Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013 Sheryl Jedlinski

Why we still have no cure for PD

Picture2The most eye-opening factoid I took away from the 2013 World Parkinson Congress (WPC) is that almost one-third of all clinical trials fail to enroll enough participants to get off the ground. This leaves patients wondering which, if any of these trials, might have led to the cure for Parkinson’s disease. Researchers can come up with one highly promising idea after another, and even raise the necessary funds, but unless enough patients show up to participate, they can’t move off the starting block.

Recognizing the collaborative nature of clinical trials, the WPC brought together the various stakeholders (Movement Disorder Specialists, Study Coordinators, and people with Parkinson’s, etc.) to learn about each others’ roles in the clinical trial process, and to share their thoughts about, “Why we still have no cure for Parkinson’s, and what we can do about it.”

Discussions revealed that patients whose PD symptoms are well-controlled are understandably reluctant to join a clinical trial that would have them alter their treatment plan. What they don’t realize is that many trials don’t involve taking any additional medication. Participants are simply asked to complete family medical history surveys or commit to a specific exercise regimen.

The group also identified the following obstacles, besides “too few participants,” that may be slowing the search for the cure:

  • PD is a much more complicated condition than originally thought.
  • Greater centralization of data is needed to avoid duplication of research.
  • Big pharma perceives the drug revenue stream as potentially less lucrative than drugs for other diseases affecting more people.
  • Public funding challenges.

If we, as patients, want to see a cure for Parkinson’s disease in our lifetimes, we need to become more aware of and engaged in the clinical trial process. Until that happens, we are our own worst enemy.

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5 comments on “Why we still have no cure for PD

  1. You make some excellent points and I totally agree with patient centered and participatory medicine. We must not sit back and wait for the next person step forward. Why not help to lead the way to our cure!!

  2. Claudia Revilla
    October 6, 2013

    Absolutely, positively and definitely. We are the patients, if we want the cure we need to learn how to participate in clinical trials, and do it. There is no other way. The comfortable and somehow active life of many of us blinds us momentarily until the future arrives and we get really physically, emotionally, and economically challenged due to a disease that makes us forget that the storm is out there. With all my respect and consideration to my colleagues with more experience in PD, we have a challenge ahead of us, and at the same time if we are more informed, it is our duty to try to inform those who aren’t. Education is the first and most important step prior to action. Yes, trials are not easy or cheap or comfortable, our routine and comfort zone gets temporarily altered, but the future is still approaching. If we continue to ask and demand but are not willing to give and sacrifice we will never get there, if we continue to claim our myriad of rights even before participating and witnessing what it really is like, we will never get there. We have to step in, participate and forget, our good deed is done, but it was not for free, because if I don’t receive the payment of the cure right now, maybe my children or grandchildren will. Let’s just do it because we can, if we can put together money for a small vacation every year, plan ahead and find trials that can make the destination a different and more productive one. It is just a little idea and option, there are many more I am sure, but if we start arguing why can’t the sites sponsor my expenses, who is going to take care of my pet while I am gone, etc. our needs and realities need to be valued. The sites are already burdened with economical cuts and lack of volunteers, the pharma industry is challenged with the many more and actual meds to make a profit, now think and give me a good reason as to why do we really think that we are going to get all the benefits before participating? That’s why we don’t have the cure .

  3. 100wickedwords
    October 7, 2013

    Nice addition of graphics, too!

  4. defeatparkinsons
    October 7, 2013

    This article is great…and goes along with what I wrote about in my blog….PD research is the palm of our hands! Pass it on …become a research advocate and participant even if you don’t have the disease we NEED healthy controls too! :)

  5. defeatparkinsons
    October 7, 2013

    Great article! This goes along with what I wrote prior to WPC in my blog ….Parkinson’s research is in the palm of our hands…and is up to each and everyone of us to make the dreams and hopes of today become the reality and successes of tomorrow – finding better treatments for improved quality of life and a much awaited cure!

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This entry was posted on October 6, 2013 by in Politics of PD, WPC 2013 and tagged , , , , , .
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