ELLIE'S BLOG on Living Well with MS

And how did I get to walking like this at an event  from being wheelchair dependent  3 years  ago.

 How?  Through science and technology and the development of new drugs

Scientific and Technological Research over the past decades have produced so much more information about MS and this has allowed new drugs to be developed. And even with no cure yet..we are being helped !!!

The first big breakthrough in Science was the understanding of the immune system. Dr.Weiner in his book," CURING MS ?HOW SCIENCE IS SOLVING THE MYSTERIES OF MULTIPLE SCLEROSIS " discusses how when he first started a study into MS in 1972 the knowledge of the immune system was at a very elementary level. However it and the study of virology was becoming a fascinating basic science. As a result vast progress in understanding the immune system has occurred.  In fact 7 Nobel prizes have been received over the past 25 years for research into our immune system.

The second important event was in Technology. The development of the MRI machine to image the brain. Here for the first time physicians/scientists could study the results of their research with an actual multilayered image of their subject matter. And of course people with MS could be diagnosed much earlier. But at that time there was no effective drugs to slow down relapses or disability due to MS. I remember when the first MRI came to our area at Albany Med. Everyone was excited as among other conditions it could give an early diagnosis of MS.  Yet as some people felt at the time if there was no effective treatment it was certainly a mixed blessing.

But then came the 3rd event. This was the development of  recombinant DNA techniques  this allowed scientists to genetically engineer proteins.  This led to the first drugs for MS- the genetically engineered Interferon's  (Betaseron, Avonex and Rebif) . And the development of these drugs were done with private money through the drug companies.

The first was Betaseron which was developed by the drug company Biogen. Betaseron showed through its 3 Phases of drug trials that it was safe and effective. And as it was classified as a biological orphan drug it could be a profit maker. This was necessary for the company to take on this drug as being a public company on the stock market they are required to make maximum profit for the shareholders. And since that time Avonex and Rebif which are also interferons were added to the list of MS drugs.

And other drugs that are not interferons have also been put on the market. Copaxone was one of the first and more recently Tyserbi . And now we have our first oral drug Cladribine on the market with others in the pipeline .  Also exciting is the new drug Amprya which helps the electrical charge go over damaged myelin sheaths covering the nerves. When I started Ampyra I got back my walking ability in the afternoon and increased my distance and speed.

In fact there are now 700 studies In North America  listed with the NIH (National Institute of Health).                         

For more details on locations go to :http://clinicaltrials.gov/ct2/results/map/click?map.x=165&map.y=171&term=Multiple+Sclerosis  

  Some of these studies will successfully produce new drugs that will help people with Multiple Sclerosis some will not and this is why new drugs can be so expensive .  Producing a new drug is costly and as the drug trials are done by Private- publically traded drug companies they put money up front into the research and making of the drugs. But they have to be certain they will make a good profit later.

Unfortunately as the costs are so high people who would benefit from them can be left without them. Particularly now in a time of recession and financial crunch .  People who are losing their jobs who had health Insurance with their jobs have lost their health Insurance. Those still employed are finding that their employer is  demanding they pay more of the cost of their health Insurance. People working for the Federal or State government who are still unionized are finding that they are also being asked to pay more for health Insurance.

And last night a local radio station WAMC reported that Epic our state's program for prescription drug assistance for  moderate to low income senior citizens is now going to be put through a major dismantling. Our new Governor Cuomo is the son of the past Governor Cuomo that put this wonderful program in place back in the 1980's. If this goes through there will be many senior citizens who will be back again to not being able to take their prescription drugs. Yes, we have Medicare D for seniors but from personal experience you have to fight to get MS meds. And in the past Epic has been wonderful by supplying the drugs while they fought with the drug company's to get them to provide coverage. I think they have a little more clout than each of us individually have. And these drugs are really expensive so co-pays are large.And there are no generics yet!

The use of appropriate drugs can make a tremendous difference in a person being able to be more productive and not being hospitalized or placed in a nursing home(which would cost more) thru having better health. And for those of us with MS the decreased amount and length of time in exacerbations and the slowing of disability cannot be underestimated in significance. ....But the yearly cost of these drugs have gone up tremendously just like other healthcare cost for example the chart below was in the Winter 2010 issue of MSQR 

Why such big jumps? I think that's a question that should be explored.

I understand with health care costs sky-rocketing everywhere costs by the provider will be passed on to the patient. But in the case of Epic just to dismantle a program?  And are these profits we see pharma and the other health care plans and some providers making while many people can't afford their drugs or health care right?  Why are our costs higher than in other countries ?

I think we should do some soul searching and seriously answer these questions before we throw patients off the health care bus.  Are we no longer a society of equal opportunity for all ?

                                                                                                                                           ellie