an active alcoholic in kidney failure might be excluded on the grounds he has a poor life expectancy even if his new kidneys do not fail."[7]

The medical community has adopted a set of standard criteria used to evaluate and identify potential recipients for available organs. The agreed upon medical standard is based strictly on medical criteria, and the transplant community has publicly denounced measures of social worth or utility in the identification of suitable candidates.

Since organs are considered such a rare and precious resource among the medical community, most transplant centers require patients to undergo a lengthy evaluation before being considered a potential transplant candidate. Preoperative evaluations are used to evaluate the patient's likelihood of survival. A closer look into this process reveals the subjective nature of the evaluation, which appears to contain a number of quality of life questions and measures. Candidates may be disqualified for transplant surgery based upon quality of life measures, which tend to be socially biased. Patients who have sufficient monetary resources and social support networks are preferred to patients who are socially isolated or unmarried.

"The subjectivity of the medical criterion becomes even more blatant when quality of life is taken into account. Sometimes quality of life has become a code word for nonmedical considerations. A wealthy intellectual might be said to have a better quality of life than a mechanic. Even if quality of life is limited to these more narrow medical considerations, inevitably subjective judgements must be made."[8] 

The subjective nature of the criterion used to evaluate quality of life could potentially be used as a proxy for social worth.[9]

The Quality of Life Index evaluates the following:[10]

1. Health and functioning
2. Socioeconomics
3. Psychological well-being
4. Family life 

Quality of life measures are considered valid indicators of surgical success, but they clearly contain some measure of social judgement. This provides a good illustration of the complex interaction between medical and social criteria used to evaluate potential transplant candidates. "Even assuming that benefits are limited to "the medical" and that these benefits that are taken as the criterion, the problem of subjectivity is not eliminated."[11]

The evaluation process is inherently subjective, and it is not always possible to distinguish medical criteria from social judgement. Even the act of assigning objective medical criterion contains subjective interpretations. "In principle, medical facts alone cannot determine which of these candidates medically benefits more by a transplant. 'Medical benefit' is inherently a subjective notion that will require value judgements by the one allocating the organ."[12]

Allocation disputes are not uncommon, and external agencies are sometimes asked to intervene. The medical community is in general agreement regarding the criteria used in the allocation of organs, but the actual methods used is unique to each transplant center.[13] Regional review committees were recently established in order to monitor consistency at the national level.[14]

The standard medical criteria used to identify the best recipient includes:[15]
1. Geographic weighting
2. Medical urgency
3. Organ Compatibility
4. Waiting time

Until we can significantly increase the supply of voluntary organ and tissue donors, we are doomed to debate the most equitable method of distribution, and the public will continue to look to the government to regulate the evolving organ industry. Despite the fact that the American public claims to support more active procurement procedures, there is an overwhelming apathy among the general population to take active steps in the event of death.[16]

The Uniform Anatomical Gift Act of 1968

Shortly after the first human heart transplant was performed in 1967, Congress began to think about the potential benefits of anatomical gifts. After much deliberation, Congress passed the first version of the Uniform Anatomical Gift Act in 1968 (Veatch, 1989). The UAGA was intended to increase public awareness of organ transplantation and to stress the need for people to sign organ donor cards. The UAGA also granted immunity to any physician acting in compliance with the UAGA.

The UAGA passed in 1968 represents the government's first, but not last attempt to increase the organ supply through federal legislation. By recognizing the medical utility of anatomical gifts and organs, the medical community successfully convinced Congress to assist them in the recovery of human organs and tissues for medical research and transplant procedures. Unfortunately, the 1968 legislation had virtually no impact on the supply of organs in the United States, so they took a different approach and passed the National Organ Transplant Act in 1984.

The National Organ Transplant Act of 1984

The National Organ Transplant Act of 1984 (Pub. L. 98-507) provided federal funds to organ procurement agencies, created a national organ-sharing network, and explicitly prohibited the sale or purchase of human organs.[17]

The National organ Transplant Act (NOTA) included specific guidelines for the establishment of a national network to oversee organ procurement centers and provided them with federal funding. The legislation created the National Organ Procurement and Transplantation Network (OPTN), which was established to maintain a national database and waiting list for the 69 organ centers in the United States. The United Network for Organ Sharing (UNOS) is under contract with the federal government to carry out the duties as the designated OPTN.[18]

The purpose of OPTN was to monitor and assess the activity of three main components involved with organ donation and transplantation. In addition, OPTN collects and maintains statistical data for (1) transplant centers, (2) organ procurement organizations, and (3) hospital participation.[19] Federal law requires the OPTN to submit all allocation policies for review by the Secretary of the Department of Health and Human Services.

Second, the National Organ Transplant Act of 1984 created a federally funded Task Force to conduct a detailed investigation into the current system of donation. The Task Force was to identify the major problems encountered by organ procurement agencies, and recommend ways to improve the current system.
Findings of the Task Force on Organ Transplantation

Congress created a Task Force on Organ Transplantation to conduct a detailed investigation into the current problems associated with organ procurement and transplantation. In 1986, the Task Force reported their findings in "Organ Transplantation: Issues and Recommendations." The 1986 publication identified problems in the current system of voluntary donation. The Task Force reported on the medical, legal, social, ethical and economic components of organ procurement and transplantation.[20] They concluded that the problem lies within the lack of altruistic donors and suggested appealing to a public sense of community and social responsibility.[21]

Required Request Laws

Required Request laws mark the last serious attempt by the federal government to improve organ donation laws in this country. 1986 federal legislation mandating "Routine Inquiry" of potential organ donors was required in all hospitals receiving Medicare or Medicaid funds. Earlier legislation allowed for the removal of organs in persons over the age of 18 if they had signed an organ donor card. Medical professionals rarely remove organs without consent from a family member. Although federal law protects individuals acting in good faith, obtaining consent from the next of kin has proven to be a major obstacle in voluntary donation. Medical personnel are reluctant to discuss the need for organs upon an individual's death.[22]

It has been suggested that this is a reflection of their personal discomfort with the issue of death and dying[23]. Perhaps they fear being seen as callous or disrespectful of the recently deceased. Fentiman offers several possible explanations including, "a lack of education or cultural sensitivity on the part of health care workers, a concern about the appearance of overreaching a bereaved family, fear of legal liability, and the health care professional's own discomfort with death." The same logic has been used to explain why a number of willing donors had not signed a donor card or notified their next of kin. Fentiman (1993) attributes this to a psychological inability to confront ones own death, and this helps to explain the absence of signed donor cards among patients who claim to support voluntary donation.

The Hastings Center Report

A few years later after passing NOTA, the Hastings Center issued a report describing obstacles found within the system of voluntary organ donation. The Hastings Center Report (1986) concluded in order to develop a more effective donation system, each of the following problems must be addressed:

The key problems that hinder organ donation include:

1. Failure of persons to sign written directives.
2. Failure of police and emergency personnel to locate written directives at accident sites.
3. Uncertainty on part of the public about circumstances and timing of organ recovery.
4. Failure on the part of medical personnel to recover organs on the basis of organ recovery.
5. Failure to systematically approach family members concerning donation.
6. Inefficiency on the part of organ procurement agencies in obtaining referrals of donors.
7. High wastage rates on the part of some organ procurement agencies in failing to place donated organs.
8. Failure to communicate the pronouncement of death to the next of kin.
9. Failure to obtain adequate informed consent from family members. 

More than a decade has passed since these issues were first identified, and a number of states, including Tennessee, have implemented their own versions of the Uniform Anatomical Gift Act.[24] Regardless of this repeated effort, legislation has not helped to increase the number of organs available to the medical community. The problems enumerated by the Task Force and again in the Hastings Center Report have not improved since they were first identified in 1986.

Although the medical, academic, and legal communities have fragmented opinions regarding the best approach to the scarcity problem, they are all in agreement regarding the fundamental issue of allocation: the problem of allocation and donation is inextricably intertwined. If more Americans became voluntary donors, the medical community could recover a greater percentage of available organs for transplant. In turn, we would no longer need to debate and inquire about the equitable distribution of organs since there would be enough organs to supply each of the 40,000 Americans who are currently on the waiting list.

Recently, there has been a strong national movement to create a national database without giving preferential treatment certain regions of the country. Should scarce resources be distributed to the victim's community before becoming available to the general population or distant transplant centers?

Despite numerous attempts to address these problems, they remain unresolved under current law. Neither version of the Uniform Anatomical Gift Act, (1968; 1987) nor the National Organ Transplant Act of 1984 (NOTA) had any substantial effect on the severe organ shortage in the United States. Thousands of individuals will die each year while waiting for an organ to become available unless we can agree upon an alternative solution to the crisis at hand.

Commercialization 


A popular policy alternative to the current system of altruistic voluntary donation is a commercialized system of organ donation. It is believed that providing financial incentives for voluntary compliance would encourage people to take the initiative to become organ donors.

