Our Deadly Health-Care Disconnect

Despite the billions we spend on programs like Medicaid, some desperately ill patients fall through the cracks.
by | July 26, 2012 AT 11:00 AM

An important part of our work is to look at health care from a financial and a policy point of view, but now it's turned personal. Fred Kuhn, a colleague at Governing, is in Florida with his parents trying to save the life of his brother. I am sharing this story because while policy analysis requires the development and careful examination of data, there are certain insights that can only be gained through looking at the actual experience of a single individual. Indeed, this was the value of a recent Wall Street Journal article in which the analysis of the cost of Medicare was brought into focus by looking at the case of one young man and his family.

Fred's brother is 53 years old, and his heart is just slowly deteriorating. He has been on disability for 12 years, and for the last 10 of those years he has had a defibrillator implanted in his chest. He has been in and out of the hospital over the last two years. He needs a heart transplant, but in the interim a device called an LVAD, which helps the heart pump, would keep him alive. Now he has been in the hospital for about seven months, and because of the heart condition he is having issues with his kidneys and his liver. (By the way, this is the same medical situation that former Vice President Dick Cheney found himself in; he got the LVAD, lived on it for over a year and got a transplant.)

An operation to install the LVAD gives Fred's brother a chance at life; his doctors say that without the operation he has no chance: He will surely die, perhaps within a week. And there's the rub. He has no private insurance coverage, and he's caught in some kind of weird Catch 22 within the Medicare and Medicaid rules. Since he's been on disability, he has Medicare, but that will only cover 90 days in a calendar year. After the 90-day period is up, a person has to be out of the hospital and out of care for 60 days in order to get the Medicare back, and of course he is not well enough to be out for a few days, much less two months. He has Medicaid coverage, the family can get the LVAD device donated, they've got a doctor who will perform the surgery pro bono, but not one of the half-dozen hospitals they've contacted will allow the surgery to be done in their facilities for the amount that Medicaid will pay. The issue, according to providers Fred has been talking to, is that Medicare doesn't pay much and Medicaid pays about 20 percent of that. If his brother had Medicare, the hospitals would take him, but he doesn't so they won't.

Someone from Fred's family apparently managed to get in touch with U.S. Sen. Marco Rubio of Florida to see if he could help. They've learned that he and Florida's other senator, Bill Nelson, are going to work on a bill to fix this particular glitch in the system. But that won't help Fred's brother. A fix will take years if it happens at all, and it will only patch up one piece of a system that is overly complex, incredibly hard to understand and does not achieve the outcomes we intend.

Fred says that as he tried to help his parents deal with the situation, he found that very few people know what the actual rules are. Larry Goolsby, director of strategic initiatives with the American Public Human Services Association, agrees that the wide variety of possible combinations of illness and income issues create a complex set of rules. "Either you fit the exact category in every way, or, if you happen not to, you're just out of luck," he says. This is especially true when, as in this case, both Medicare and Medicaid come into play, as Andrea Maresca, director of federal policy and strategy for the National Association of Medicaid Directors, points out. "The current structure is completely fragmented and does a disservice to those individuals who straddle eligibility for both programs," she says.

Medicaid provides health care to millions of people, and yet can seem worthless in a situation like Fred's brother's — despite the program's staggering costs. A recent report of the State Budget Crisis Task Force listed Medicaid as one of six major threats to the fiscal sustainability of the states, noting that "Medicaid, the single largest spending category in most state budgets, is growing faster than the economy and faster than state tax revenues." It is hard to understand how Medicaid's value for some individual patients who are in desperate need can be so low that the hospitals will refuse to take them and yet the costs for states are so high and are escalating so quickly.

Many of us in the realm of public policy tend to talk in abstract and theoretical terms, but there is a certain morality in stark clarity. Talk to a senior analyst and more often than not you'll find that simple and clear makes them queasy. But here's the stark truth: Any of us could be where Fred's brother is. Nearly two-thirds of all personal bankruptcies are related to serious illness, and most of those who file are well educated people who had middle-class jobs and insurance. In America today, if you're gravely ill we might be able to give you a chance at life, but only if you can afford it. If you don't have money and you don't meet the complex requirements of the government programs, you're condemned to death. A prisoner on death row will get more due process. You'll be dead broke.