Clinical Trials and the Future of Multiple Sclerosis
One of the first things I remember after receiving my MS diagnosis was my loving and concerned father asking me to promise I’d never take part in a clinical trial. The very notion of a clinical trial scared the hell out of me so it wasn’t difficult to make that promise.
That was almost 30 years ago and so far I’ve kept my promise. The reason why is not what you think. Of course I want to honor my promise, but that’s easy for me because I’m doing well on Copaxone, the injectable I’ve been using for almost 20 years.
In recent months I began learning more about the importance of clinical trials. They are a key research tool to advancing patient care and furthering medical knowledge. Positive outcomes of clinical trials can help healthcare decision-makers direct more resources to what works best for the patient.
Some people in the MS community harbor deep concerns about taking part in clinical trials. They raise valid questions about their purpose, side effects, pricing, repair, and politics and they question the lack of funding for stem cell therapy.
I recently asked the MS Facebook group I’m a part of about their thoughts on clinical trials. I thought I’d share a few here. I think you’ll agree their thoughts echo our own:
- Make the price of drugs more affordable.
- Taking care of patients before profits.
- Create a wider scope for qualifying for trials.
- Add more locations.
- Place more emphasis on secondary MS.
- Provide more education for neurologists. I have been to far too many that aren't up to date on the newest treatments. I've been to a couple that didn't even know what Copaxone or Rebif were.
- Consider quality of life and side effects.
- Focus on repairing myelin instead of a 30% chance of stopping relapses. Focus on a cause and a cure!!
- I'd like to understand why MS drugs are allowed to have so many side effects. What good is a drug that can help or even cure if it can also make us incredibly ill or lead to death?
- Of course the cost of the medication is of great concern to all of us. However, I would like for them to be more informed on treating MS and not just supply a medication that causes side effects that often require more medications.
- 1) Stem cells. I feel that's where our cure may be or in that direction. 2) Why is it not approved by the FDA. 3) Why are there so few clinical trials with stem cells?
- There are currently NO MS drugs available that have been shown to reduce frequency of relapses or rate of progression more than making dietary and lifestyle changes. None. Why don't they study the benefits on the body that these changes bring and develop something that ACTUALLY HELPS!
- Please consider something for fatigue and nerve pain that keeps working with minimal or no side effects.
- I'd also like to know why our hard earned donations aren't being used to study any & all-possible benefits. Which would include dietary changes, supplements & exercises!
It’s my belief that education is the key to a better understanding about clinical trials. It is also the key to learning about what’s new in the world of research. So here are a few informative websites to get us all started:
ClinicalTrials.gov: This is a registry of publicly and privately conducted clinical trials in all 50 states and 190 counties. It also provides relevant history, policies and laws. Take a look to see if there are any clinical trials you might be interested in.
International Progressive MS Alliance: I had the good fortune of meeting the dynamic Dr. Alan Thompson, a member of the Scientific Steering Committee at the Alliance, (and Chair University College London Faculty of Brain Sciences, UK) at the recent Consortium of Multiple Sclerosis Centers Annual Meeting. Dr. Thompson spoke passionately about the Alliance’s mission to end progressive MS. Check their website to learn more about them and their research projects.
The Tisch MS Research Center of New York: This nonprofit independent research laboratory is making tremendous strides with stem cell therapy. Their Neural Cell Regeneration and Repair study uses a patient’s own adult stem cells to “regenerate and repair nerve cells and help patients recover lost functions.” Learn more about the work of Dr. Saud Sadiq and his team at the Tisch Center.
Wheelchair Kamikaze, a/k/a Marc Stecker: Marc is a powerful voice in the MS community. His work can be seen here on MultipleSclerosis.net as well as his popular blog, Wheelchair Kamikaze. Marc’s recent blog post “Video: Promising FDA Approved Stem Cell Trial, Repeatedly Rejected for Funding by NMSS, Featured in TV News Segment” is an important piece for readers. It includes a recent FOX News story about stem cell therapy, along with an interview with Dr. Sadiq and the story about one young woman’s life that was dramatically changed by SCT.
This is a good start to educating ourselves about clinical trials and what’s on the horizon in MS research. It’s important to remain well informed about the MS landscape. There may be something that is, or will be, available to us to help us live a better quality of life with MS.
Stay informed, use your voice and remain hopeful.
Let’s all hope for a better tomorrow for all of us.
END NOTE: Here is Dr. Daniel Kantor (on behalf of MSWorld), talking with Dr. Clyde Markowitz, Assistant Professor of Neurology and Director of the MS Center of the University of Pennsylvania, about what the future holds for MS.
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