Much Ado about UNOS

Next weekend my husband and I plan to attend a fundraiser to raise money to cover some medical expenses for the friend of a friend. The person in question, a middle-aged woman not much older than myself, suffers from severe cardiomyopathy. Her heart is literally falling apart and she needs a transplant.

Even if a suitable heart is found, the costs of the transplant are astronomical. The procedure itself costs over $600,000. That price doesn’t include any post-operative care, which can run patients another $200,000. Nor does that figure include the cost of immunosuppressive drugs, which heart transplant recipients need to take for the rest of their lives. Those drugs and follow-up monitoring run nearly $30,000 annually.

Now, my friend’s friend is somewhat lucky in this regard. Her health insurance will actually cover most of these costs, at least until she hits her lifetime coverage cap. So then, why is there a need to have a fundraising event?

The reason is that the family needs to move to California in order to improve the patient’s chance of getting a suitable donor organ. Organ transplantation in the United States is overseen by an organization called the United Network for Organ Sharing (or UNOS), a private non-profit organization that operates under contract with the federal government. One of the things that UNOS does is manage the national transplant waiting list, matching patients in need of an organ with suitable donors (both living and dead).

Organs for transplant are exceedingly rare commodities. For example, nearly 4,000 people are currently on the waiting list for a new heart; that is almost double the number of organs that become available annually. UNOS thus allocates these organs according to a complex algorithm that includes age, blood type, medical urgency, waiting time, geographic distance between donor and recipient, size of the donor organ in relation to the recipient, and type of organ needed. In the case of new hearts, the two key factors are medical urgency and geographical distance.

To deal with geography, UNOS divides the country into 11 different zones, and organs tend to be allocated within a particular zone. When a heart becomes available in zone 9 (which includes New York and Western Vermont), it tends to go to a patient in zone 9. But not all zones are equal. In this zone, where there are nearly 350 waiting patients, only 175 hearts became available last year. By contrast, in zone 5 (which includes California and other Southwestern states) there are 380 eligible candidates and 357 hearts become available in 2012.

So geography matters, and so my friend’s friend is heading to Los Angeles in order to get on the transplant list there. Unfortunately, health insurance doesn’t cover those relocation costs, and the family is desperately trying to raise money to finance the move.

That they need to do so highlights one of the problems with the current system: those with money stand a better chance of getting an organ than those who do not. The organ allocation system managed by UNOS was ostensibly designed to combat this, avoiding a return to the dark days when groups like the Seattle God Squad decided which patients lived and which died on the basis of social worth.

The system works in the sense that medical need and patient suitability are the key factors that determine who gets an organ, not social worth. But money, which is itself often a measure of social worth, can be used to game the system. People with money can move to different geographical zones in order to increase the likelihood that they will receive an organ, they can hire top specialists who know how to make medical need look more urgent, and they can even sue in federal court in order to challenge existing allocation rules.

Sadly, there is little that we can do to fix this. Given the fundamental structural problems with access and delivery of health care in the US, the system is just about as good as it can get. Until every American has comprehensive health insurance, and until that insurance also covers associated costs of care and treatment (like moving expenses for transplant candidates), the wealthy will have a greater chance to get scarce resources like organs. For now, the rest of us will simply have to rely on luck and bake sales.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 29, 2013. It is also available on the WAMC website.]

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About Sean Philpott-Jones

A public health researcher and ethicist by training, Sean holds advanced degrees in microbiology, medical anthropology, and bioethics. He is currently Chair of the Bioethics Department at Clarkson University's Capital Region Campus and Director of the Bioethics Program of Clarkson University-Icahn School of Medicine at Mount Sinai, and Director of two Fogarty-funded programs to provide research ethics education in Eastern Europe and in the Caribbean Basin. Until his term expired in August 2012, he served as Chair of the US Environmental Protection Agency’s Human Studies Review Board, an advisory panel that reviews the scientific and ethical aspects of research involving human participants submitted to the EPA for regulatory purposes.
This entry was posted in Health Care, Policy, Transplantation. Bookmark the permalink.

One Response to Much Ado about UNOS

  1. Erica says:

    Thank you Sean, it is my mother that will be receiving a heart. I will see you at the fundraiser!

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