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Old Thu Mar 21, 2013, 09:50 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Brian,

This is a very unusual situation and a tough one to address in a useful way.

The cost of treatment for bone marrow failure, and a transplant if necessary, can be astronomical for the uninsured, to the tune of tens of thousands of dollars for ongoing treatments, adding up to hundreds of thousands of dollars over time. But it depends on who is doing the counting and of course exactly what types of treatments are needed.

A very common treatment for aplastic anemia in adults is called ATG. Perhaps some of our forum members can provide information about the amounts they were billed for their own ATG treatments, but most cases in the U.S. that we've talked about here have been for patients with insurance coverage.

TIME Magazine had a long and extensively researched article on health care costs (particularly hospital costs) in their March 4, 2013 issue, named Bitter Pill: Why Medical Bills Are Killing Us. It reported that most hospitals set prices without any oversight and without having to relate them to actual costs, that they hide these prices from the public, and that they charge people based on those rates while expecting that most people will get huge discounts and pay much less. People on Medicare or with private medical insurance pay only their share of the much lower rates that the government or the insurers have negotiated with the hospitals, leaving only the people who don't fit those categories with impossible-to-pay bills. In many cases the bills can be negotiated way down, but most people don't have the wherewithal to do that, and even a negotiated bill may not reflect the actual costs of the medical care. The article also said that well-known treatment centers with excellent track records tend to drive the hardest bargains, because they have more clout. Treatment at MD Anderson could cost more than at other centers for exactly that reason. There are no doubt other sides to this story, but the complexity and the fact that it involves government policies, politics, lobbying, and so much money make it very hard to understand what any one patient can do about predicting or paying their health care costs.

The TIME article gives sample treatment costs and billed prices as examples, but as you'd expect none of their examples are about aplastic anemia. Perhaps you can walk into a treatment center in advance and ask about the average costs for particular types of treatments for an uninsured patient. It's bound to be beyond the means of almost any individual. And some treatment centers may not take uninsured patients.

I'm not sure where that leaves your client's family friend. There are organizations that help with medical costs (perhaps a group like United Way of Greater Houston could help you identify them), organizations that help transplant patients do their own fundraising (example), and organizations that answer medical billing questions (example). Even an organization that can't help directly might offer referrals to others who might. Another approach might be to study her legal options for care in the U.S. and the enforceability of the form she signed. And you mentioned the possibility of traveling outside the U.S. Maybe she would be eligible for care in her native country. To learn more about Global Medical Tourism you might check out Patients Beyond Borders.
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