a novel by Elizabeth Langdon Andrews



Posted on April 3, 2017 at 12:20 AM



First, thanks for your messages during the week!   These are more meaningful than you can imagine!


Many of you asked about the chances of finding a cure. The short answer is that there’s no cure on the horizon, because Parkinson’s is not a disease – at least, not in the way we think about diseases.


Let me explain it this way. Suppose PD is a barrel full of mixed jelly beans. You and I go in, and we each grab a hand full of the beans. We both have “beans,” (“beans” being PD symptoms, in this example), but we will never grab exactly the same mix. We could repeat the same process all day long, and our “PD” (jelly beans) would never be made up of exactly the same colors (symptoms). So you might say that PD is “perfectly” customized, which is a real problem when it comes to treatment, let alone a cure. Like Forrest Gump’s box of chocolates, you never know exactly what you’ll “get” --other than chocolate. Even then, you might open the box and find a misplaced Easter Peep or some other abnormality that the “chocolate cures” won’t help. I know; it’s complicated.

For now, the prime research focus is to find treatments that enable patients to “live with” Parkinson’s in much the same way one “lives with” diabetes. And great strides are being made in that direction! Someday, we’ll have treatments that will halt the disease in whatever track it’s discovered. Before then, we’ll have drugs that ease the worst symptoms. Tragically, however, a good 2/3 of the PD patients in the USA are on Medicare – which either doesn’t cover “label” drugs, or prices them out of most people’s reach. Until then, we do the best we can and move on. Which brings us to this week’s saga.


If you’re already “on” Medicare, you can skip this paragraph; if you aren’t, then you’d best listen up. Hardly anyone pays attention to Medicare’s limitations; most people just assume that it’s like any other insurance, and that it will likely pay for the drugs you need. Think again: Medicare doesn’t do anything of the kind, unless you’re either a magician, a billionaire (in which case you don’t need Medicare to begin with), or else you’ve figured out the fast lane through “hell and half of Georgia.”

Take PD for example: the gold standard drug is called SINEMET which is a derivative of L-dopa. If you saw the movie AWAKENINGS (Robin Williams) you know how magic a potion it is (and if not, hie thee to Netfliix and watch it!). Either way, recall my description of a duct-taped mummy on a bad trip ( last week’s story). Well, the bottom line is that SINEMET sets everything right (for a few hours at least, but I’ll get to that part later). Now for the kicker: Medicare generally doesn’t cover SINEMET! Yes, you read that right.


What Medicare covers are the generic brands of all drugs, period. Yes, some newer drugs without generics are technically covered, as are a few “label” drugs, but the costs are so outrageous that even well-off people can’t afford them, let along most of the “other” 95%. What’s worse, if you happen to luck into a Medicare plan that covers a non-generic drug that you need, your plan might cover it one month and not the next. Why? Tell me and we’ll both know.


As you’ll recall from last week’s lecture, generics are ‘way too imprecise to treat Parkies with anything near optimum function. So that’s what set off last week’s roller coaster: In my attempt to find a generic that would provide even a modicum of benefits, NOT for SINEMET, but for the drug that “boosts” SINEMET (like most Parkies, I must “boost” SINEMET for it to work properly), I crashed. The drug I was trying to convert to generic is called REQUIP. Its non-generic Medicare price is between $500-$600 a month, even if you can get it through Medicare, which you usually can’t. So it’s generic or nothing for me. (I’ll talk about other drugs when we get to that part of the story, but for now suffice to say that I’m allergic to a good many of them – for starters).

Anyway, you’ll recall from last week that my pharmacy “blended” the generic I was “trying out” (meaning that they gave me two different brands); what’s worse, they accidentally mislabeled one of the bottles, so I didn’t know I was shifting to a new brand in the middle of the stream. By pure luck, I had used the “good” brand first; then, when I took the BAD brand without knowing I’d done so, I not only crashed, but I had to waste an entire week of my “quest” to get back to square one. It’s like never being able to get out of jail in a Monopoly game gone tragic. So, I spent the whole week getting “out of jail” and trying to drug the “mummy” out of commission.


Cliffhanger over: I was successful enough to resume my quest and to remain functional all but about 2-3 hours in 24 – that is, if you count insomnia as functional. But I still MUST find the two drugs I need, or I might as well plan my memorial service. At least my cemetery plot is paid for (lame bid for a laugh there).


But there’s no point getting ahead of the game, because I still need to focus my energy toward finding a generic brand of REQUIP that works rather than crashes. Only then can I tackle the big kahuna: finding SINEMET.


The bad news is, I don’t know if a “good” generic for REQUIP exists, and to find it, I have to risk another “crash” when I haven’t fully recovered from last week’s yet. So that’s what I’ll be doing this week: trying out another generic REQUIP. There just has to be one out there. There has to be. Maybe I’ll find it this week! Or maybe I’ll have a worse crash than before. I have no idea, but I have to keep moving – because my time runs out on 1 July, when Medicare takes charge of my life. Literally.


Watch this space next Sunday if you want to know what happens.



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1 Comment

Reply DB
1:29 PM on April 2, 2017 
Linda, thanks for explaining this. I have given up battling Medicare for a drug that I think is more effective than the generic that is covered (with co-pay). But my consequences are NO where so significant as yours.
When you go on Medicare, will you buy the state-sponsored supplemental insurance (called Pomco)? If you haven't already done so, check with Pomco to see whether they will pick up difference for your preferred drug (call state benefits insurance in Nashville, not local UT benefits office).
Thinking about you and sending good wishes every day. Dorothy