Would You Fund My MS Treatment? (Part 2)

“… 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.