As of October 1, I am officially a Medicare recipient. After two years of Social Security disability, you are automatically enrolled in Medicare. I reviewed my choices in a previous post, and ended up choosing a "Medicare Advantage" (part C, for Medicare geeks) plan offered by Humana for several reasons. First, and ultimately most important, Mayo is in-network for this plan. Anyone who cares should watch the recent Ken Burns documentary on Mayo, which does a good job of explaining the difference between my experience as a patient at Mayo and my experience everywhere else.
Second, the plan, like other part C plans, has an out-of-pocket max for any outpatient procedures. A quick review: Medicare part B pays 80% of outpatient procedures. My future life might include outpatient procedures (infusions or even injections) that could soon total $1 million (or merely $500,000) each year. One or two hundred thousand dollars each year out of my pocket. And these would likely extend my life, so I could keep up the payments. What a system!
Or I could be treated with pills or capsules, as I am now. That's Medicare part D, of course. Totally different deal. There's a deductible, a limit, and the famous "donut hole." But my meds blow through all those things the first month, and I enter the "catastrophic" coverage category. In this category, I pay 5% and the feds pay 95%. Of whatever the pharmaceutical companies say they need--Congress specifically prohibited negotiation of these fees. Five percent doesn't sound like much, but it's about $20,000 to me for the drugs I'm currently taking--not to mention a huge subsidy to pharma, courtesy of Uncle Sam.
Anyway, I made the transition this month. Not without trepidation--but it all has gone smoothly so far. It involved some phone calls, to my previous insurers, to Humana, and to my local hematologist's practice. Of these, the surprise was that the local hematologist's office had an insurance coordinator who was actually quite helpful. The pills I take (Ninlaro and Revlimid) don't come from the Rite Aid down the street--they are supplied by a specialty pharmacy. Every month, I arrange for the next shipment to come, which involves about a half hour on the phone with a pharmacy rep, followed by special instructions for Revlimid given by an RN. The drugs are generally delivered the next day, signature required. I learned that I had a choice about which specialty pharmacy to use, that my hematologist's office had a preference (Kroger!), and . . . something else.
She could help me get a "grant" from a "foundation" to help with my massive copays. Just like that. In fact, she said she'd make a few calls and get back to me. An hour or so later, she called back to say she had in fact secured me a grant for $10,000 from the HealthWell Foundation.
That was easy. Does anybody smell anything? The HealthWell Foundation is indeed a 501(c)(3) charitable foundation that gives a very high percentage of the money it raises directly to patients like me. There are a number of other foundations just like it. I haven't dug deep yet, but it sure looks as though these foundations are primarily funded by pharmaceutical companies. They benefit the companies by providing a tax deduction, but mostly by encouraging patients like me to choose more expensive drugs that would otherwise leave us with huge deductibles. A side benefit might be to reduce the political pressure to lower prices. It's not affecting my choice, because I am fortunate enough to be able to afford the choice I've made (and frankly the other options are really expensive, too). Ultimately the tumor cells will make the choice when they stop responding to the Ninlaro or the Revlimid (or both).
The latest labs say that's not happening yet, probably. It's true that kappa is up a little from its all-time (post MM) low in June, but it would take a much bigger increase to get the hematologists' attention. The kappa/lambda ratio is 2.3, still quite low. Platelets and red cell counts are still lower than ideal, but not so low that they are causing any real problems. Otherwise things look great.