Under current law, it is illegal to buy or sell human organs, leaving altruistic donation as the only hope for people currently waiting for an organ to become available. The commercial sale of human tissues is a direct violation of the National Organ Transplant Act of 1984.[25] NOTA of 1984,[26] makes it "unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce."[27] This is punishable under criminal law and carries a prison term as well as a $50,000 fine.[28]

Arguments in favor of a commercialized system point out that everyone profits in the organ procurement industry except for the patient (Fentiman, 1990; Banks, 1995). Banks (1995) suggests that by allowing the commercial sale of transplantable organs, a significant number of people would opt into the system. A number of countries including Japan, currently allow the sale of human organs, but a report by the UNOS Ethics Committee expressed concern about the slippery slope problem which may result in the sale of human organs on the black market.[29] In addition, the committee was concerned that some people may actually be less inclined to donate if financial incentives were offered since it would minimize the benefits of altruistic donation.[30] Some individuals may object to the idea of commercialization simply because they believe anatomical gifts should be altruistically motivated. Alternative methods of compensation, such as provisions for a decent burial may be one option since it appears to maintain the integrity of anatomical gifts.

UNOS recommended a regional trial of commercialization since the ultimate effect on the number of donations is unknown.[31] If commercialization turns out to be an effective solution to the profound shortage of transplantable organs, Congress would have to amend current law and establish regulatory guidelines to prevent abuse in the system. Additional regulations would be needed to protect vulnerable populations from exploitation in a commercialized system of organ transplantation and donation.

One convincing argument is the obvious financial compensation provided for the surgeons and transplant centers. In some regards, it only seems fair that the donor receives some financial compensation for his or her participation, offering a system which benefits a third party, e.g., a charity or grandchild who might receive a voucher for college tuition, seems acceptable to most people.

If the United States were to switch to a commercialized system, more people may begin to doubt the fairness involved in allocating organs. Additional findings by the Gallup Organization revealed that only 12% of the survey respondents reported they would be more likely to donate their organs under a commercialized system.[32]

This may be due, in part, to a ceiling effect since such a large percentage of respondents indicate they are willing to donate their organs at the time of death. Survey respondents also reported being concerned with the effect the sale of organs might have on the length and/or quality of treatment they received in the event of a traumatic injury. They were fearful that medical professionals might discontinue medical treatment in order to begin harvesting organs.[33]

Those opposed to the market system feel that certain segments of the population are especially vulnerable to exploitation in a commercialized system.[34] Deutsh (1997) describes problems specific to Medicaid populations, and it seems probable that some segments of the population would feel threatened by such a system. Vulnerable populations already experience disparate treatment under the current system, and it is reasonable to expect poor or disabled individuals would suffer disproportionately in a commercialized system. A recent survey of attitudes regarding organ donation and transplantation revealed that respondents felt wealthy individuals are more likely to receive an organ transplant.[35]

Presumed Consent 


The second proposal has considerable support from a large segment of the academic community. This is based upon the fundamental belief that human organs are a community resource, and should be treated as community property at the time of death. This basic assumption is critical to understanding and accepting a model of presumed consent.

Jesse Dukeminier, a lawyer, and David Sanders, a physician, first proposed a system of presumed consent in 1968 (Veatch, 1989). Dukeminier and Sanders adopted four basic principles as the foundation for their model of presumed consent:[36]

1. Making removal of useful cadaver organs routine.
2. Removing organs in a way that does not burden the bereaved.
3. Honoring objection by the "donor" made during his lifetime but also honoring his express wishes even if next of kin objects.
4. If donor neither objects nor expressly assents, honoring kin's objection to organ removal. 

For this reason, many legal and medical scholars have proposed federal legislation based upon the notion of presumed consent (Dukeminier & Sanders, 1968; Fentiman, 1990). The presumed consent model views organs as community property and assumes that everyone is an organ donor unless they have opted out of the system.

The proposed model of presumed consent recognizes the need to protect individuals who do not wish to donate their organs. These people would be given ample opportunity to opt out of the system. Everyone opting out of the system would be kept on file in a national database which must be checked prior to the removal of any organs from potential donors. Fentiman suggests the following as opportunities for people to opt out of the presumed consent system.[37]

1. When obtaining or renewing a driver's license.
2. On filing an income tax return.
3. When applying for welfare disability or other governmental benefits.
4. On every visit to a hospital or doctor's office.
5. When a health care provider explicitly requests a patient to consider donating her organs.
6. When executing a living will or health care proxy.
Legislation supporting the presumed consent model would reduce awkward discussion between medical professionals and the families of the deceased since next of kin would not be notified prior to organ procurement.[38]

Since the majority of Americans claim to support the concept of organ and tissue donation, the presumed consent model of organ donation could help bridge the gap between what Americans say and what Americans do. The lack of initiative taken by those who support voluntary organ donation appears to represent their apathy more than their indecision. It can be argued that presumed consent legislation would compensate for the difference between public opinion and public behavior.

The Uniform Determination of Death Act

In 1984, Baby Fae received the first xenograft (interspecies) heart transplant from a baboon, demonstrating the desperate need for neonatal organs for infants and children, (Veatch, 1989). This exemplifies the severe shortage of pediatric organs needed in the United States. Approximately 300 infants are born in this country each year with a severe congenital birth defect known as anencephaly. Anencephalic infants rarely live for more than a couple of days, and most will die within 24 hours after birth.[39]

Anencephaly is a congenital neural tube birth defect. An anencephalic infant is born without a fully functioning brain. Because their brain stem is intact, they are not considered to be clinically or legally brain dead. These infants have a very short life span, but due to biochemical medical degeneration, their organs decompose and become inadequate for medical transplantation. There is no cure or treatment for anencephaly.

Despite the absence of a normally developed and functioning brain, anencephalic infants are born with the rest of their vital organs intact. Due to the rapid deterioration of the child's condition, their organs and tissues are no longer viable for transplantation.[40] This is due to the inevitable onset of cardiopulmonary arrest in anencephalic infants.[41]

The severe shortage of pediatric organ donors has caused medical professionals to consider the use of anencephalic infants as potential donors. The severity of the crisis has led biomedical researchers to push the boundaries of ethical experimentation, as in the case of Baby Fae. Medical professionals have made several appeals to amend the Uniform Determination of Death Act and the National Organ Transplant Act so anencephalic infants can be considered potential organ donors for pediatric populations.

Many experts have suggested that we need to expand our current definition of brain death so anencephalic infants can become donors.[42] Anencephaly is clinically defined as, "markedly defective development of the brain, together with the absence of the bones of the cranial vault in the cerebral and cerebellar hemispheres, and with only a rudimentary brain stem and some traces of basal ganglia present."[43] In response to the unique problem of finding healthy organs for pediatric populations, medical researchers and policy makers have proposed legislation a change in the definition of brain death to include anencephalic infants.[44]
The clinical definition of brain death is, "in the presence of cardiac activity, the permanent loss of cerebral function, manifested clinically by the absence of purposive responsiveness to external stimuli, by absence of cephalic reflexes, by apnea when the patient is disconnected from a respirator, and by an isolectric electroencephalogram (EEG) for at least 30 minutes."[45]

The legal definition of death as defined by the Uniform Determination of Death Act is marked by (1) the irreversible cessation of circulatory and respiratory function or (2) the irreversible cessation of all brain functions.[46] Since anencephalic infants maintain limited brain stem activity during their short lives, they do not satisfy current legal or medical definitions of brain death. The National Organ Transplant Act prohibits the removal of any organs prior to the pronouncement of death. Since anencephalic infants can not be pronounced dead under the current definition, the act of removing organs would be the cause of death.
California courts have already been faced with the controversy surrounding the Constitutional rights of anencephalic infants and found that anencephalic infants do not meet the philosophical definition of a person.[47] As such, they are not entitled to equal protection under the law.[48]

Public Opinion v. Private Action

A 1985 Gallup Poll revealed that 75% of the American population approved of the concept of organ donation, yet, only 17% had completed organ donor cards. Less than half of willing donors had informed their next of kin of their intention to donate their organs and tissues at the time of their death.[49]
The severity of the organ shortage has commanded the attention of the general public on more than one occasion. Public health efforts intended to educate the public have not increased the number of voluntary donors.

Attempts to educate the public in order to increase the number of donors have failed miserably. Since public health efforts have been ineffective, special interest groups have requested government intervention to regulate the organ industry. Policy interventions have been aimed at both the general public and the medical community.

Conclusion 


Future attempts to regulate public policy concerning organ donation and transplantation should reflect upon the failures of previous legislative efforts. Judging by the apparent failure of the Uniform Anatomical Gift Act of 1968, and the National Organ Transplant Act of 1984, future legislation should focus on alternatives rather than extending or modifying what we already have.

State courts have been left to preside over disputes related to equitable distribution and Medicaid payments. The Department of Health and Human Services (HHS) is responsible for enforcing federal guidelines and legislation, and Congress recently heard testimony regarding the regional imbalance in the allocation of organs. Recent debate has focused on the fairness of the regional system, which apparently gives preference to recipients living in highly populated locations.

