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Tuesday, November 24, 2009

Ian Pearl: The Dog that Bit Back

Last month I read about Ian Pearl and hoped that his story would get wide spread coverage and become part of the debate about health care reform. Sadly, I suspect few people recall who and why Ian Pearl was in the news. And yes Pearl was in news in the form of stories in the Washington Post, Miami Herald, Huffington Post, and CNN. Let me refresh your memory. Ian Pearl is a 37 year old man who was one of the first students with a disability mainstreamed in Broward County, Florida. Pearl has Muscular Dystrophy and has used a ventilator for the last 18 years. Usually when one uses a ventilator the person in question ends up in an institution. In Pearl's case he was lucky in that his father purchased an insurance policy in 1981 with Guardian Life, a multi billion dollar New York based insurance company. The policy had no lifetime benefit cap and covered home nursing care. In October Guardian Life withdrew Pearl's policy from all policy holders in New York where his father's business is based. The "replacement" plan had limited benefits and home nursing was not covered. For Pearl, this change was a death sentence (as a last resort he would have been admitted to a state hospital under Medicaid). Pearl filed a lawsuit and asked the Department of Health and Human Services to force Guardian Life to continue his insurance. All this is pretty humdrum, typical big business. Who cares if one man will die or be forced into a nursing facility where his life expectancy is nil? This all changed when Pearl's lawsuit uncovered inflammatory documents that established Guardian Life had created a "hit list" of its costliest members they wanted to "get rid of". Who did Guardian Life target? People with muscular dystrophy, multiple sclerosis, brain injury, and paralysis. Guardian executives referred to people like Pearl and my paralyzed ass as "dogs" and "trainwrecks". They openly debated how to get rid of people with expensive and chronic conditions. It is against the law to cancel individual members with health problems so Guardian Life decided to cancel plans for all members of the specific plan Pearl had. A federal court ruled the Guardian Life actions were legal, barring an order by the Department of Health and Human Services, and that as of December 1 Pearl would lose his policy.

Ian Pearl's story has a happy ending. Guardian Life reversed its decision once it got bad publicity and restored Pearl's policy. Surely characterizing Pearl as a "dog" and "trainwreck" did not help Guardian Life's image and prompted the CEO, Dennis Manning, to apologize for the memo. Guardian Life's contention that policies such as Pearl's that offered unlimited home nursing was too expensive for small business customers to buy failed to resonate. Legislators have also stepped into the picture in New York and are trying to pass what they call Ian's Law that will prevent insurance companies from discontinuing policies deemed too expensive. I am obviously relieved for Pearl but know his ability to fight back was not the norm. Thus I cannot help but wonder how many others "dogs" with muscular dystrophy, multiple sclerosis, brain injury, and paralysis have had their policies discontinued? How many people have died as a result of Guardian Life's effort? More generally, are chronic conditions i.e. expensive medical care the reason why people spend so much on health care policies? Guardian Life is an old company whose tag line is "Solutions for Life". Well, it appears Guardian Life's solution is get rid of people like Pearl and me whose life is not valued or at least deemed too costly.

