Living Well with MS: In Need of Medication

We all know that medication is EXPENSIVE!!  It almost doesn’t matter what the medication is, the price tag is more than any of us ever want to pay.  Commercial insurance companies are in a position to help negotiate better prices for their subscribers, but sometimes it seems like they should weld greater power to do so more effectively.

When new medications for MS hit the news and the prices are announced, the first wave of response throughout the MS community is excitement for gaining access to a new treatment option  The second wave is indignation regarding the cost, even when the drug company establishes a Patient Assistance Program (PAP).

There are different types of PAPs including copay assistance programs for insured patients and free or lower cost drugs for needy and uninsured patients.  Programs to help patients insured through government programs, such as Medicare, are trickier to navigate and sometimes are not available at all.

When I was first diagnosed with MS in 2005, my doctor prescribed an injectable medication.  This is when I discovered that my insurance had an annual coverage limit which didn’t come close to paying for the medication.  I was referred to a program which  initially denied me full financial assistance and I had to cover 6 months of medication at my own cost, only 6 months after my diagnosis.

That first year with MS was extraordinarily stressful on many fronts.  Money and medication issues was just one of them.  I applied for so many programs and received multiple rejections that I became so angry that I wanted to throw objects at my TV anytime I heard a drug commercial end with - “If you are unable to afford your medications, Drug Company X may be able to help.”  I was getting very little help.

But not all PAPs are run the same.  I have had a much different experience for a medication I have been using since 2009.  The stress related to affording medications has been greatly decreased.  I still have to budget my limited $1500/year drug coverage, but at least now I have a chance to get what I need.

In addition to traditional drug assistance programs, I want to share with you another option which may be available.  Here’s another part of my story.

In the 3rd month of paying full price for my self-injectable medication, I visited the neurology center and talked to my MS nurse about the situation.  She did something extraordinary.  She went to another part of the office and brought back a large, brown grocery bag with something in it.  I peeked inside to find three boxes of my medication with the prescription labels blacked out.  I wanted to cry.

Turns out that another patient was unable to use this medication and had an extra supply when she switched to something else.  She gave the unused/unopened medication to the MS nurse who saved it for just such a situation as mine.   Turns out that several patients have temporary needs for just enough medication to carry them over when their insurance coverage changes, or when they are waiting for approval for financial assistance.

I learned that it is legal for a doctors office to accept and redistribute unused/unopened medications.  Please know that it is very much ILLEGAL for patients to do so amongst themselves.  Admittedly, not all doctors or medical offices are in a position, or willing, to do what my MS nurse did for me.  When I switched medications four years later and had a couple of extra boxes in my fridge, I took them to the my MS nurse who assured me that they would become very useful.

When you are in need and struggling for financial assistance, it can seem like there is no hope.  Be open with your doctors/nurses and let them know when problems arise.  They may have experience with another patient and have discovered a solution to meet the problem.  Thinking outside the box is a valuable tool in any situation.

Stay strong and never give up.  If you are rejected, appeal.  Again and again, if necessary.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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