We should be responsive to the unique problems facing pediatric populations, and public policy should be flexible for the benefit of the greater good. Applicable policies should be evaluated and regulated independent of adult populations. After thirty years of ineffective legislation and irresponsible public behavior, perhaps it is time to look for new solutions to the same old problems.

References 


Banks, G. J. (1995). Legal and ethical safeguards: Protection of societies' most vulnerable participants in a commercialized organ transplant system. American Journal of Law and Medicine, 21 (45).

Botkin, J. R. (1988). Anencephalic infants as organ donors. Pediatrics, 82, 250-256.

Bureau of National Affairs Special Report (1997). Organ transplants: Policy issues of donation, allocation inextricably intertwined, experts say. BNA's Health Care Policy Report: Special Report, July 14, 1997.

Council on Ethical and Judicial Affairs, American Medical Association. Ethical considerations in the allocation of organs and other scarce medical resources among patients. [Special Article] Archives of Internal Medicine, 155 (1), 22-40.

Deutsch, L. B. (1997). Medicaid payment for organ transplants: The extent of mandated coverage. Columbia Journal of Law and Social Problems, 30, 185. Winter 1997.

Edward W.N.; Childress, J. E.; Perryman, J.; Robards, V.; Rowan, A.; Seely, M.S.; Sterioff, S.; Swanson, M. R. (June 30, 1993). Financial Incentives for Organ Donation: A Report of the UNOS Ethics Committee Payment Subcommittee.

Fentiman, L.C. (1993). Organ donation as a national service: A proposed federal organ donation law. Suffolk University Law Review, 1593, Winter 1997.

Ferrans, C.E., Powers, M.J. (1992). Psychometric assessment of the Quality of Life Index. Res Nurs Health, (15), 29-38.

Friedman, J. A. (1990). Taking the camel by the nose: The anencephalic as a source for pediatric organ transplants. Columbia University Law Review, May 1990.

The Gallup Organization, Inc., "The American Public's Attitudes Toward Organ Donation and Transplantation," conducted for The Partnership for Organ Donation, Boston, MA, February, 1993.

Jaffe, E. S. (1990). She's got Bette Davis['s] eyes: Assessing the nonconsensual removal of cadaver organs under the takings of the due process clause. Columbia Law Review, March 1990.

Historical Notes on the Uniform Anatomical Gift Act (1987): References and annotations. Uniform Laws Annotated.

Kolata, G. (1997). Controversy erupts over organ removals. The New York Times [Online]. Available: http://www.nytimes.com/yr/mo/day/news/national/organ-donor-dispute.html

Koop, C. E. (1983). Increasing the supply of solid organs for transplantation. Public Health Report 1983; 98: 566-572.

Randels, G. (1993). Finding the mean: Liver transplantation for alcoholics. Biolaw, 254-260.
Veatch, R. M. (1989). Death and dying and the biological revolution, 197-223.

[1] Dukeminier as cited in Jaffe, 1990.
[2] Jaffe, 1990.
[3] UNOS Fact Sheet; October 29, 1997.
[4] Carol Beasley, Partnership for Organ Donation, as cited in BNA's Health Care Policy Report, July 14, 1997.
[5]Id.
[6] James Burdick, as cited in BNA's Health Care Policy Report, July 14, 1997.
[7] Veatch, 1989, p.207.
[8]Id.
[9] Ferrans, C.E. & Powers, M.J. (1992). Psychometric assessment of the Quality of Life Index. Res Nurs Health, 1992; 15: 29-38.
[10]Id.
[11] Veatch, 1989, p.207.
[12]Id.
[13] Historical Notes on the Uniform Anatomical Gift Act, 1987: References and Annotations.
[14]Id.
[15]Id.
[16] Report of the Task Force on Organ Transplantation pursuant to the 1984 National Organ Transplant Act--P.L. 98-507-- "Organ Transplantation: Issues and Recommendations" (April 1986).
[17] Historical Notes on the Uniform Anatomical Gift Act, 1987: References and Annotations.
[18] UNOS Statement of Principles and Objectives of Equitable Organ Allocation, UNOS, 1997.
[19] Fact Sheet, prepared by Tennessee Donor Services, 1997.
[20] The National Attorney's Committee for Transplant Awareness, (1995). Organ tissue and transplantation: A legal perspective.
[21]Id.
[22] 42 U.S.C. § 1320b-8 (1988). "Routine Inquiry" requires all hospitals receiving federal funds through Medicare or Medicaid to establish protocols pursuant to which all families of dead or dying patients will be asked to consider donating the organs of their loved one.
[23] Fentiman, 1990.
[24] Uniform Anatomical Gift Act
[25] National Organ Transplant Act of 1984 (P.L. 98-507); 42 U.S.C.A. § 274 (e) (West 1995).
[26] National Organ Transplant Act § 274
[27]Id. The federal law as amended in 1988, subsec. (c)(1) of Pub.L. No. 100-607 defines "human organ" as the "human (including fetal) kidney, liver, heart, lung, pancreas, bone marrow, cornea, eye, bone, and skin or any subpart thereof and any other organ (or any subpart thereof, including that derived of a fetus) specified by the secretary of Health and Human Services by regulation." Id. at § 27274e.(c)(1). As cited in Banks (1995).
[28] 42 U.S.C.A. §274e (b).
[29]Nelson, et. al (1993). Financial Incentives for Organ Donation: A Report of the UNOS Ethics Committee Payment Subcommittee.
[30]Id.
[31]Id.
[32]The Gallup Organization, Inc., "The American Public's Attitudes Toward Organ Donation and Transplantation," conducted for The Partnership for Organ Donation, Boston, MA, February, 1993.
[33]Id.
[34] Banks, 1995; Deutsch, 1997; Jaffe, 1990.
[35] The Gallup Organization, Inc., "The American Public's Attitudes Toward Organ Donation and Transplantation," conducted for The Partnership for Organ Donation, Boston, MA, February, 1993.
[36] Dukeminier & Sanders, 1968, as cited in Veatch , 1989.
[37] Fentiman, L.C. (1993). Organ donation as a national service: A proposed federal organ donation law. Suffolk University Law Review, 1593. Winter 1997.
[38] Fentiman, 1990.
[39]Id.
[40] Botkin, 1988.
[41]Id.
[42] Anencephaly is a congenital neural tube birth defect. An anencephalic infant is born without a fully functioning brain. Because their brain stem is intact, they are not considered to be clinically and legally brain dead. These infants have a very short life span, but due to biochemical medical degeneration, their organs decompose and become inadequate for medical transplantation to healthier neonates and pediatric patients.
[43] Basal ganglia are the large masses of gray matter at the base of the cerebral hemisphere; currently, the corpus striatum (caudate and lentiform nuclei) and cell groups associated with corpus striatum (Steadman's Medical Dictionary, 1994).
[44] Koop, 1988; Fentiman, 1990; Friedman, 1990.
[45] EEG reading in the absence of hypothermia and poisoning by central nervous system depressants (Steadman's Medical Dictionary, 1994).
[46] Capron, A.M. (1987). Anencephalic donors: Separate the dead from the dying. Hastings Center Report 17:5-9.
[47] Friedman, 1990.
[48] Referring to due process protections under the Fourteenth Amendment of the United States Constitution.
[49] Historical Notes on the Uniform Anatomical Gift Act, 1987: References and Annotations.

Published by Elyssa Durant

####

Underwriting the Social Contract: Distributive Justice & Health Care Reform


The Problem Statement

As health care costs climbed exponentially in the 1980's, so did the cost of health insurance plans. As a result, employers began to enroll their employees in managed care organizations, and many Americans were forced to leave their traditional indemnity type plans. With the advent of the health maintenance organization, there is a financial incentive for the underutilization of care. (Blumstein, 1996; Davis & Shoen, 1996).

In order to reduce financial risk, health insurance companies have restricted enrollment to individuals in poor health. By covering the minimal standards of treatment and excluding high risk groups altogether, major US insurance companies have realized that the health insurance market can a be an extremely profitable industry.

The public sector absorbs the cost of unreimbursed care for chronic care in America (Robert Wood Johnson Foundation, 1996). Based upon these findings, it seems clear that the money being removed from the health care marketplace is fattening the pockets of CEOs and majority stockholders.

Recent trend towards localized government leaves individuals without a financial safety net. This is the least efficient manner to handle health care costs, and evades the premise that medical care is a natural right in a civilized society. Few Americans feel secure within the current system. The rising costs of medical care contributed to the recent market changes in both the administration and delivery of health services. The financial incentive to cover only the healthiest individuals ignores the fact that medical care is a social good.

