Medicare Part D: Damage

by hilzoy

I remember the day my attitude towards William Weld shifted from a mild dislike to active antipathy. It was back in the mid 80s, when Weld was Governor of Massachusetts. He had recently proposed a drastic change in Massachusetts' housing policy, which, many people feared, would lead to a lot of people winding up homeless. (I think it was a drastic curtailment of section 8 funds, but I could be wrong. I was spending a lot of time with housing policy wonks back then -- a bunch of very smart, very well-informed people, mostly centrists, to whom good evidence-based policy mattered a lot more than ideological correctness -- and they were all terrified about what the change would do.) One day Weld was asked about the possibility that his program would leave a lot of families homeless, and he said, in this absolutely cavalier way, that if it turned out that a lot of people were thrown out onto the street, he'd just change the program back the next year. (The 'cavalier way' is crucial here: I could imagine someone expressing doubts about the program, and explaining why he'd chosen to support it in a way that did justice to the problems it might cause. That would not have disturbed me in the same way. What bothered me was that Weld's response was not thoughtful; it was flippant.)

As though just changing the program back again would be enough. As though that would make things all better again.

I thought: consider a family who were, as they say, working hard and playing by the rules, who were just barely making ends meet with help from Section 8 (or whatever it was), and who, as a result of this change, lost their home. Consider the effects on their children, who have to try, somehow, to get their homework done in a van or a homeless shelter. Consider the fights that might erupt between the parents as a result of the stress and misery of trying to figure out how to keep their family together on the streets. Marriages break up over less, and it's hard to imagine that the stress alone wouldn't take a serious toll on everyone around, including the kids. Consider the humiliation, for the parents, of having to take their kids to shelters and food banks, and the cost to the kids whenever one of their classmates asked: so, where do you live? (This is supposing they stayed in school. If not, consider the cost to them of dropping out or missing large chunks of school time.) Consider the impacts on their health of life on the streets. Think of all the damage that living on the street would do to a family.

Now imagine William Weld saying: Oops! my bad!, and changing the program back. This family might reapply for assistance, and in a few years might get it. But an enormous amount of damage would have been done to them in the meantime. Life on the streets is not good for anyone, especially for children. You don't have to be some sort of miracle of empathy to recognize this. And the contrast between the thought of that damage and Weld's completely cavalier attitude to it just enraged me.

I feel the same way about Medicare Part D. Because a lot of the damage that will be done to people as a result of Medicare Part D is like the damage done to a family by becoming homeless in this respect: you can't just wave a magic wand and make things better again once you realize your mistake. The damage is permanent, and it cannot be undone. And that makes the thoughtless, cavalier way in which this policy was written and adopted completely outrageous.

That Medicare Part D can do irreversible damage is obvious in some cases. In an earlier post, I quoted this:

"In one case, a man whose leg was recently amputated cannot get Medicare to cover the antibiotics he needs to stop a life-threatening infection, according to lawyers for Community Legal Services. In another case, a woman with lung cancer was turned away from her first chemotherapy treatment because of a Medicare mix-up."

Obviously, if you don't get the antibiotics you need to stop a life-threatening infection, you might lose your life. Equally obviously, not getting chemotherapy as soon as possible could cost you your life. And losing your life is, of course, irreversible.

But there are a lot of other diseases in which not taking your medications can make you relapse, and though the relapse is not necessarily life-threatening, it does alter your body and your life in ways that are hard or impossible to undo. Some of the most severe mental illnesses, for instance, have this property: that each relapse not only wreaks havoc with your life directly, but also sets your recovery back a lot, and (often) makes the level you can recover to worse than it would have been otherwise.

