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.

Wednesday, February 7, 2018

NOTICE - Stay On Job Till Whistle Blows


And the whistle isn't blowing soon!

We're in the midst of more Right to Try (RTT) controversy as the House version of the federal bill is under consideration.  There are valid concerns on both sides of the issue.  The perspective of those dealing with ALS, a quickly fatal disease with no effective treatment options, adds more fuel to the idea of giving people broader access to drugs which have passed safety trials but are still in efficacy trials.

A "yes" to RTT isn't perfect.

A "no" to RTT isn't perfect.

Some health advocacy organizations have taken stands against RTT.

Some health advocacy organizations won't touch it with a 10-foot pole.  Most ALS organizations fall into this category.

Some health advocacy organizations endorse RTT.

My concern today is that health advocacy organizations have taken one of the three positions, breathe a sigh of relief, and think that they are finished with this issue.  You are not.  Step up and get back to work!

If you think that RTT isn't the answer or if you are conveniently agnostic on the topic, get to work.  If you think RTT is the answer but are aware of its flaws, get to work.  There are dozens of things you all can and should do today to make experimental treatments more accessible to the patients you are supposed to be working for.
  • Get clinical current clinical research opportunities to your patients aggressively.  Can your employees even name the five closest enrolling clinical trials?  I didn't think so.  They should be talking about them constantly. 
  • Fight for broader access to clinical trials.  ALS researchers have said that the two-year window for eligibility is arbitrary and question whether it even makes a difference, but trial designs don't change.  Step up.  Demand trials that are more inclusive of people who have often wasted over a year from onset getting a diagnosis.  
  • Move quickly to eliminate the distance barriers that prevent people from being able to enroll in clinical trials.  There are large populations of people with ALS who are not within 100 miles of any enrolling interventional trial.  There are people in Iowa and Indiana who would love to have access to a try at a clinical trial. 
  • Stop letting clinical trials be cheap with clinical trial participants.  They should be kept whole for their investment in clinical research.  A billion dollars for a new drug and nobody can pay for an Uber/Lyft ride for someone to get to a trial appointment?  Can't anybody pop for a room at a Holiday Inn Express for a patient traveling to a site?  Cmon.

This stuff isn't that hard.  It will require effort. It will require aggressive advocacy on behalf of the people you are paid to help. You are not finished just because your board voted on your position (or non-position) on RTT.  Your patients have a Right to Better now.  You aren't anywhere nearly finished.  Get to work.  We'll let you know when the whistle blows.

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