Health Insurance Portability Act of 1996

Two years after the Clinton Health Plan was defeated in Congress, Senator Ted Kennedy and Nancy Kassebaum introduced the Kennedy-Kassebaum Bill in response to growing concerns about selective enrollment procedures used by health insurance companies in the private sector. In the final version of the Bill, insurance companies must limit preexisting condition clauses to twelve months. It has been estimated that this provision of the Bill will help an estimated 150,000 Americans obtain health insurance coverage.

There are many levels of the underinsured, including those without any coverage; effective policy must address the needs of the total population without shifting costs from one disadvantaged person to another. Kennedy-Kassebaum fails to address the cost issue-the primary concern for those at risk for losing their health insurance. It does nothing to help the uninsured acquire a decent health policy, and then provides no solution to the critical issue at hand- cost

Since Kennedy-Kassebaum does nothing to control the cost of health insurance and medical care in America, the Bill fails to respond to the issue of greatest concern to the citizens of this country: the cost of medical care. The Bill looks towards the states to develop consumer protections and weakens the regulatory role of the federal government. The majority of the American public is unaware of the fancy footwork involved with this legislation, and the demographics of the population it is intended to protect. In order to assess the utility of this Bill, it is critical to identify the populations at risk for loosing health insurance coverage and the underinsured.

Kassebaum-Kennedy focuses on a slim portion of the uninsured population, and those who would be eligible for COBRA continuation (Consolidated Omnibus Reconciliation Act of 1974). Of the 41 million uninsured Americans, only about 150,000 are expected to benefit from this legislation. The Health Insurance Portability and Accountability Act of 1996 is really nothing more than smoke and mirrors since it fails to address the true issue at hand-the simple fact that the cost of quality health care in America is becoming a privilege that only the wealthy can afford.

The Cost of Care for Pre-existing Conditions

An individual with high blood pressure may just require prescription medication. Cancer patients in remission may require chemotherapy, and a person suffering with a degenerative disease may be involved in treatment studies. Each condition requires individualized treatment that cannot be based upon the simple economic/cost-benefit analysis used in the utilization review process by large insurance companies. Clearly, the most effective treatment for one patient may not be the best for another. The time required for utilization review may present additional health risks and complications to a patient suffering from a chronic health condition.

Twelve months without insurance coverage may be financially devastating to some patients, and 63% of Americans have already forgone some type of medical treatment within the last year due to financial constraints. Publicity surrounding Kennedy-Kassebaum has hailed the bill as the "be all and end all in progressive legislation, however, in actuality it will only help about 150,000 people.

Recent studies have found that the majority of the uninsured population simply cannot afford to pay the premiums (Donelan et. al., 1996; Hoffman & Rice, 1996). According to their data, only 1% of the Uninsured population is due to current health status and exclusionary preexisting clauses, yet an overwhelming number of insured respondents reported an inability to receive medical care for chronic conditions. The majority of Americans with chronic illness are covered by some type of insurance, yet they are still subject to the utilization review process and access problems that deny or delay medically necessary treatment (Donelan, et. al., Hoffman & Rice, 1996).

Underwriting the Solidarity Principle

Traditional forms of insurance underwriting required that the contract explicitly state which illness or services are not covered by the policy, in advance. If the underwriter did not specifically state a certain condition in the contract, the insurer was held to the terms of the contract and required to pay for services utilized by the policyholder (Stone, 1994, as cited in Durant, 1996).

Increasing numbers of for-profit and non-profit insurance companies began to control costs by refusing to insure individuals who they felt would utilize more services. Insurers began to require health survey status questionnaires (refer to attachment A), and even began implementing AIDS and genetic testing to identify high-risk individuals (Brunetta, as cited in Gutmann & Thompson, 1996). In the 1980s, large insurance companies began including sexual orientation as a high-risk category, by using actuarial sound criteria. Such criteria concluded that gay men were a higher risk for contracting AIDS virus and refused to write policies for anyone believed to be homosexual, (Stone, 1994 as cited in Durant, 1996).

By limiting enrollment to the healthiest members of society, selective enrollment undermines the solidarity principle of health insurance (Davis & Shoen, 1996; Snow, 1996; Stone, 1994). By eliminating those who were suspect of using more services than their healthier counterparts use, insurance companies are able to offer rock bottom prices for young, healthy individuals. By excluding preexisting conditions and requiring certain individuals to purchase high-risk policies, the number of uninsured and underinsured Americans continues to grow exponentially (Durant, 1996).

More individuals are choosing not to purchase insurance simply because they cannot afford it. Even among those with employer based health coverage, the policies frequently exclude coverage for long-term illness or care of chronic conditions (MSNBC News Forum, 1996). Without a standard definition of preexisting conditions, these clauses serve as "wildcards" since they allow insurers to deny coverage for any illness that "manifested itself before the issuing date of the policy (Stone, 1994 as cited in Durant, 1996).

This statement allows insurers to deny treatment for benefits and services for the policyholder for undiagnosed illnesses or conditions of which they were unaware. As a result, the insurers began to demand medical histories of applicants and their families in order to identify high risk individuals (please refer to attachment A).

Legitimacy of Distributive Justice

While there is a legitimate role of government to distribute scarce resources among the nation's neediest individuals, sadly this is not the cause for the mismanagement of medical dollars in the United States today.

There is a big distinction between an individual being denied prescription medication at their local pharmacy due to a cost-effective formulary developed by their Managed Care Organizations (MCOs), than an individual being denied a liver transplant because healthy livers are a scarce resource. While both may have equally devastating consequences, it is more difficult to rationalize a lost life based upon rigid cost benefit analysis and utilization decisions made according to formulas and cost-benefit analysis of treatment protocols.

"The political controversy over the distribution of health care in the United States is an instructive problem in distributive justice. Good health is care is necessary for pursuing most other things in life. Yet equal access to health care would require the government to not only redistribute resources from the rich, healthy to the poor, and infirm, but also restrict the freedom of doctors and other health care providers. Such redistributions may be warranted, but to what level, and to what extent?" Gutmann & Thompson (Page 178).

Blendon and his colleagues have reported similar findings in public opinion polls from 1992 and 1994 (Blendon et. al., 1992; Blendon et. al., 1994). A recent study by the American Medical Association found cost to be of paramount concern to an overwhelming number of Americans (Donelan et. aI., 1996). Of the 40 million uninsured Americans, only 1% attributes their failure to acquire health insurance coverage to their preexisting conditions. Among the uninsured, cost is cited as the primary obstacle in obtaining health insurance coverage. Only 1% of the uninsured attributes their lack of coverage to a preexisting condition.

Based upon these democratic principles of distributive justice, consistent opinion polls demonstrate the legitimate role and public desire for government regulation of the health care industry. It has become obvious that the federal government must intervene in order to protect natural law rights, the social contract, and the Constitution of the United States. Regulation is needed to protect the individual freedoms, liberty, and the pursuit of "health, happiness, and the American Dream."

If America is to be the "Land of Opportunity," then clearly individual health and wellness should be an ideal to reach for. Current models of distributive justice emphasize public consensus as a legitimate role for government intervention. According to a number of studies by Blendon and his colleagues, the public has reported an overwhelming general concern about health care in this country, (1992, 1993, 1994, 1995, 1996).

State civil courts are backed up with cases where HMOs have violated the First Amendment (gag orders), the Fourteenth Amendment (due process), and the rights of protected classes under the Americans with Disabilities Act. Countless examples of "anecdotal" evidence appear as headlines everyday across the country. (New York Times, 1996; The New York Daily News, 1996; Long Island Newsday, 1996; LA Times, 1996; Picayne Times, 1996; Columbia Spectator, 1996; Columbia University Record, 1996; US News & World Reports, 1996; Newsweek 1996; Healthline, 1996; The Tennessean, 1996; The Albany Times, 1996; The Nashville Scene, 1996). In their entirety, these case reports represent the human tragedy that lies beneath the web of the very worst of American capitalism: corporate greed.

Identifying Populations At-Risk

A study by The Lewison Group in 1996 reveals insight into the private individual health insurance market. Clearly, individuals choosing to purchase health insurance policies for several hundred dollars each month expect their health care needs and expenditures to exceed that amount Regardless of health status, a young healthy 25 year old who purchases an individual health insurance policy can expect to pay well over $300.00 monthly for a health insurance policy with Empire Blue Shield Blue Cross (based upon 1996 rates, current rates available from the New York State Insurance Department).

Since individual policies are not addressed in the Health Insurance Portability and Accountability Act of 1996 (HIPA), an individual policy with Blue Cross Blue Shield of Tennessee excludes preexisting conditions for 24 months (enrollment booklet available upon request). The critical markets in need of reform are the adversely selected individual insurance market, and the state's most vulnerable populations: children; the elderly; the chronically ill; the uninsured; and the underinsured.

For the millions of individuals who have lost their employer based coverage, the cost of private health insurance is prohibitively expensive. Many individuals opt out of the individual market and apply for public assistance when the need arises. Those who have retained their health insurance coverage through their employers are being moved into managed care despite their efforts to retain their indemnity style plans (Davis & Shoen, 1996; The Lewison Group, 1996).

