ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, October 18, 2011

YOYO (You're On Your Own)



For the recently diagnosed ALS patient, it's not quite as easy as it sounds. Here are some things that may help.

  1. Some neurologists aren't current on the status of clinical trials. Some neurologists discourage clinical trial participation lest the trial may do harm to the patient (like ALS isn't the ultimate harm). Some neurologists advise patients only of clinical trials in which they are investigators. Some neurologists advise patients only of clinical trials in which they are not investigators. Some physicians have the human "not invented here" frailty. Patients shouldn't stop with the neurologist. Ask questions and ask more questions and contact the Clinical Trials Expert (who is a physician sponsored by several ALS organizations and should be able to provide objective information) alstrials@partners.org or (877) 458-0631. That contact information isn't easy to find on any organization's website, yet it's probably one of the single most important resources for a patient who might qualify for a clinical trial. Go figure. Nothing is easy with ALS.
  2. Going to the ALS Association website isn't going to provide you with a current or comprehensive list of clinical trials. Try www.clinicaltrials.gov and search for "amyotrophic." There you will find the most current list of trials and their locations and current status. It's a more up-to-date database of trials than any other organization's website provides.
  3. Look at forums at www.patientslikeme.com (also includes patient data reported by patients in formal clinical trials and in diy treatments) and www.als.net and www.alsforums.com ... and realize that not everybody there is an expert (and it's always easy to fall into the trap of listening to what you want to hear)... but you may find some information that will help you make a more informed decision about a clinical trial.
  4. Time is of the essence. Many trials limit participation to those within 24 months of onset. Many patients have lost much of that eligibility window just trying to get a correct diagnosis.
ALS is unfortunately the ultimate YOYO disease. You're on your own to dig and find answers. Don't stop with one neurologist and one website.

p.s. To ALS organizations lurking here... Please try an experiment. Pretend you were just diagnosed with ALS and want to find out about clinical trials. Do it when you're exhausted and after you've whirled like a dervish for three minutes since that's the feeling that a lot of people with ALS and caregivers have all the time. Google. Look around at websites. Confused? Try to find the phone number or email address for the Clinical Trials Expert. Confused? Look at the CDC's website. Should you expect a phone call telling you that you are a candidate for a trial? Confused?

No comments:

Post a Comment