Guardian Life is not the entire problem but rather a symbol of a much larger issue. First, there are no ethics in business. We live in an era of global capitalism where the bottom line, money, is more important than any other variable. No amount of individual wealth is enough. This is a new era for Americans my age that came of age when paternalistic capitalism was the norm. I vividly recall my father telling me his company and others like it had the moral responsibility to take care of its workers. Can you imagine any CEO stating that today? I am not naive. My father and other wealthy capitalists wanted to make a profit but knew the difference between right and wrong. Targeting "dogs", people that truly need health insurance, is simply wrong--especially for a company that reported $7.5 billion dollars in revenue and a net income of $437 million dollars. What I want to know is why did no one at Guardian Life state the obvious--people like Pearl need their policy to survive and as such the policy must be honored even if they lose money. Second, health care costs in the last decade have sky rocketed. Every person that has been ill or can read a newspaper knows this. At the same time, companies like Guardian Life have drastically scaled back the benefits in the types of plans it carries. In home nursing care is deemed too costly and by contemporary standards Pearl's policy is generous. The overwhelming bias against home care reveals what ADAPT has been fighting for years--the nursing home bias. It is far more humane and economical to provide care for a person like Pearl in his own home. Think about it this way: would you like to live in a hospital or nursing facility at age 37? I think not. Third, I have noticed in the last few years that popular culture and the mass media have decided that life on a ventilator is no life at all. TV shows such as ER and movies such as Million Dollar Baby receive accolades while depicting life on a ventilator or with a disability such as paralysis as a fate worse than death. This is infuriating to me for it contradicts everything that I know and believe. We humans are highly adaptable, have great individual variation and these are traits that should be valued. Instead, there is an effort under way to kill Pearl and by extension people like me or at least manipulate our bodies in ways that are questionable at best (think the Ashley Treatment).

I am not being extremist--if you doubt me read the work of Peter Singer who would prefer people like Pearl did not exist as he would encourage parents to kill infants with disabilities. A belief that has filtered into neonatal units as the journal Pediatrics recently reported nurses considered death preferable to a life with a disability. How and when did people with a disability become expensive unwanted commodities is a question I do not have the answer to. A variable surely is simple numbers, there are more people with a disability living a rich and full life. But that life takes money and support in the form of adequate health care. More importantly though life with a disability must be valued. People at Guardian Life cannot consider Pearl and me to be dogs. We are human beings and our humanity must be recognized. But this effort does not begin or end with Guardian Life. My neighbors must consider me, a man that uses a wheelchair, a part of the community and demand public buildings be accessible. Schools must see past a given disability and acknowledge and value the potential of all students. Colleges must do the same and make an effort to include disability studies into the larger curriculum. Corporations must hire people with a disability. Citizens must elect candidates with a disability. In order for me to not feel a class apart from the rest of society people like me must be included at every social strata. Until that happens corporations like Guardian Life will continue to do everything in its power to get rid of dogs like Pearl and me. Thankfully some dogs like Pearl bite back and this bad cripple will continue to wield a mean pen and assert his civil rights.


Stephanie said...

I'm involved in an advocacy group called "NOEWAIT," aka: National Organization to End the Waiting Lists (I'm the sate coordinator for South Carolina). There are often very long waiting lists for people with developmental disorders and severe, chronic disorders to get any kind of help if they have Medicaid (like I do) and thus they end up in an institution. NOEWAIT is working on ending the waiting list so that instead of being shoved into an institution all of the thousands of people on waiting list (I am one of them) can live at home and in the community. I suppose it is similar to ADAPT except NOEWAIT is specifically targeting waiting lists.

Many think autism (my diagnosis is Autistic Disorder without mental retardation aka "High-Functioning Autism") is a fate worse than death. Heck, many still think that bipolar disorder (another diagnosis I have) is a horrible life.

We have a way to go before people realize that the paralyzed and severely mentally disabled can also have good lives.

william Peace said...

Stephanie. NOWAIT is a great idea--I like the focus on a particular issue and from what I understand have made a difference. Unlike you, my disability is obvious and cannot be hidden. In addition, society generally frowns upon prejudice against people with a physical disability (unless access is deemed too costly). None of these restraints are present when it comes to developmental and cognitive deficits or disorders. In my estimation, the bigotry you encounter is far more pronounced than what I deal with.

emma said...

"A variable surely is simple numbers, there are more people with a disability living a rich and full life. But that life takes money and support in the form of adequate health care"

You've hit the nail on the head there. I think attitudes towards disability have changed over the years, although there is still a long, long road to go. At the same time many people note how there are more people with disabilies now, due to improved healthcare, and then immediatley afterwards ask who is going to pay for continued care - the usual lines about "contribution to society" etc etc come up, but no one mentions how a large percentage of people with disabilites are out of work due to dicrimination and lack of accomodations, not to mention the percentage of people with disabilites living below the poverty line.

