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.
