ELLIE'S BLOG on Living Well with MS

Cures?..  Total relief from  MS Symptoms?..  Progression prevention? The answer is no to all of these. 

We with MS do get a shorter duration and decrease frequency of a relapse which is helpful.  And there does appear to be a decrease in the progression of the disease  and irreversible damage from these drugs. But the response is individual. Some people get more help from them than others. But when it comes to a cure these drugs are not it. It looks like the "cure " is a long way away.

So why are these Interferon's and other drugs so expensive if they're not curing us or keeping relapses and progression totally under control?  People with MS are taking these drugs every 1-3-7 days or every month for years and years. And the costs are increasing yearly on all the drugs.Whenever a new drug comes onto the market of course the price is higher.  But then all the others increase their prices too. It's like a cartel.

There is finally increased reporting in the National Media as well as Professional Journals and web sites regarding this issue.

If I mention to someone that my MS drug costs (especially my interferon) are awfully high. Their response sometimes is to question me why I don't take generics. When I explain to them there are no generics and tell them the cost of these drugs ($35-45,000 a year)some people don't believe me. They can't understand how a drug could cost so much if it wouldn't be a cure or at least prevent relapses or progression by taking them.

I myself started on the MS interferon drug Betaseron in the late 90's when it cost $10,000.a year.  It didn't cure me but it did decrease the length, severity and frequency of my relapses.  However gradually over a 10 year period it became less effective and I was progressing.  I happened to change neurologist's at this time and was switched to a different MS interferon drug Rebif .

This again slowed down my progression, decreased the frequency and severity of my relapses and I was able to gain back some the functional ability that I had lost.  So to me these drugs are a miracle!!  They do give me and my family a better life. A life which I do not want to lose. However, when I stop to think of the cost of these drugs I am beginning to question how cost effective are they for what they are giving me.

By the time I had reached the age of 60 I found working even part time  with MS very difficult.  So I stopped and went on Social Security Disability. Then two years later I was in Medicare.  I read in one of the MS magazines that Betaseron was offering people who did not have prescription drug coverage like those on Medicare financial help. The cost of the Drug Betaseron was then $1200 a month with the last two months free.  This was wonderful and as I was also taking some other expensive drugs it helped immensely.  Then when I turned 65 I received a phone call from the Betaseron Financial Assistance program. I was told they could no longer cover me because I was now available to receive NY State EPIC program for Seniors. And from my financial statements they felt I would fit into the EPIC program.

I did apply and from then on until January 1 of this year I received  total coverage of all of my drugs at an extremely reasonable co-payment price. This was offered along with either a quarterly fee or a deductible dependent on your income.  And as drug costs were skyrocketing and my need for prescription drugs increased as I also became a diabetic I would thank God for Epic in my prayers at night. 

There was a lot of talk when Medicare D was passed that Epic would not be able to be used with Medicare D.  This was a quandary but Epic continued to cover us until it  was determined that all State's Prescription Drug programs for seniors would be able to wrap around the Medicare D program.  And when I joined Medicare D my costs went down slightly. But Epic's cost for my drugs would have gone down dramatically.

As cuts were occurring in States across the country due to the recession I did wonder if we might have to pay a larger co-pay or fee . But Epic kept saying we will always be here for you. However this year Governor Cuomo's budget dropped a bomb by essentially gutting Epic. They are now only offering help in the doughnut hole not a wraparound. The first prescription drug I filled this year was Rebif. I was immediately in the donut hole.

All the articles I read reported that seniors would only have to pay $1000 more a year for their drugs.  They certainly weren't talking about people with expensive drugs like MS or Cancer.  My drugs will now cost me over $5,000.00 a year.  And most likely  more because the prices keep going up. The AARP Bulletin had a long and thorough article on this in their Dec. 2011 Bulletin . aarp.org/bulletin .  They stated they plan to address this and try roll back the cuts when the NY state legislature reconvenes in January . Meanwhile they suggested people check out NeedyMeds.org  or the assistance programs of pharmaceutical companies or charities.

My research on alternative ways to lower my drug costs is bringing up more questions than answers. This could become a full time job for a person with 2 chronic diseases and who take many drugs. You have to look for help for each drug on different sites as requirements for eligibility are all different and having Medicare D doesn't help. For me my MS interferon drug  Rebif is foremost as it is the most expensive.  If it was just my Diabetes drugs that would be manageable. But it's the MS drugs that just bust the budget .

There is research going on now where they are using 2 drugs together to increase effectiveness. And they are speculating that a cost of $100,000 might be too high for most patients with MS.  You think so...Really!!

In my research for checking my Medicare D plan I also researched what could be done about the outrageous costs. I knew most European Countries and Canada pay much much less for these drugs. And I had heard that the VA costs and retired federal workers too pay less for these drugs. So why are the disabled, seniors and disabled seniors on Medicare paying so much?   If is competition that bring down prices it's not working . The prices in the private sector are all going up!  And as they are manufactured for all countries the same why are we paying so much more than everyone else?

I've read many articles about this. But the article that seem to cover all my questions was a recent article by  Tom Valeo in the American Academy of Neurology Medical Journal.

A recently published study by the ANN concluded that the cost of the MS drugs in the U.S. lowers their cost effectiveness scores significantly.  They were not saying they were not effective or that they shouldn't be used by people who need them . But it's the costs of these drugs that are the problem.  They did a study of 910 patients for 10 years and determined cost effectiveness using a complex formula . They found that lowering the price of drugs to the levels in other countries would improve cost effectiveness markedly here in the United States.

Dr. Corboy of the University of Colorado School of Medicine and a Fellow of the ANN reported that the cost of these drugs have almost doubled since 2008. (I look back to 1998 where it's a 3-4 times increase).   Dr. Corboy feels one of the reasons for the high cost of medications is the fact that Medicare is prohibited from negotiating prices with the drug companies as other nations do.

But here in the United States  the Veterans Administration, the Department of Defense, the Public Health Service, and the Coast Guard may negotiate. And they do receive dramatic discounts. "For them glatiramer acetate and the interferon's cost about $14,000 as opposed to $41,000 per year" Dr. Corboy says.  And he goes on to state that the costs are even lower in Canada and in Europe. And even if you do qualify for financial assistance the cost to you can still be too high for you to be  able to afford the drug. The last remark in the article by Dr. Corboy sums up my feeling exactly.

" It's like reverse capitalism.  In other businesses, when competition goes up, prices usually go down but it's the opposite with drugs." -_JOHN CORBOY.M.D. To read the informative article that much of my information came from go to:

<http://patients.aan.com/resources/neurologynow/? event=home.showArticle&id=ovid.com:/bib/ovftdb/01222928-201107060-00005

This is a problem that needs fixing.  Up until 15 yrs. ago there was no specific drug to slow down relapses and progression in MS. Then we had Betaseron, followed by Copaxone, Avonex, Rebif and Tysurbi and now Gylenia. This is so promising. And there are many more drugs in the pipeline. But will their costs prevent many of us to be able to take them and live better productive lives? With all my heart I hope not!

Well it's time to take my expensive interferon injection:

It's too expensive but I don't want to give up what it does for me!

Have a good 2012 everyone.

ellie