Necessary Medication and Politics: The Devastation Falls on Patients

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:

1. 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.
2. 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. 
3. 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.

I’ll work on finding a new medication.  I’m frustrated and not looking forward to this.  Yet, here I am.  I work, I have good insurance, and I live in a prosperous country.  I should be in a good position on this, and I get that I have it better than a lot of people on earth.  But don’t overestimate our good fortune in the US.  Other countries have figured this out better than we have.  Let’s learn from them. Enough said.

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

You’re Not Doing it Wrong

Online headlines and articles give a pervasive message – You’re doing it wrong.  Whatever the topic, they’ll say you’re missing something, you’re doing it wrong, or you’re just clueless.

The judgement and arrogance is exhausting and irritating.

Please, please, PLEASE tell me things that will help me live a better life.  Encourage me, reinforce me, and motivate me. But please don’t put everyone down while assuming NO ONE has already figured out what you just figured out and are preaching.

There are times I’ll read an article that claims it has the absolute answer, and I’ll think they are five years to a decade behind the times on the latest research. 

They’ll say since you’re not doing it the best possible way that you’re doing it wrong.  Nope.  I disagree.  I also question whether their opinion of what is best is going to withstand the test of time and scrutiny.  It may be completely debunked in a few years.

They’ll assume that if you have a problem with something then you’re not doing what works for them.  Often, I’ll look through guidance and I’m already doing all of the recommendations like a pro.  Doing more might actually harm my health.

Doing some of something healthy is generally going to be better than not doing it at all, and I think the articles that discourage anything less than perfection do us all a disservice.  It’s all relative to where you are now. Online articles have no idea how much I’m already doing, and telling me what to change isn’t going to help.

Good rule of thumb – if someone tells you what you need to do before asking any questions, they don’t know.  Keep learning, dealing with problems and becoming who you want to be, but don’t let an uninformed internet oracle decide what’s right for you. 

I experienced this lesson in a glaring way when I moved.  I had health habits and routines in place that I’d put a lot of thought into and worked perfectly for me.  I moved to another place, and so many of these things no longer worked for me at all.  If something that worked for me in one moment stops working for me when one change is made, then I have no business assuming something that works for me will automatically work for someone else.

We need to know our own bodies, lifestyles and our tendencies given health conditions and vulnerabilities. We can get inspiration, motivation and helpful tips from each other, but in the end it’s trial and error to see what will be useful to each of us.  There’s no one right way to maintain health and no universal prescription for all humans. If you’re doing it differently and tailoring things to your body, you’re not doing it wrong. 

I Need To Up My Game: Prioritizing Needs

When I feel great, there’s no need to change what I’m doing.  Following new and improved advice may actually break the complex formula of nutrition, fitness, and lifestyle that keep me in good health. If I’m not feeling well, figuring out what I need and prioritizing it within the mix of all my other needs becomes an issue. 

We subconsciously prioritize and adjust our behavior to meet our needs all the time.  For me the demand to put effort into prioritizing needs comes when I don’t feel well.  I’m stressed, something hurts, or some part of me isn’t working as well as usual.  It could be one small thing that is snowballing into a big issue, or it could be a big issue that’s easy to identify yet overwhelming to fix.

This past year, my pain level increased to a level that was affecting sleep and causing debilitating discomfort.  I researched possible causes and tried stretching, massage, supplements and rest. It helped a little but not much.  I went to a massage therapist who worked the muscles, and it caused almost unbearable pain for days. Through my neurologist, I tried medication and was told I’d need to take it for a few weeks for the side effects to mellow out.  I gave it a good try, but I could see it wasn’t going to be a good long-term solution for me right now.  I obtained a referral for physical therapy, and there I had someone work with me to specifically design a fitness regimen that will address my nerve pain. She assessed my personal condition and through trial and error pinpointed the cause of the pain.  She helped me devise a mix of exercises that will increase my strength, improve my balance, and hopefully reduce the nerve pain I’m living with.

Each step of the way, I had to make my health a priority while still doing everything else my life requires.  While under her care, I dutifully did all the exercises she prescribed.  It was tough doing it all, and it wasn’t something that I could sustain.

When I think about doing everything the physical therapist advised, I get overwhelmed. I want to do it all, but it’s too much right now.  I anticipated this and specifically asked her what the minimum daily fitness activities would be so that I could start there.  This took being honest with myself and with her.  I had to be open to being judged negatively and accept I’m not going to be the model patient I’d love to be. 

I already have a minimum fitness routine I do every day and have been doing for years.  Seriously, I missed eight days two years ago and none last year.  I thought I was doing great, but it wasn’t enough to protect me from having problems develop.  So now I’m working on modifying my routine to deal with my changing body. I’m incorporating the minimum she gave me, and I have a long list of things to add when I’m ready.

I’m not doing everything she gave me, but I’ll get there.  And I like having the guidance for what to do when I’m ready to up my game. She may or may not approve of my approach, but I’m the one who knows me and lives with the consequences. 

It feels like slow change, but it’s not no change.  I’m in it for the long haul and doing what I can as I can.