Access to Medical Care

As routine practice, HMOs deny or delay care for all services that are not outright medically necessary. Growing numbers of individuals have suffered irreparable harm, and many have died awaiting approval from their HMO's (The New York Times, 1996; Long Island Newsday, 1996; The Tennessean, 1996; Healthline, 1996). It is hardly a secret that HMOs have fallen short of their promise to provide comprehensive health care for the "whole" individual by emphasizing preventative medicine, using medical management to coordinate care. There is substantial evidence that individuals with chronic conditions receive substandard care in HMOs.

A four-year longitudinal study of medical outcomes found that the elderly, the poor, and persons with chronic conditions were in better health when covered by fee-for-service plans compared with a control group covered in HMOs (Ware et. al., 1996). New statistics released in Washington, DC by the American Medical Association and the Robert Wood Johnson Foundation revealed the direct costs of individuals with chronic conditions account for 75% of direct medical expenditures in the United States (Hoffman & Rice, 1996; based upon the National Medical Expenditures Survey; raw data available on CD from the Department of Health and Human Services Washington, DC). 45% of the American population suffers from at least one chronic illness.

If managed healthcare has been found to deliver inadequate care to this population, then we are looking at 100 million individuals who are potentially facing personal and financial crisis as they are moved into managed care. The public already accounts for the largest payment of direct medical expenditures, which means the millions of dollars being made by for-profit insurance companies are not being circulated into the economy to assist in public health costs care. The industry made a 14.8% profit in the 3rd quarter of 1996, however these medical dollars were removed from health care and used to fatten the pockets of CEO's and majority stockholders (Healthline, 1996).

Based upon a new report from the Robert Wood Johnson Foundation, the direct costs for persons with chronic conditions represent 69.4% of national expenditures in personal health care (Robert Wood Johnson Foundation, 1996). Their direct medical costs are estimated at $4672.00 annually compared with $817.00 annually for individuals with acute illness (Hoffman & Rice, 1996; based upon National Medical Expenditures Survey 1987, not adjusted for inflation). This population is the most vulnerable to complications in their health and with their source of payment. Large insurance companies only provide adequate coverage for acute illness (Donelan et al., 1996; Hoffman et. al, 1996).

Medicaid Managed Care

Following Tennessee's lead, many states have enrolled their medically indigent populations in Medicaid Managed Care Organizations (MCOs). In Daniels v. Wadley, (926 F. Supp. 1305), the court held that TennCare violated the Due Process Clause of the Fourteenth Amendment since such procedures eliminate fair hearings and independent medical review of disputes. The court found the pattern of routine denials of care by MCOs participating in the states TennCare program to violate the Medicaid Act since it compounded the problem of institutionalized waiting periods for medical appeals pending independent review by the Medical Review Unit (MRU), (42 U.S.C. § 1396 (a)(8)).

Furthermore, the court ordered federal injunctive protection to participants and beneficiaries because no state law may preempt federal law by depriving individuals of their constitutional rights. The Department of Health and Human Services (HHS) was ordered to revise its utilization review procedures for TennCare recipients in keeping with the Medicaid Act (42 U.S.C. § 1396 (a) (8)) ensuring due process protections for all covered beneficiaries by requiring "services are provided with 'reasonable promptness,'" (926 F. Supp. 1305).

This case is one of 543 civil suits pending in the state courts for violations of the Medicaid Act (based upon a Lexis-Nexis search performed December 26, 1996). With the passing of H.R. 3507 into public law, (The Welfare Reform Bill) private citizens will find little reprieve in the federal courts, so any attempts to hold states accountable for violations of federal law will be feeble at best (Denkeret. al., 1996).

Managed care has shown itself to be a farce of "medical management" in light of all the condemning evidence to the contrary. Timothy Icenogle, a medical doctor in the state of Arizona commented in 1981, "We play sort of an advocacy role. I think the public demands something more from physicians than to just be a blob of bureaucrats, and I think we have to take a stand now and then. Our role essentially as patient advocate, is to tell them, well, just because the insurance company is not going to pay, that is not the end of all the resources," (Icenogle, as cited in Gutmann & Thompson, 1996).

Never has this statement been needed more than it is today. Unfortunately, as more insurance companies refuse to pay for medical treatment, fewer resources become available for patients in desperate need of financial assistance. As Judge Kessler eloquently stated as she handed down her decision in Salazar v. District of Columbia, No. 93-452, December 11, 1996, "behind every fact found herein is a human face and the reality of being poor in the richest nation on earth, (936 F. Supp. Slip op. At 3).

Perhaps most distressing is the lack of accountability for mismanaged healthcare and improper denials of medically necessary treatment. HMOs claim immunity under ERISA, and leaving individuals without recourse in a sea contractual language and lengthy court calendars. It is evident that individuals protected under the Medicaid Act are not fundamentally different from other populations entrapped in the maze of managed care. They are simply those who have "had their day in court."

Due Process Protections

Since all Americans are theoretically entitled to due process protections under the constitution of the United States, it seems the federal courts are long overdue for making such a public statement. We are wasting precious time and losing millions in valuable human resources as we await decisions to be handed down from state courts. The Supreme Court of the United States has agreed to hear New York's request for an ERISA (Employee Retirement Income Security Act of 1985) waiver, making health maintenance organizations liable for medical malpractice in the state of New York.

When HMOs deny care from patients, it is ludicrous to hold individual physicians liable for the utilization decisions made by decentralized corporate review boards. It is time to take a serious look at tort reform, and demand action by the Supreme Court as they approach the date of New York's ERISA hearing. A blanket court ruling upholding Daniels v. Wadley, and Salazar v. District of Columbia is desperately needed to avoid an avalanche of liability suits filed in state courts. The court must uphold Daniels v. Wadley, and Salazar v. District of Columbia if further lives are to be saved in medicine rather than wasted away in the utilization review procedures. While we wait patiently for District of Columbia circuit court to order injunctive relief, the number of individuals suffering irreparable harm due to the systematic denial of medical care grows larger each day.

The history of Medicaid Managed Care does not provide a very optimistic look into the future of TennCare recipients and Medicaid beneficiaries in states around the country. Dating back to the implementation of the Arizona Health Care Cost Containment System (AHCCCS) in 1981, there are documented cases where "people reportedly died for lack of medical treatment before their eligibility was determined," (Varley, as cited in Gutman & Thompson, I 996). This leaves me to wonder why the states continue to enroll their most vulnerable populations into a system of managed care that has proven to be a disaster.

Perhaps worthy of comment is that Arizona is the only state to have voted Republican in every election since 1948-certainly provides insight into the conservative morale of the state. Although Arizona was the last state to accept the Medicaid cost sharing incentive proposed by the federal government in 1966, it was the first state to force its medically indigent population into managed care in 1981.

Violating Federal Law

Rigid pre-certification requirements and nonspecific utilization review procedures place strategic barriers to access medical treatment and services in Health Maintenance Organizations (HMOs). Pre-certification requirements are strategic barriers incorporated into the "black box" of utilization review that institutionalizes exclusionary waiting periods and routine denials of medically necessary treatment. According to federal law, "care and services are to be provided in a manner consistent with the simplicity of administration and the best interests of recipients," (42 U.S.C. § I 396a (a) (19)). Clearly, such rigid pre-certification requirements that complicate administrative processing and paperwork on the part of the enrolled beneficiaries is a violation of United States Code.

Furthermore, using primary care providers as a mechanism to limit access to specialists not only complicates administrative processing, but limits enrolled beneficiaries choice of health professionals beyond what is available to the general public in the geographic area (42 U.S.C. § 1 396a (a)(30)(A)). Certainly referral procedures do not "assure that recipients will have their choice of health professionals within the plan to the extent possible and appropriate," (42 U.S.C. § 434.29). Under this provision, it seems that any individual, especially those with chronic health conditions or disabilities should be allowed to choose a primary care provider with more expertise than a nurse practitioner. I will argue that a neurologist is more familiar with the unique needs of a patient with Multiple Sclerosis than a nurse practitioner is with little to no knowledge specific to the medical management of degenerative

Under the Medicaid Act of 1966, covered beneficiaries may appeal any utilization review decision which denies care or limits services. The Medicaid Act gives individuals the right to a fair hearing in front of an impartial independent Medical Review Unit (MRU). Furthermore, the Medicaid Act clearly states that medical services for a Medicaid beneficiary may not be terminated until the said beneficiary receives such a hearing

Conclusion

The country as a whole must realize what Judge Kessler told her courtroom. Her words are certainly words I will not forget-certainly worth being quoted at length:

"This case is about people-children and adults who are sick, poor, and vulnerable-for whom life, in the memorable words of poet Langston Hughes, "ain't been no crystal stair". It is written in the dry and bloodless language of "the Iaw"-statistics, acronyms of agencies and bureaucratic entities, Supreme Court case names and quotes, official governmental reports, periodicity tables, etc. But let there be no forgetting the real people to whom this bloodless language gives voice: anxious working parents who are too poor to obtain medications or heart catheter procedures or lead poisoning screening for their children, AIDS patients unable to get treatment, elderly persons suffering from chronic conditions like diabetes and heart disease who require constant monitoring arid medical attention. Behind every fact found herein is a human face and the reality of being poor in the richest nation on earth. (Slip op. At 3). -Judge Gladys Kessler, December 11, 1996.

