Last week I received a phone call from my pharmacy telling
me that my insurance no longer covers my MS disease modifying medication. One
year ago, I read an article about expected price increases for MS disease
modifying medications that were insane given the history of MS medications. Tonight, the President says yet again that reducing high drug prices is one of the top priorities of his administration. Neither he nor congress (both parties) have made
any progress on this with any results. I
don’t know and can’t figure out what the strategy is to accomplish this. I hope they can, but I fear it will be on the
backs of individual patients. I fear we’ll
lose medication options and our doctors will not be at liberty to prescribe
what is appropriate for us. While congress and pharmaceutical companies bicker, we as patients will suffer the consequences from lack of care and disease progression.
The medication I take is one of the first ones to come on
the market in 1996. It came in a dosage
of seven injections per week. In 2015 they came out with a version that is
three injections per week and has a new patent with all of the benefits that
come with precluding generics and competition. Same formula, different
dosage. Both are astronomical
expense. Generic is $60,000 per year. Non-generic
runs $73,000-$89,000. My insurance has covered it for the last nine years and
has now decided it won’t cover it at all – name brand or generic. All of the other medications cost more.
I’m now in the position of needing to work with my doctor to
try new medications to replace the one that’s been out the longest and has
worked for me. In order to alleviate
problems I was having with seven injections per week, I tried two medications a
few years ago and ended up with non-stop nausea from one and hives all over my
body from the other. It’s daunting to embark on this effort when I have a lot
of other things going on in my life to tackle.
Regardless, I’ll do it. Living without proven medications isn’t an
option for me. Hundreds of years have
proven that when living with MS going without medication leads to faster
disease progression and disability. It’s
not worth the risk.
Know that pharmaceutical companies are making big profits
for their stakeholders. They don’t have
a track record of reducing prices to the customer over time. When I started with
this medication, it was $36,000 per year. Last year it was $76,000 per year. They
claimed years ago that the price would go down once a generic was available,
but it hasn’t. And now, I’m told that my
insurance won’t cover it at all. Same medication, different politics.
The medication I take is the least effective and has the
fewest side effects. It works for me. I
haven’t had a relapse in six years. Yet now I’ll need to try medications that
have higher efficacy and more severe side effects including liver damage and
even death for some. It’s scary and I
think reasonably so. My approach has
been to take a medication that works with the least side effects. Insurance is not going to allow me to do that
anymore.
I have three months of medication in my refrigerator to tide
me over. I have this because over the course of two years I've stretched my medications to allow a stockpile. I'd prepared for emergencies and wanted to be covered if I wasn't able to get my prescription filled. I’ll see my neurologist in a few weeks and will discuss my
options. Until then, I’ll do my research
to see what my options are. Options I’ve
identified are:
- Appeal the insurance decision. I appealed and won a couple years ago. It took six months with no guarantee that I would win. I went without any medication for six months. It was worrisome and frustrating, and that’s not conducive to good health when trying to reduce stress. I did it, but I’m not sure I’m up for it again right now.
- Go without medication. Before these medications were available, people with MS were likely to be disabled needing walking assistance within ten years of diagnosis. I’m at year nine and doing well. Going without is not an option, and I don’t think I should be expected to go without. Please also know that cost of care for me will be much higher if I’m in a wheelchair, can’t work and live with all of the associated health problems that come with disability.
- Find a new medication. I’ve tried two in the past that caused such misery they were not an option for me. Insurance companies want to treat all patients the same, and we’re just not. What works for one person doesn’t work for another. What helps one person causes severe side effects for another. We need to keep trying different medications each time one doesn’t work, and we hope we don't run out of options. One I tried for nine months before giving up. Another took six weeks before my body broke out in hives and I had to cease taking it. Each time I try a new medication, it takes months to get approved and use it before I’ll know if it’s going to work for me.
On February 28, 2018, I wrote a follow up post. Read Part 2 of my pharmaceutical medication denial and decision reversal Necessary Medications and Politics: Part 2
Have you sent a copy of this to Mike Kreidler, ournstate insurance commissioner? Youbhave been very careful not to name your insirance company...but will calling them out on social media be effective? How else can I help, you??
ReplyDeleteThank you for the suggestion, Kathleen. I hadn’t considered that. I’ll keep working through my insurance, my doctor and the medication manufacturer until I’ve exhausted my options or decided something else will be right for me now. I’ll definitely keep your suggestion in mind as I proceed.
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