Would You Fund My MS Treatment? (Part 2)

Would You Fund My MS Treatment? (Part 2)

MS_Wire_Ed_Tobias

“… in 3 years we went from living decent not rich to poverty and will prob have no utilities soon and maybe homeless.”

An MS patient wrote that after I posted Part I of this column a few days ago. “I went threw (sic) all of our savings cashed in my profit sharing and stocks sold my wedding ring and anything else I could of value,” she continued, “and we are still in severe debt and cannot find one person to help!!!!”

This just should not be happening!  In my earlier column I wrote about do-it-yourself donation websites, such as “Go Fund Me.”  But there are also organizations, worldwide, that help patients shoulder the cost of their drugs and treatments. Even the drug companies try to help out, when the law allows.

Help from drug companies

In the U.S., many drug manufacturers have programs to provide their high-costing MS drugs to patients at a deep discount or, in some cases, for free. The National Multiple Sclerosis Society has an excellent, drug by drug, list of these programs on its website. I recommend checking it as a first stop in your quest for help.

But the rules regulating this practice in the U.S. don’t make a lot of sense from a patient’s viewpoint.  Here’s how they work. If you have prescription drug insurance, either through your employer or as an individual, a drug company is allowed to reduce what you pay for their drug.  When I was still working full-time, I was prescribed the drug Ampyra.  According to a CBS News report, in 2010 the average wholesale price for a 90-day supply of Ampyra was about $3,000, or $1,000 a month.  My insurance covered about 50% of that, so I was left with an unaffordable co-pay of about $500 a month for a drug that was really helping me walk.  Fortunately, I was able to take advantage of Acorda’s patient assistance program to limit my co-pay to no more than $40 a month, and I was able to continue on that drug.

Then I retired and moved from my employer’s drug insurance plan to Medicare Part D (the section of Medicare that pays for prescription drugs).  And here’s the crazy thing.  Under the Medicare rules, drug companies aren’t allowed to pay-down the co-pay, as they do with private insurance.  They must either provide the drug totally free of charge to a patient, and the patient’s income must be low enough to qualify for that assistance, or they can’t provide any assistance at all.  My retirement income was too high to get the drug for free, and I couldn’t afford moving from a $40 co-pay back to $500 a month, so I had to go off the drug.

But, there’s another way …

Help from foundations

A foundation is the good place to turn when you have insurance, but it’s not enough to cover the full cost of your treatment and the drug company is unable to help. It takes patience and good timing to obtain help from these non-profits, but it’s worth the effort. If you qualify for the help (there’s still an income ceiling but it’s usually fairly high), a foundation will issue you a monetary grant. The foundation will use the amount of that grant to cover your co-pays directly with the pharmacy that’s providing your drugs, until your grant is used up.

At one time I was receiving a grant of $6,000 a year from a foundation, and it covered all of my co-pays for Aubagio for a year … a significant out-of-pocket savings.  Some of these foundations limit their grants to people on Medicare, while others also include patients with private insurance.  A list of some foundations that will pay for MS drugs can be found at the bottom of the National MS Society webpage that I mentioned earlier.

You’ll need patience and good timing to travel this route.  The foundations help patients with many different diseases and they can quickly run out of money for many of the diseases they cover until new donations are received.  The problem is, the foundations don’t announce when their coffers are replenished.  So, you need to check their websites, or call them, as frequently as possible to see if they have new money, and then apply quickly when they do.

When I received my grant, I got a tip from a drug company nurse that money for MS had just begin flowing again at one foundation.  I immediately called and was put on call-waiting.  I was ready to wait as long as it took to speak with someone, but the call-waiting announcement told me that my call would be disconnected if it wasn’t answered within 30 minutes.  If that happened I’d need to hang-up and call again.  Really??  With just five minutes to spare a representative answered and I was able to apply for my grant.  Whew!

Share what you know

I’ve written to the woman with whose quote I began this column, offering some suggestions. What’s your experience with the cost of your MS drugs?  Do you have any hints to share?  Please let us know.