Patients are routinely being denied medical care-- and being forced into a system that incorporates long waiting periods into their physician contracts and handbooks (Green, 1996). The private for-profit insurance industry has single-handedly undermined the solidarity principle of health insurance by using strict underwriting techniques, ridiculous treatment protocols; inconsistent definitions of chronic illness and rigid utilization review procedures unavailable to the consumer; and inconsistent definitions of "chronic illness" and "emergency" (Dallek, 1996). It is an industry which justified using sexual orientation to avoid covering AIDS patients, calling such methods "actuarially sound." The privatization of a public good has removed millions of dollars from the healthcare marketplace with "medical loss ratios" of 57% compared to 85% in the traditional health insurance market

Although a slim portion of the general public is unable to obtain health insurance coverage due to a preexisting condition, the more critical issue remains the cost of coverage. The cost of medical care will remain an issue since recent legislative efforts evade the issue. Recent changes in the delivery of health services is of grave concern and different options must be considered in order to find more effective ways to provide public and private assistance-

MANAGED CARE IS NOT THE ANSWER!!! FOR-PROFIT HEALTH CARE IS NOT THE ANSWER! PRIVATIZATION IS NOT THE ANSWER! 

References

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Published by Elyssa Durant
http://voices.yahoo.com/distributive-justice-health-care-2333826.html?cat=17

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Underwriting the Social Contract: Distributive Justice & Health Care Reform

The Problem Statement

As health care costs climbed exponentially in the 1980's, so did the cost of health insurance plans. As a result, employers began to enroll their employees in managed care organizations, and many Americans were forced to leave their traditional indemnity type plans. With the advent of the health maintenance organization, there is a financial incentive for the underutilization of care. (Blumstein, 1996; Davis & Shoen, 1996).

In order to reduce financial risk, health insurance companies have restricted enrollment to individuals in poor health. By covering the minimal standards of treatment and excluding high risk groups altogether, major US insurance companies have realized that the health insurance market can a be an extremely profitable industry.

The public sector absorbs the cost of unreimbursed care for chronic care in America (Robert Wood Johnson Foundation, 1996). Based upon these findings, it seems clear that the money being removed from the health care marketplace is fattening the pockets of CEOs and majority stockholders.

Recent trend towards localized government leaves individuals without a financial safety net. This is the least efficient manner to handle health care costs, and evades the premise that medical care is a natural right in a civilized society. Few Americans feel secure within the current system. The rising costs of medical care contributed to the recent market changes in both the administration and delivery of health services. The financial incentive to cover only the healthiest individuals ignores the fact that medical care is a social good.

Health Insurance Portability Act of 1996

Two years after the Clinton Health Plan was defeated in Congress, Senator Ted Kennedy and Nancy Kassebaum introduced the Kennedy-Kassebaum Bill in response to growing concerns about selective enrollment procedures used by health insurance companies in the private sector. In the final version of the Bill, insurance companies must limit preexisting condition clauses to twelve months. It has been estimated that this provision of the Bill will help an estimated 150,000 Americans obtain health insurance coverage.

There are many levels of the underinsured, including those without any coverage; effective policy must address the needs of the total population without shifting costs from one disadvantaged person to another. Kennedy-Kassebaum fails to address the cost issue-the primary concern for those at risk for losing their health insurance. It does nothing to help the uninsured acquire a decent health policy, and then provides no solution to the critical issue at hand- cost

Since Kennedy-Kassebaum does nothing to control the cost of health insurance and medical care in America, the Bill fails to respond to the issue of greatest concern to the citizens of this country: the cost of medical care. The Bill looks towards the states to develop consumer protections and weakens the regulatory role of the federal government. The majority of the American public is unaware of the fancy footwork involved with this legislation, and the demographics of the population it is intended to protect. In order to assess the utility of this Bill, it is critical to identify the populations at risk for loosing health insurance coverage and the underinsured.
Kassebaum-Kennedy focuses on a slim portion of the uninsured population, and those who would be eligible for COBRA continuation (Consolidated Omnibus Reconciliation Act of 1974). Of the 41 million uninsured Americans, only about 150,000 are expected to benefit from this legislation. The Health Insurance Portability and Accountability Act of 1996 is really nothing more than smoke and mirrors since it fails to address the true issue at hand-the simple fact that the cost of quality health care in America is becoming a privilege that only the wealthy can afford.

The Cost of Care for Pre-existing Conditions

An individual with high blood pressure may just require prescription medication. Cancer patients in remission may require chemotherapy, and a person suffering with a degenerative disease may be involved in treatment studies. Each condition requires individualized treatment that cannot be based upon the simple economic/cost-benefit analysis used in the utilization review process by large insurance companies. Clearly, the most effective treatment for one patient may not be the best for another. The time required for utilization review may present additional health risks and complications to a patient suffering from a chronic health condition.
Twelve months without insurance coverage may be financially devastating to some patients, and 63% of Americans have already forgone some type of medical treatment within the last year due to financial constraints. Publicity surrounding Kennedy-Kassebaum has hailed the bill as the "be all and end all in progressive legislation, however, in actuality it will only help about 150,000 people.
Recent studies have found that the majority of the uninsured population simply cannot afford to pay the premiums (Donelan et. al., 1996; Hoffman & Rice, 1996). According to their data, only 1% of the Uninsured population is due to current health status and exclusionary preexisting clauses, yet an overwhelming number of insured respondents reported an inability to receive medical care for chronic conditions. The majority of Americans with chronic illness are covered by some type of insurance, yet they are still subject to the utilization review process and access problems that deny or delay medically necessary treatment (Donelan, et. al., Hoffman & Rice, 1996).

Underwriting the Solidarity Principle

Traditional forms of insurance underwriting required that the contract explicitly state which illness or services are not covered by the policy, in advance. If the underwriter did not specifically state a certain condition in the contract, the insurer was held to the terms of the contract and required to pay for services utilized by the policyholder (Stone, 1994, as cited in Durant, 1996).

Increasing numbers of for-profit and non-profit insurance companies began to control costs by refusing to insure individuals who they felt would utilize more services. Insurers began to require health survey status questionnaires (refer to attachment A), and even began implementing AIDS and genetic testing to identify high-risk individuals (Brunetta, as cited in Gutmann & Thompson, 1996). In the 1980s, large insurance companies began including sexual orientation as a high-risk category, by using actuarial sound criteria. Such criteria concluded that gay men were a higher risk for contracting AIDS virus and refused to write policies for anyone believed to be homosexual, (Stone, 1994 as cited in Durant, 1996).

By limiting enrollment to the healthiest members of society, selective enrollment undermines the solidarity principle of health insurance (Davis & Shoen, 1996; Snow, 1996; Stone, 1994). By eliminating those who were suspect of using more services than their healthier counterparts use, insurance companies are able to offer rock bottom prices for young, healthy individuals. By excluding preexisting conditions and requiring certain individuals to purchase high-risk policies, the number of uninsured and underinsured Americans continues to grow exponentially (Durant, 1996).

More individuals are choosing not to purchase insurance simply because they cannot afford it. Even among those with employer based health coverage, the policies frequently exclude coverage for long-term illness or care of chronic conditions (MSNBC News Forum, 1996). Without a standard definition of preexisting conditions, these clauses serve as "wildcards" since they allow insurers to deny coverage for any illness that "manifested itself before the issuing date of the policy (Stone, 1994 as cited in Durant, 1996).

This statement allows insurers to deny treatment for benefits and services for the policyholder for undiagnosed illnesses or conditions of which they were unaware. As a result, the insurers began to demand medical histories of applicants and their families in order to identify high risk individuals (please refer to attachment A).

Legitimacy of Distributive Justice

While there is a legitimate role of government to distribute scarce resources among the nation's neediest individuals, sadly this is not the cause for the mismanagement of medical dollars in the United States today. There is a big distinction between an individual being denied prescription medication at their local pharmacy due to a cost-effective formulary developed by their Managed Care Organizations (MCOs), than an individual being denied a liver transplant because healthy livers are a scarce resource. While both may have equally devastating consequences, it is more difficult to rationalize a lost life based upon rigid cost benefit analysis and utilization decisions made according to formulas and cost-benefit analysis of treatment protocols.