Take schizophrenia, for instance: an acute episode of schizophrenia is extremely serious in any case, and it can be life-threatening. For a schizophrenic whose symptoms are in remission, and who has been trying, laboriously, to live a normal life, finding herself (to use the symptoms from an episode I observed fairly closely) rolling around naked on strangers' lawns in February, talking to mirrors, breaking into the office of someone she had fixated on and covering his office walls with tiny scribbled writing whose meaning was clear only to her, and finally being convinced to commit herself voluntarily is a huge, incalculable setback. (It was also fairly hard on those of us who were involved in trying to get her help.)

In addition, though, according to Professor Robin Emsley, MD, head of the Department of Psychiatry at the University of Stellenbosch, South Africa:

"We know that every time a person with schizophrenia relapses, it makes recovery slower and increases the frequency of future hospitalisation. The illness can also become more difficult to treat and -- in some cases -- resistant to treatment altogether. Therefore, it is essential that we minimize the number of relapses as much as possible early in the course of the disease."

That is: suppose a schizophrenic is denied antipsychotic medication under Medicare Part D, and suppose that person has a psychotic break. Even if people manage to get help for that person before she harms herself or anyone else, and even if that help manages to stabilize her, so that her disease is in remission again, her entire prognosis will be worse than it was before. Each acute episode of schizophrenia makes further episodes more likely, it makes those episodes harder to treat, and it generally lowers the level of mental health to which the person can be restored, even with the best of care.

This is damage that cannot be undone.

The same is true of major depression and (perhaps) bipolar disorder. It's not just that a major depressive episode can lead people to kill themselves, or lose their jobs, or destroy their friendships, or ruin their lives. They alter your brain, in very bad ways that cannot be reversed. Both depression and (perhaps -- the evidence is less clear) bipolar disorder seem to involve a process known as 'kindling', which was first discovered by experimenters researching seizures in rodents. Apparently, if you shock a rat enough to give it a seizure, it takes less electricity to produce a seizure in that rat the next time you try. Eventually, if you take this process far enough, the rat will begin having seizures on its own, without requiring any shocks at all.

Likewise, depression and (perhaps) bipolar disorder seem to start out requiring some sort of stress to trigger an episode; the more episodes you have, however, the less of a trigger you need, until eventually you don't require any trigger at all. (At this point, depression is said to become "autonomous". The idea of a mental illness being transformed into an autonomous thing in your head seems to me to have just the right tone of Sorcerer's Apprentice-like horror to it.) Each episode of depression also seems to make future episodes worse, and to raise the level of antidepressants needed to treat them.

This means that if someone with depression or (perhaps) bipolar disorder is denied the medications she needs, and as a result has an episode of depression or mania, not only will that episode cause all the usual problems, it will make her more likely to have future episodes in the future, and it will make those future episodes harder to treat. Again, it's not just the portion of her life consumed by an episode of mental illness that will be affected; it's her entire future prognosis.

These are just two examples of cases in which the damage done by interrupting someone's access to medications cannot be put right by fixing the prescription drug policy. It's like heartbreak, or a conviction for murder, or having the wrong limb amputated, or seeing the look on your spouse's face when she finds you molesting your child: there is nothing you can do that will put things back together the way they used to be. Atonement may be possible when you inflict this sort of damage on someone else, but saying 'Oops! My bad!' really doesn't even begin to cut it.

And this is probably what bothers me most about Medicare Part D: that the people who drafted and implemented it seem to have been so cavalier about the damage a bad program could do to those who use it, especially to those who do not have the means to buy whatever medications they need for themselves.

***

About the implementation: TNR's blog, The Plank, has a delightful list of warnings the government received about the very problems they have now encountered. Since I don't know whether this is available to non-TNR subscribers, I reproduce a decent-sized chunk of it:

"Here's what Jeffrey Crowley, director of the Health Policy Institute at Georgetown University, told the Senate Select Committee on Aging in June:

"However, given that the most vulnerable segment of the Medicare population is being moved into the Part D prescription drug program first, with not a single day of overlapping drug coverage by Medicaid and Medicare, it strains plausibility to believe that this transition can be perfectly seamless. There is an urgent need for Congress, prior to January 1, 2006, to establish a short-term, onetime transition period so that individuals can continue to rely on Medicaid if they are unable to access appropriate drug coverage through Medicare, for the first six months of 2006."