[You can read other columns I’ve written on my personal blog: www.themswire.com]

 

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

 

 

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13 comments

    • Ed says:

      Hi Sharon. I have MS. I discovered this trick on my own and then coincidentally a few days later there was research to back it up. Barbells. I do 20 lifts 20 times a day or 40 lifts 10 times per day. I worked up to 11 kilograms in each hand but started much lower in terms of kilos. It is very useful to record the lifts each time because one has a tendency to forget. It gets easier and easier and I am about to increase the weight of the load. It is really energising and gets the blood pumping to my head. It really works and is a regular part of my day. I highly recommend it and there is research showing short bursts of intense activity benefits MS sufferers. I can’t exercise with my legs so I use my upper body. Stronger arms really help your mobility if your legs aren’t so good. Also if you can afford 5 or 10 dollars a day Ampyra (US) and Fampyra (Australia) are the same medication and really help one’s walking. I only use it on days I need to walk because it adds up of course in terms of money.

  1. Bob says:

    Sharon,
    I had the same problem needing (not wanting) to nap every day from 1 pm to 4pm. I then would get up eat and go to bed again at 8 pm. I did this for a whole summer. I decided that I was not living life anymore. I asked my doctor what to do and we decided to try Aderall XR. This is an extended release stimulant and I have returned to a normal schedule. Aderall is used a lot with children with attention deficit but also for other things. The extended release is important because it does not give you energy and then crash. You need to check the formulary on your insurance and of course work with your doctor. It gave my life back to me.

  2. Funny, I wish I had these article when I started this nightmare. MS has taken so much, jobs, money, mobility, etc. I recently was diagnosed with CLL as well. Make sure you take Medicare Part B. I am able to get a treatment for MS that was a derivative of Campath (a Leukemia infusion for MS, Lemtrada.) The issue is, i did not need part B for my current MS treatment (Tecfidera,) but as the infusion is coded as ‘outpatient, Medicare B,’ private insurance ‘estimates,’ its liability. The short is, I have been waiting months for the treatment. Warn other MS patients who are in a similar situation.

    • Ed Tobias says:

      David,

      Thanks for your comment. I moved from Aubagio to Lemtrada. Since Aubagio is an oral medication it falls under Medicare D and that means a large co-pay. Lemtrada, is an infusion and as you say, it falls under Medicare B. I had no problem getting it approved by Medicare or by my Medigap insurance, so the cost of this treatment has been covered in full for me.

      Ed

  3. Liesbeth Ritzen says:

    Hello,Iam 54 years old and have ms for 23 year now. My problems are walking and I have bladder difficulties.
    Do You now a treatment with Biotin, this is for secundair progressive ms they say.In the Netherlands it isn’t available.

    • Ed Tobias says:

      Hello Liesbeth,

      There have been several articles about Biotin on this web site and they may have information that can help you. Just search or “biotin” and you should be able to find them.

      Ed

  4. Jeannie Lansman says:

    Hi! My son is 41 and has PPMS. He is on SSI and Medicaid. His Rebif has been covered AT NO COST TO HIM through Briovia…a specialty Drug Pharmacy. Can’t wait for tomorrow when I can call them and see if they have Ocrevus and can what coPays would be.

  5. I have been diagnosed with MS & my biggest problem is incontinence. I have to go constantly, day & night & am lucky that my Disability Insurance covers Incontinent Supplies but I have had embarrassing accidents. My Urologist has tried two different bladder medication but they didn’t help,so he suggested Botox but my Disability Insurance doesn’t cover it. Where can I get help with the cost as I need to stop being embarrassed as I am slipping back into Depression?

  6. Sandra Kelly says:

    I’ve been on Aubagio for almost 3 months. I feel it’s been a wonderful benefit.
    I can now stand on my own, can walk a little with the aid of a Walking Stick, I’m a stronger person and can concentrate much more.
    I was on Beta Feron for 10 years and finally gave up the injections because they weren’t helping. For a while I was on Fampyra and it certainly helped. After using this for a year I gave it up because it wasn’t helping any more.
    This was done according to my Neurologist who decided to wait for the new drug, Aubagio.
    I know everyone is different and what works for one will not work for the other!

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