Tuesday, September 1, 2009

Immigrant Health and Heart Transplants

I'm still jet lagged from 2 1/2 weeks in Europe, so when I woke up in the dark this morning I sought out the online New York Times for solace. Two articles yielded a larger story about health reform.

Eric De La Cruz was a student and part time disc jockey and graphic designer in Las Vegas in his early 20s when the symptoms of progressive cardiomyopathy - weakness of the heart muscle - began to cause symptoms of heart failure. The condition steadily got worse, and it became clear that the only hope for Eric would be a heart transplant. But neither of his employers provided health insurance. And, surprisingly, when he applied for Social Security disability benefits, which would have made him eligible for Medicare, he was turned down.

Eric did qualify for Medicaid, but in Nevada Medicaid covers heart transplants only up to age 20. At this point his sister began a Twitter-based effort to raise money, and within two weeks $1 million had been offered! Eric went to the University of Southern California for evaluation, but his condition was too far advanced, and he died on July 4.

The second article was from Massachusetts. The recession-driven shortfall in revenues and the requirement that the state stay within its budget necessitated cutbacks in the state's health reform program. (The program has led to the lowest uninsured rate in the U.S. - 2.6% compared to a national average of 15%.) The legislature decided to cut most of the $130 million dedicated to 31,000 legal immigrants. But by scrounging up some additional funding and developing a stripped down set of benefits, a relatively comprehensive insurance package will still be available to the legal immigrant group. It won't cover dental, hospice, or skilled nursing care, and will require higher copayments for non-generic drugs, but it would have covered a heart transplant for someone with Eric Cruz's condition.

After his death, Eric's sister Veronica De La Cruz said:
If my brother had been able to buy health insurance, he would never have been in this situation. No one should ever have to go through what we’ve been through. Eric should still be alive.
Veronica is half right. In a wealthy country like the U.S., a healthy young person like Eric should be eligible for a heart transplant. A heart might not be available, but that would be a tragedy, not an injustice.

Ben Kieckhefer, a spokesman for the Nevada Department of Health and Human Services, described the the state's policy clearly and honestly:
All insurance plans decide what things they are going to cover and what things they are not going to cover. Everyone in the state Medicaid program recognized the difficult situation the family was in, but we can’t just start covering something for one individual case.
Unless there is some form of universal or near-universal coverage, as through a single payer system or a requirement that individuals purchase insurance (as in Massachusetts) Eric would not - and should not - have been able to buy insurance. If we allow ourselves to wait until a need appears before we get insured, free-riding would be the rational choice for the individual to make, and insurance costs would be stratospheric in no time.

Affordable insurance depends on social solidarity, with the healthy contributing more than they receive and the sick receiving more than they contribute. In the U.S., however, talking about "solidarity" invokes fear of the other dreaded "S" word - "socialism."

And as the stories from Massachusetts and Nevada show, viable insurance also entails the equally dreaded "R" word - "rationing." Health systems must set limits. A society (like the U.S.) that refuses to ration in a thoughtful, ethically-guided manner, will (like the U.S.) end up rationing in a thoughtless, unethical manner. Whether a society prefers to limit high cost/high tech interventions as Nevada has done, or more mundane but nevertheless valuable services as Massachusetts chose to do, is the kind of policy decision that requires thoughtful democratic deliberation. Sadly, thoughtful deliberation is currently being drowned out by strident advocacy, pervasive misunderstanding, and lies.

(To read more about Eric De La Cruz see here. For the Massachusetts story, see here.)


Ashley B. said...

It is so important to talk about this distinction between a tragedy and an injustice. I think nobody believes that even an ideal reform bill will eliminate "rationing," as you imply we ration care already (just on a different system). However, we are in a position to push for a more equitable distribution of burden and benefit around health.

The moment is now, I believe, to reassert the value of health as a human right and certainly a reasonable expectation for someone living, working, and contributing to one of the world's wealthiest nations.

Jim Sabin said...

Hi Ashley -

I agree with you that the moment is now (actually, long past) for our society to (1) acknowledge our obligation to ensure that every American (including legal immigrants) has access to good health care and (2) make it happen!

I have found the distinction between tragedy and injustice, or, put in different terms, circumstances that are "disappointing but fair," an important conceptual and communicational tool. In my experience most adults can accept disappointment if they see the setting in which it occurs as respectful and acting in a fair and principled manner.

I've been disappointed so far by the degree to which "keep the government off my back" sentiments have drowned out solidarity perspectives of the kind you are arguing for. Keep up your advocacy!



Celeste said...

A very frustrating thing (at least in my state). Patient's become ill. They are told to apply for Social Security Disability -- but then their income is too great on disability to qualify for Medicaid. They do not qualify for Medicare until they are on SSD for (I think) 3 years. For this heart patient, it looks like there were years between diagnosis and death (although he couldn't get SSD so it's a mute point). For some conditions, one doesn't have 3 years.... We went through this with a young girl who needed a bone marrow transplant for HD. At that stage...the "greater" benefit for the patient IS NOT the disability payment; it is the access to medical care.

Jim Sabin said...

Hi Celeste -

Thank you for your comment. You make an important practical point. Disability income and access to Medicare and Medicaid can track separately. As you say, for some folks the health insurance piece is even more important than income.

Your example shows why we need universal insurance. People shouldn't have to scramble for coverage when a serious condition strikes!