"The political controversy over the distribution of health care in the United States is an instructive problem in distributive justice. Good health is care is necessary for pursuing most other things in life. Yet equal access to health care would require the government to not only redistribute resources from the rich, healthy to the poor, and infirm, but also restrict the freedom of doctors and other health care providers. Such redistributions may be warranted, but to what level, and to what extent?" Gutmann & Thompson (Page 178).
Blendon and his colleagues have reported similar findings in public opinion polls from 1992 and 1994 (Blendon et. al., 1992; Blendon et. al., 1994). A recent study by the American Medical Association found cost to be of paramount concern to an overwhelming number of Americans (Donelan et. aI., 1996). Of the 40 million uninsured Americans, only 1% attributes their failure to acquire health insurance coverage to their preexisting conditions. Among the uninsured, cost is cited as the primary obstacle in obtaining health insurance coverage. Only 1% of the uninsured attributes their lack of coverage to a preexisting condition.

Based upon these democratic principles of distributive justice, consistent opinion polls demonstrate the legitimate role and public desire for government regulation of the health care industry. It has become obvious that the federal government must intervene in order to protect natural law rights, the social contract, and the Constitution of the United States. Regulation is needed to protect the individual freedoms, liberty, and the pursuit of "health, happiness, and the American Dream."

If America is to be the "Land of Opportunity," then clearly individual health and wellness should be an ideal to reach for. Current models of distributive justice emphasize public consensus as a legitimate role for government intervention. According to a number of studies by Blendon and his colleagues, the public has reported an overwhelming general concern about health care in this country, (1992, 1993, 1994, 1995, 1996).

State civil courts are backed up with cases where HMOs have violated the First Amendment (gag orders), the Fourteenth Amendment (due process), and the rights of protected classes under the Americans with Disabilities Act. Countless examples of "anecdotal" evidence appear as headlines everyday across the country. (New York Times, 1996; The New York Daily News, 1996; Long Island Newsday, 1996; LA Times, 1996; Picayne Times, 1996; Columbia Spectator, 1996; Columbia University Record, 1996; US News & World Reports, 1996; Newsweek 1996; Healthline, 1996; The Tennessean, 1996; The Albany Times, 1996; The Nashville Scene, 1996). In their entirety, these case reports represent the human tragedy that lies beneath the web of the very worst of American capitalism: corporate greed.

Identifying Populations At-Risk

A study by The Lewison Group in 1996 reveals insight into the private individual health insurance market. Clearly, individuals choosing to purchase health insurance policies for several hundred dollars each month expect their health care needs and expenditures to exceed that amount Regardless of health status, a young healthy 25 year old who purchases an individual health insurance policy can expect to pay well over $300.00 monthly for a health insurance policy with Empire Blue Shield Blue Cross (based upon 1996 rates, current rates available from the New York State Insurance Department).

Since individual policies are not addressed in the Health Insurance Portability and Accountability Act of 1996 (HIPA), an individual policy with Blue Cross Blue Shield of Tennessee excludes preexisting conditions for 24 months (enrollment booklet available upon request). The critical markets in need of reform are the adversely selected individual insurance market, and the state's most vulnerable populations: children; the elderly; the chronically ill; the uninsured; and the underinsured.

For the millions of individuals who have lost their employer based coverage, the cost of private health insurance is prohibitively expensive. Many individuals opt out of the individual market and apply for public assistance when the need arises. Those who have retained their health insurance coverage through their employers are being moved into managed care despite their efforts to retain their indemnity style plans (Davis & Shoen, 1996; The Lewison Group, 1996).

Access to Medical Care

As routine practice, HMOs deny or delay care for all services that are not outright medically necessary. Growing numbers of individuals have suffered irreparable harm, and many have died awaiting approval from their HMO's (The New York Times, 1996; Long Island Newsday, 1996; The Tennessean, 1996; Healthline, 1996). It is hardly a secret that HMOs have fallen short of their promise to provide comprehensive health care for the "whole" individual by emphasizing preventative medicine, using medical management to coordinate care. There is substantial evidence that individuals with chronic conditions receive substandard care in HMOs.
A four-year longitudinal study of medical outcomes found that the elderly, the poor, and persons with chronic conditions were in better health when covered by fee-for-service plans compared with a control group covered in HMOs (Ware et. al., 1996). New statistics released in Washington, DC by the American Medical Association and the Robert Wood Johnson Foundation revealed the direct costs of individuals with chronic conditions account for 75% of direct medical expenditures in the United States (Hoffman & Rice, 1996; based upon the National Medical Expenditures Survey; raw data available on CD from the Department of Health and Human Services Washington, DC). 45% of the American population suffers from at least one chronic illness.

If managed healthcare has been found to deliver inadequate care to this population, then we are looking at 100 million individuals who are potentially facing personal and financial crisis as they are moved into managed care. The public already accounts for the largest payment of direct medical expenditures, which means the millions of dollars being made by for-profit insurance companies are not being circulated into the economy to assist in public health costs care. The industry made a 14.8% profit in the 3rd quarter of 1996, however these medical dollars were removed from health care and used to fatten the pockets of CEO's and majority stockholders (Healthline, 1996).

Based upon a new report from the Robert Wood Johnson Foundation, the direct costs for persons with chronic conditions represent 69.4% of national expenditures in personal health care (Robert Wood Johnson Foundation, 1996). Their direct medical costs are estimated at $4672.00 annually compared with $817.00 annually for individuals with acute illness (Hoffman & Rice, 1996; based upon National Medical Expenditures Survey 1987, not adjusted for inflation). This population is the most vulnerable to complications in their health and with their source of payment. Large insurance companies only provide adequate coverage for acute illness (Donelan et al., 1996; Hoffman et. al, 1996).

Medicaid Managed Care

Following Tennessee's lead, many states have enrolled their medically indigent populations in Medicaid Managed Care Organizations (MCOs). In Daniels v. Wadley, (926 F. Supp. 1305), the court held that TennCare violated the Due Process Clause of the Fourteenth Amendment since such procedures eliminate fair hearings and independent medical review of disputes. The court found the pattern of routine denials of care by MCOs participating in the states TennCare program to violate the Medicaid Act since it compounded the problem of institutionalized waiting periods for medical appeals pending independent review by the Medical Review Unit (MRU), (42 U.S.C. § 1396 (a)(8)).

Furthermore, the court ordered federal injunctive protection to participants and beneficiaries because no state law may preempt federal law by depriving individuals of their constitutional rights. The Department of Health and Human Services (HHS) was ordered to revise its utilization review procedures for TennCare recipients in keeping with the Medicaid Act (42 U.S.C. § 1396 (a) (8)) ensuring due process protections for all covered beneficiaries by requiring "services are provided with 'reasonable promptness,'" (926 F. Supp. 1305).

This case is one of 543 civil suits pending in the state courts for violations of the Medicaid Act (based upon a Lexis-Nexis search performed December 26, 1996). With the passing of H.R. 3507 into public law, (The Welfare Reform Bill) private citizens will find little reprieve in the federal courts, so any attempts to hold states accountable for violations of federal law will be feeble at best (Denkeret. al., 1996).

Managed care has shown itself to be a farce of "medical management" in light of all the condemning evidence to the contrary. Timothy Icenogle, a medical doctor in the state of Arizona commented in 1981, "We play sort of an advocacy role. I think the public demands something more from physicians than to just be a blob of bureaucrats, and I think we have to take a stand now and then. Our role essentially as patient advocate, is to tell them, well, just because the insurance company is not going to pay, that is not the end of all the resources," (Icenogle, as cited in Gutmann & Thompson, 1996). Never has this statement been needed more than it is today. Unfortunately, as more insurance companies refuse to pay for medical treatment, fewer resources become available for patients in desperate need of financial assistance. As Judge Kessler eloquently stated as she handed down her decision in Salazar v. District of Columbia, No. 93-452, December 11, 1996, "behind every fact found herein is a human face and the reality of being poor in the richest nation on earth, (936 F. Supp. Slip op. At 3).

Perhaps most distressing is the lack of accountability for mismanaged healthcare and improper denials of medically necessary treatment. HMOs claim immunity under ERISA, and leaving individuals without recourse in a sea contractual language and lengthy court calendars. It is evident that individuals protected under the Medicaid Act are not fundamentally different from other populations entrapped in the maze of managed care. They are simply those who have "had their day in court."

Due Process Protections

Since all Americans are theoretically entitled to due process protections under the constitution of the United States, it seems the federal courts are long overdue for making such a public statement. We are wasting precious time and losing millions in valuable human resources as we await decisions to be handed down from state courts. The Supreme Court of the United States has agreed to hear New York's request for an ERISA (Employee Retirement Income Security Act of 1985) waiver, making health maintenance organizations liable for medical malpractice in the state of New York.

When HMOs deny care from patients, it is ludicrous to hold individual physicians liable for the utilization decisions made by decentralized corporate review boards. It is time to take a serious look at tort reform, and demand action by the Supreme Court as they approach the date of New York's ERISA hearing. A blanket court ruling upholding Daniels v. Wadley, and Salazar v. District of Columbia is desperately needed to avoid an avalanche of liability suits filed in state courts. The court must uphold Daniels v. Wadley, and Salazar v. District of Columbia if further lives are to be saved in medicine rather than wasted away in the utilization review procedures. While we wait patiently for District of Columbia circuit court to order injunctive relief, the number of individuals suffering irreparable harm due to the systematic denial of medical care grows larger each day.