Dr. Carl Clark, CEO of the Mental Health Center of Denver, made the same essential point in March of 2005:

"[W]e're concerned about the required transition of dual eligibles to the new part D, drug benefit and here's why. ... [A]lmost 40 percent of the 6.5 million dual eligibles have cognitive impairments and mental illnesses. Dual eligibles are twice as likely as others to have Alzheimer's disease and, thus, many of these people may lack the capacity to manage the automatic enrollment process and ensure that they get the meds that they need."

And then there was this warning, issued all the way back in January of 2005, via an issue paper by the Henry J. Kaiser Family Foundation:

"The transition of prescription drug coverage for dual eligibles from Medicaid to Medicare represents a major shift in care for a particularly vulnerable population. Given their poorer health status and heavier reliance on prescription drugs, special attention needs to be given to assisting duals in the transition, especially since the consequences of gaps in coverage and missed medications can be severe for this group. Efforts to address these issues need to be a priority of implementation to assure as smooth a transition as possible for Medicare's poorest and often sickest beneficiaries. These could include maintaining Medicaid as a backup source of coverage on a temporary basis or devising special outreach and education efforts aimed at dual eligibles and the people who help them with health care decisions.""

It also mentions the GAO's prescient report (pdf) from last December, warning about a lot of the problems we're now experiencing, which contains a delightful response by Mark McClellan, head of the Center for Medicare and Medicaid Services, in which he first implies that the GAO only has issues with his preparations because it is asking for "a standard of absolute perfection for this transition", and then says: "CMS has established effective contingency plans to ensure that dual-eligible beneficiaries will be able to obtain comprehensive coverage and obtain necessary drugs beginning January 1, 2006." (Ha ha ha.) The GAO summarizes his comments and its response this way:

"In its comments, CMS objected to any implication that it has not taken all steps to keep potential problems to a minimum. Furthermore, the agency asserted that its contingency plans fully address the problems we describe and that they will ensure that dual-eligible beneficiaries will have immediate access to needed drugs. While we credit CMS for taking steps to mitigate potential risk for dual-eligible beneficiaries, we believe that the agency’s complete confidence in contingency plans that have yet to be fully tested, publicized, or implemented may be premature. Our report provides valid reasons why the effectiveness of these plans is uncertain at this time."

Given the number of prominent warnings from credible sources, I don't see how it's possible to maintain that the people in charge of implementing this plan just didn't see these problems coming. Since the date the plan went into effect, they have had to make some pretty serious fixes, including increasing the number of people answering their 1-800 number from 150 to 4,500. I don't know about you, but the discovery that they underestimated the number of people needed to staff their help lines by a factor of 30 suggests a certain lack of attention to detail -- especially when you consider that when rolling out a program like this, the obvious thing to do is to err on the side of overstaffing your help lines. And that's not counting the number of fixes that other parties have had to make -- all those states who have declared health emergencies, for instance.

***

About the program's design: as I've said before, one of its most bizarre features is this:

"Importantly, the health plans are permitted to drop drugs from their formularies at any time with 60 days' notice; patients, however, are only permitted to change plans once, at the end of the year. Therefore, although enrollees will choose plans based on the drugs covered, they may find one or more dropped from the lists as the year wears on. Many patients may end up paying full price for drugs they thought would be covered.

Healthcare professionals expect the plans to exploit their power over formularies very aggressively to keep costs controlled."

This means that patients who choose one plan over another based in part on the fact that it covers the drugs they need have no assurance whatsoever that those drugs will not be dropped two months after they enroll. But they will be locked into that plan, which is now useless to them, for a full year, during which time they will have to pay full price for those medications. If they don't have the money, they will either have to try a new drug, which may or may not work for them, or just quit treating their disease. This, like the implementation problems for dual eligibles, is a recipe for forcing people to go off their medications, and thus for suffering the damage I described above.