Coming from the UK I have never understood how healthcare works in the US, it's inhumane, as is institutionalisation, does quite go with the image that the US tends to present it self with.

emma said...

sorry, I meant - it does NOT quite go with the image the US tends to present itself with.

william Peace said...

Emma, People with a disability are no longer sent to institutions or house bound as they once were. So yes we are more visible but that institutional bias or legacy remains. The unemployment rate is astronomical and bias faced daily overwhelming. No one I know with a disability has adequate health insurance. As for our health care system, it worked in the immediate aftermath of WWII when one and all had jobs and health insurance through that employment. This created a cultural myth that the American health care system is the best in the world. Anyone with an ounce of common sense knows this is not true. We have a two class system today--those with insurance and those without. This dichotomy has split the nation and will continue to do so. I have no ready answers to this problem. Perhaps a hybrid system of some sort combining the positive aspects of the British and American systems.

erika said...

I come from a country that provides universal health coverage and I will never ever grasp how health care can be a privilege and not a right. How come that people can't be denied emergency care and you can get in trouble if you don't help someone in a life or death situation, yet it's okay to withhold treatment to conditions that kill you just a little bit slower? And this "hit list" and calling people "dogs" and "trainwrecks" is just so abominable that I don't have the words to express my revulsion.

OffTheLows said...

The issue with Ian Pearl and those who consume vast amounts of healthcare resources is that the cost shifts are threatening to collapse the system. If 1 in 1000 persons are like Ian, who may have lifetime benefits in excess of $40 million, then for his healthcare alone, the other 999 policyholders would pay $120 a month more in premiums. As there are more and more advances in healthcare to treat more and more people for more and more ailments, the system, insurance based or single payer, begins to collapse upon itself. Imagine 10 years from now we get some sort of stem cell therapy for those with autism (1 of 100 persons), and the treatment is perhaps $100,000 per year, per person, you again run into this $120 additional premiums a month for one policyholder's one disease, not even factoring any other ailments the one person has. Cancer advancements, Alzheimers, MD, MS, autoimmune, you name it, if you improve quality of life with a lifetime treatment regimine, you add unsustainable costs to the system as premium increases and increases to U.S. debt (already in a danger zone - see plummeting dollar) are the only pressure release valves if you continue treating everyone for everything no matter what the cost.

william Peace said...

WebHead, So what do you suggest Mr. Pearl and other people whose health care costs are significant do? Should they be encouraged to die so health insurance remains affordable? Force them into nursing homes to save money? Have doctors refuse to treat people deemed too costly? More generally, do we place a dollar amount on human life and health care costs?
Health insurance companies are highly skilled at ridding themselves of people like Mr. Pearl. In fact I don't know a single paralyzed person with adequate health insurance (myself included). This may be profitable (though ethically questionable) and people like Mr. Pearl suffer and some even die. I for one cannot accept this. You worry about the existing system collapsing because of people like Mr. Pearl. I would suggest the system is collapsing because it is corrupt and morally bankrupt. Perhaps health insurance premiums would be more reasonable if the CEOs that run these multi billion dollar corporations did not earn tens of millions a year. Indeed, I wonder what the CEO of Mr. Pearl's health insurance company earned last year.

RehaDesign said...


It is true that disabled people add cost to the system, which is currently either company or government run insurance. But this is exactly WHY there is insurance. The reason we pay every month for insurance is to rely on a pool of money in case we have a need which is greater than our ability to pay.

Insurance actuaries are aware that there is a bell-shaped curve of people who will pay and never need insurance and others will need a great deal of coverage.

We can always just lop off the people at the one end of the bell shaped curve, in order to make it less expensive for everyone? But where does that game end? Do we only cover people in the middle and low end of the curve?

It is amazing to me that a company offered a policy, had people benefiting from it and then decided to cancel it because it proved to be too expensive, without some kind of compensation for those being covered. The system as it is, just is not working.