The history of Medicaid Managed Care does not provide a very optimistic look into the future of TennCare recipients and Medicaid beneficiaries in states around the country. Dating back to the implementation of the Arizona Health Care Cost Containment System (AHCCCS) in 1981, there are documented cases where "people reportedly died for lack of medical treatment before their eligibility was determined," (Varley, as cited in Gutman & Thompson, I 996). This leaves me to wonder why the states continue to enroll their most vulnerable populations into a system of managed care that has proven to be a disaster.

Perhaps worthy of comment is that Arizona is the only state to have voted Republican in every election since 1948-certainly provides insight into the conservative morale of the state. Although Arizona was the last state to accept the Medicaid cost sharing incentive proposed by the federal government in 1966, it was the first state to force its medically indigent population into managed care in 1981.

Violating Federal Law

Rigid pre-certification requirements and nonspecific utilization review procedures place strategic barriers to access medical treatment and services in Health Maintenance Organizations (HMOs). Pre-certification requirements are strategic barriers incorporated into the "black box" of utilization review that institutionalizes exclusionary waiting periods and routine denials of medically necessary treatment. According to federal law, "care and services are to be provided in a manner consistent with the simplicity of administration and the best interests of recipients," (42 U.S.C. § I 396a (a) (19)). Clearly, such rigid pre-certification requirements that complicate administrative processing and paperwork on the part of the enrolled beneficiaries is a violation of

United States Code.

Furthermore, using primary care providers as a mechanism to limit access to specialists not only complicates administrative processing, but limits enrolled beneficiaries choice of health professionals beyond what is available to the general public in the geographic area (42 U.S.C. § 1 396a (a)(30)(A)). Certainly referral procedures do not "assure that recipients will have their choice of health professionals within the plan to the extent possible and appropriate," (42 U.S.C. § 434.29). Under this provision, it seems that any individual, especially those with chronic health conditions or disabilities should be allowed to choose a primary care provider with more expertise than a nurse practitioner. I will argue that a neurologist is more familiar with the unique needs of a patient with Multiple Sclerosis than a nurse practitioner is with little to no knowledge specific to the medical management of degenerative

Under the Medicaid Act of 1966, covered beneficiaries may appeal any utilization review decision which denies care or limits services. The Medicaid Act gives individuals the right to a fair hearing in front of an impartial independent Medical Review Unit (MRU). Furthermore, the Medicaid Act clearly states that medical services for a Medicaid beneficiary may not be terminated until the said beneficiary receives such a hearing

Conclusion

The country as a whole must realize what Judge Kessler told her courtroom. Her words are certainly words I will not forget-certainly worth being quoted at length:

"This case is about people-children and adults who are sick, poor, and vulnerable-for whom life, in the memorable words of poet Langston Hughes, "ain't been no crystal stair". It is written in the dry and bloodless language of "the Iaw"-statistics, acronyms of agencies and bureaucratic entities, Supreme Court case names and quotes, official governmental reports, periodicity tables, etc. But let there be no forgetting the real people to whom this bloodless language gives voice: anxious working parents who are too poor to obtain medications or heart catheter procedures or lead poisoning screening for their children, AIDS patients unable to get treatment, elderly persons suffering from chronic conditions like diabetes and heart disease who require constant monitoring arid medical attention. Behind every fact found herein is a human face and the reality of being poor in the richest nation on earth. (Slip op. At 3). -Judge Gladys Kessler, December 11, 1996.

Patients are routinely being denied medical care-- and being forced into a system that incorporates long waiting periods into their physician contracts and handbooks (Green, 1996). The private for-profit insurance industry has single-handedly undermined the solidarity principle of health insurance by using strict underwriting techniques, ridiculous treatment protocols; inconsistent definitions of chronic illness and rigid utilization review procedures unavailable to the consumer; and inconsistent definitions of "chronic illness" and "emergency" (Dallek, 1996). It is an industry which justified using sexual orientation to avoid covering AIDS patients, calling such methods "actuarially sound." The privatization of a public good has removed millions of dollars from the healthcare marketplace with "medical loss ratios" of 57% compared to 85% in the traditional health insurance market

Although a slim portion of the general public is unable to obtain health insurance coverage due to a preexisting condition, the more critical issue remains the cost of coverage. The cost of medical care will remain an issue since recent legislative efforts evade the issue. Recent changes in the delivery of health services is of grave concern and different options must be considered in order to find more effective ways to provide public and private assistance-MANAGED CARE IS NOT THE ANSWER!!! FOR-PROFIT HEALTH CARE IS NOT THE ANSWER! PRIVATIZATION IS NOT THE ANSWER!

References

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Blumstein, J. F. (1996). The fraud and abuse statute in an evolving health care market Life in the health care speakeasy. American Journal of Law and Medicine,22(2), 205-231.

Bunis, D. (1996, July 16). Sweeping changes for health care: What it means to you. Long Island Newsday, pp. A6, A53.

Chartland, S. (1996, April 28). The changing game of health insurance. The New York Times [On-line. Available: http://www.ny€mes~com/

College of Physicians and Surgeons at Columbia-Presbyterian Medical Center Office of Public Relations. (1996, July 25) Press Release: New York's Ivy League Medical Schools announce first of its kind affiance.

Clymer, A. (1996, August 1). Accord reached on expanding worker's health benefits. The New York Times [On-line] Available: http://www.nytimes.com/yr/mo/day/pOlitic5/health­bffl.htmI

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Davis, K., & Shoen, (1996, March). Health services research and the changing health care system. New York: The Commonwealth Fund. Available: http://www.cmwf.org

Donelan, K., Blendon, R. J. Hill, C.A., Hoffman, C., Rowland, D., Frankel, M., Altman, D. (1996). Whatever happened to the health insurance crisis in the United States? Journal of the American Medical Association,276(16), 1346-1350.

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Families USA (1996, August). Kassebaum-Kennedy health insurance bill clears congress: Medicaid Saving Accounts limited to demonstration program. Washington, DC: Families USA. Available: http://epn.org/families/fakeka.html

Fein, E. B. (1996, July 5). For-profit hospitals: Once unthinkable, now probably inevitable. The New York Times, [On-line]. Available: http://www.nytimes.com

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Published by Elyssa Durant

####

Medical Treatment for Individuals with Disabilities by Elyssa Durant, Ed.M.

Futile Care for Babies: Baby K and Anencephalic Infants

Baby K is frequently used as the classic example of an infant with a hopeless medical condition. Born with a congenital defect known as anencephaly, Baby K was born without a brain. Photographs of anencephalic infants leave us with an unsettling image of the physical reality ofthis particular birth defect. Dr. Boehm of Vanderbilt University Medical Center gives a graphic description of "monster children," making it easier on our psyches to withdraw medical care.

Anencephaly provides a good example of futile care for infants since it represents the most extreme case of disfigurement and congenital deformity. The case involving Baby K was a landmark ADA decision filed in district court against Fairfax Hospital in Fairfax, Virginia.

Although Baby K was capable of maintaining the most basic life functions at the early stages of her infancy, her mother soon began to bring her to the emergency room to prolong her life when Baby K encountered respiratory failure. The suit filed by Baby K's mother against Fairfax Hospital raises several legal questions regarding the definition of futile care and medical treatment for Americans with disabilities. The case eventually became a landmark ADA (Americans with Disabilities Act) case when the district court ruled that Baby K was being discriminated against because of her anencephaly-clearly a disability under the definition of the ADA.

The court found that Baby K was otherwise qualified for medical treatment, however, they failed to address other critical issues including an agreed upon clinical definition of futile care. Since Baby K was privately insured, the court also did not address the allocation of resources and public funding for medically futile care.

Although the court took an interesting approach to decide this case, I am rather sympathetic to the plight ofthe physicians at Fairfax Hospital since Baby K had little chance of survival beyond her early infancy.
Despite my agreement on the single issue of anencephaly, I would be hesitant to make a generalization regarding futile care for all medically "hopeless" cases-especially those involving degenerative conditions such as Multiple Sclerosis (MS) and other forms of spinal and/or brain trauma.

In the case of Baby K, it is the literal definition (or lack thereof) which I find so troubling. Is medical research on myelin regeneration futile? Are the expenditures for spinal rehabilitation inappropriate? Who has the authority and expertise to make decisions about the quality of life and who decides who shall live and who shall die? What makes one life more valuable to society and worthy of medical expenditures?

Modern medical science is just starting to recognize the strength of the mind-body relationship and traditional scientific models have vastly underestimated the will to live and the ability to recover from traumatic injuries.

These modern day "miracles" on the evening news- patients with no hope who suddenly wake up from a twenty-year coma convey a message of hope and cast doubt on the expertise of the American Medical

Association.

Published by Elyssa Durant

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