Then there's the delightful "doughnut hole". Quoting from Golden State again:

"When a government program is defined in terms of a void at its core, you know it's trouble.

In the case of the new Medicare drug benefit, that void has been evocatively named the "doughnut hole." This is a gap in coverage beginning when the full cost of an enrollee's prescriptions for a year reaches $2,250 (including co-pays, a $250 deductible, and the amount the customer's health plan pays for the drugs), and ending when the enrollee's own out-of-pocket expenses reach $3,600. After that point, Medicare will pay 95% of qualified drug costs to the end of the calendar year, a so-called "catastrophic" benefit.

The doughnut hole was designed to limit the new program's burden on taxpayers. But its complexity is one reason that fewer than 4 million seniors eligible for the stand-alone drug benefit have enrolled so far, well short of the 23 million who are eligible.

Because of the doughnut hole, a plan that appears at first blush to be an inexpensive option - one carrying a low monthly premium, for example - may be the most costly in reality. That's because some plans with high premiums provide discounted drug coverage even within the doughnut hole. Patients who know their prescriptions will cost more than $2,250 a year might save money by choosing an option with a $60 monthly premium and gap coverage, instead of a plan with a $5 premium that consigns the member to doughnut hole hell."

This is part of what makes signing up for Medicare Part D so confusing: you need to take into account not only the (unknowable) formulary and whether it includes the drugs you take, but also the tradeoffs between monthly premium and size of doughnut hole. When you think about this confusion, consider that Medicare is for senior citizens, and thus includes a disproportionate number of people with Alzheimer's or other cognitive impairments. Imagine a slightly demented senior citizen without computer skills trying to make sense of all this. It's not pretty.

Moreover, here's a question I don't know the answer to: most plans either don't cover drugs at all or cover only generics when your drugs have cost over $2,250 but your out-of-pocket spending is less than $3,600. Does this "out-of-pocket spending" include spending for drugs not included in your plan's formulary, or money you spend for drugs you discover you can buy more cheaply outside your plan? I can't find the answer to this question on the government's Medicare Part D website, but it matters.

If, for instance, I had to enroll in a plan, I would, if I could possibly afford it, pay for my present anticonvulsant medication out of pocket, even if (like most plans) the plan I enrolled in didn't cover it. And if I managed to find a plan that did cover it, but that plan dropped it from its formulary halfway through the year, I would also just buy it on my own, if I possibly could.

If my spending on that medication counted towards my "out-of-pocket costs", then by buying this medication on my own, I would be marching across my doughnut hole, and hastening the day when Medicare would pick up 95% of my prescription drug costs. If not, however, then the doughnut hole is even bigger than it seems. For in that case, when my plan says that it does not cover the cost of the drugs I need once I've taken $2,250 worth of medications but before my out-of-pocket costs reach $3,600, it is not counting the cost of my anticonvulsants, or any other off-plan drugs, as "out-of-pocket costs". I will, therefore, be stuck with the costs I incur while in the doughnut hole, plus the costs of any medications I take that are not covered by my plan. (And, as I said above, since medications can be dropped from a plan with 60 days notice, but patients are stuck with their plans for a year, I could find myself having to pay for my medications even if I was as smart and diligent as I could possibly be, and had chosen my plan specifically because it covered all my medications.)

[UPDATE: I asked this question in the comments to Michael Hiltzik's Golden State piece, and got this answer from him:

"Hilzoy: The answer is NO. Money spent outside the enrollee's plan's network of pharmacies does NOT count toward the out of pocket total. So, yes, you have to pay the plan's price, or spend more time in doughnut hell. By the way, money spent on drugs that are off the plan's formulary also doesn't count."

