Under the rules for Medicare Part D, there are six protected classes of drugs: antiretrovirals, anticonvulsants, antidepressants, antineoplastics, and immunosuppressants. For most classes of drugs, the Centers for Medicare and Medicaid Services (CMS) only requires Part D insurers to cover two drugs, but for those six protected classes, insurers must cover all drugs available in those categories.
But apparently now they want to change that so that only antiretrovirals, antineoplastics, and anticonvulsants are protected. Sheri wrote a good post about it over at her blog, which is what alerted me to the issue. This worries me as a consumer of psychiatric drugs and as someone whose well-being and perhaps even life depends on immunosuppressants.
The only psychiatric drug I take these days is an antidepressant called nortriptyline. It’s an old drug, cheap, so it probably won’t be dropped from my insurer’s formula. But there are lots of newer antidepressants out there, particularly SSRI’s and SNRI’s, that are more expensive and not yet available in generics. There are lots of people who depend on those drugs to manage depression, bipolar, OCD, and other psychiatric illnesses.
Many people also depend on antipsychotics to treat their mental illnesses. Like antidepressants, antipsychotics have been around for many years, so there are old ones available for cheap. Unfortunately, they often cause unbearable side effects like extreme sedation, akathisia, and tardive dyskinesia. Long term, they can cause significant weight gain, diabetes, and blood clots. The second-generation antipsychotics (also called atypical antipsychotics) tend to have fewer side effects, but they’re much more expensive–some cost as much as $600 per month.
I also rely heavily on immunosuppressants to keep my UC under control. The Humira and 6-MP are the only drugs that have helped push me to somewhere near remission, but they’re very expensive: almost $3000 a month if they weren’t covered by my insurance. And even though it’s in a protected class, my doctor and I had to fight for two and a half months to get the 6-MP covered. Then when it gave me terrible nausea, we had to fight for another 7 weeks to get Zofran covered.
Without the immunosuppressants, I would get much sicker. My immune system would kick into overdrive again. It would start attacking my colon, eating holes in the mucosal lining until my entire colon was a continuous ulcer. I would be in excruciating pain that even the strongest painkillers couldn’t touch. I would have severe diarrhea, dehydration, weight loss, and bleeding. I would require intravenous fluids and blood transfusions just to keep my blood pressure high enough to keep me alive. But none of those interventions would save me; my immune system would keep eating away at my colon. Eventually, the blood loss would be too much too fast, and they wouldn’t be able to infuse enough blood to keep me alive. Or my bowel would perforate, and the waste in my colon would leak out and spread a severe infection through my abdominal cavity. Whatever the exact cause, I would die slowly and painfully.
There is an exception: “Unrestricted access to all drugs in a category or class of a drug is necessary where a beneficiary initiating access to a drug class would need to receive that access within seven days and, if they did not receive access within seven days, the lack of access would be expected to result in the patient’s death, hospitalization, incapacity, or disability.” Oh, great, I’m glad to know I can only get drugs covered if my doctor says I’ll shit the bed in a week without them. (And by “shit the bed,” I mean it in the colloquial sense, dying, not the UC shitting the bed that I’ve done more than once.) It’s A-OK that I suffer intensely until I’m about to kick the bucket. And does that mean that I’d only get approved for, say, one dose of Humira because if I improved, then I would no longer be dying in 7 days? Would I then have to wait until I had a week to live again to get the next dose? Clearly the people writing these rules have never dealt with a chronic illness. See, ulcerative colitis is rarely fatal if it is treated, but it can definitely kill you if you can’t afford to spend $3000 on drugs that CMS has decided your Part D insurer might not have to cover anymore.
Immunosuppressants are what keep that from happening. They have lots of nasty side effects and don’t give me the same quality of life as someone without UC, but at least I’m not crapping myself to death. But if CMS changes the rules and allows Part D insurers to cover only 2 drugs in three of those protected classes, then the above scenario could happen. And I know for a fact I’m not the only one who would get screwed over by this.
My favorite part is that one of CMS’s reasons for dropping immunosuppressants, antidepressants, and antipsychotic from the protected classes list is that they claim these drugs are overutilized. Personally, I agree that that’s often the case with psychiatric drugs, but how is making these drugs unaffordable to vulnerable people a good way to solve the problem? You’re penalizing patients, who have little control over the system, instead of the doctors you claim are overprescribing the drugs! It makes no sense. And immunosuppressants? Overused? Are you serious? I don’t know ANYONE who wants to be on these drugs. Your hair falls out, your bone marrow stops producing enough red and white blood cells, you’re so fatigued you can barely stand up, you’re vulnerable to every stray illness you come into contact with, and you know the drugs you’re taking can cause brain infections, lymphoma, and death. I guarantee you, nobody wants to be on these drugs. No one asks their doctor for immunosuppressants, and the doctors I’ve dealt with all prescribe them only as a last resort.
So WTF, CMS? Stop putting people’s lives in jeopardy.
Another Hope Entirely 