So, essentially, enrollees would have to pay the $3600 in out of pocket costs plus the price of any medications their plan didn't cover, or which they could buy more cheaply elsewhere, before Medicare would start picking up 95% of their costs. Great. END OF UPDATE.]

This is a plan that might as well have been designed to be bewildering to the people who need to use it; to leave open huge possibilities for major disruptions in those people's lives; and in so doing to cause the kinds of damage I described above. Whether or not you think it was actually designed to be bad, it seems pretty clear to me that no one who was not cavalier about that sort of damage -- the damage caused by denying a schizophrenic her antipsychotic medication, for instance -- could possibly have signed off on this bill. It's just that bad. And the members of Congress who voted for this bill are people who, on the most charitable interpretation possible, couldn't be bothered to find out what its effects on the most vulnerable of their constituents would be. People like that do not deserve anyone's vote.

***

The problems with this legislation are also connected to the Republican party's present problems with corruption. The Republican party has been running a pay-for-play system, in which, in exchange for contributions to various Republican causes, industry groups got to have very heavy influence on, and in some cases actually to write, legislation affecting their industries. In this case, the Medicare Part D legislation was heavily influenced by lobbyists for the insurance and pharmaceutical industries, and it clearly reflects their interests, not the interests of Medicare beneficiaries.

Any time lobbyists get to dictate the terms of, or actually to write, legislation, other people's interests get sacrificed. Sometimes these sacrifices are hard to spot -- for instance, when regulations on some type of pollutant are gutted at the request of industry lobbyists, it's not always obvious that the asthma some child suffers is the result of legislators' acquiescence in those requests. This time, though, the results of corruption are clear. The insurance and pharmaceutical industries got what they paid for. But this happens only when legislators, who are supposed to stand up for the interests of all their constituents, allow themselves to be bought. And as long as we allow people who can be bought to represent us, disasters like Medicare Part D will continue to happen.

Hopefully, at some point, Americans of all political persuasions will draw the line, and say: we will not vote for people who come with a price tag attached. If we draw the line, parties will have to think long and hard before nominating such people. If, on the other hand, we continue as we are now, our representatives will continue to sell us out, and people like the residents of Dayspring Village will pay the price.

Comments

[hilzoy]

And for a case of the problems this is causing, see this comment, and tell me that the people who wrote and implemented this monstrosity deserve to stay in office.

It breaks my heart. And it was not just predictable, but predicted.

[john miller]

TRhank you again. Obviously this was the post you were refrring to in the previous thred.

BTW, bi-polar disorder is still very much misunderstood, and I appreciate your emphasizing the "perhaps" nature of it.

FWIW, I work in the conventional health insurance field working with patients who require assistance in accessing appropriate mental helath care. Medication advances in treating bipolar have been very effective the past few years. 20 years ago a person with severe bipolar could probably count on having to go inpatient at least every 5 years. Now, with appropriate medicine and monitoring, they may be able to avoid that for 2-3 times as long.

The problem for bipoalrs is when they become psychotic. Then, there is a high likelihood that the same pattern seen in schizophrenics applies.

And again, because bi-polars tend not to require structured living, they can easily be too far gone before the lack of medicine is spotted.

[janinsanfran]

One of William Weld's housing "improvements" changed my life for nine years very obviously and actually, permanently. Under his watch, the Commonwealth began to house the unsupervised, de-institutionalized mentally ill with senior citizens. As a result, my mother-in-law's secure housing became so dangerous that we uprooted her to house her near us and ended up caring for her for nine years at tremendous wear and tear on all parties.

Medicare Part D is a crime. In San Francisco, buses are covered with ads in Chinese for various HMO's trying to capture the new market -- I can't imagine how anyone is making any sense of it.

[Brad R.]

It was back in the mid 80s, when Weld was Governor of Massachusetts.

Weld wasn't governor in the mid 80s.

[Vinel]

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