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.

Thursday, May 31, 2018

Here's The Deal

People with ALS hear that all the time.  Here's the deal.  Sign here.

Clinical trials have a deal.  Van purchases have a deal.  Homecare companies have a deal.  Power wheelchairs have a deal.  Pharmacies have a deal.  Hospitals have a deal.  The ramp for the front door has a deal.  The fundraiser even has a deal.

But it's never really a deal.  It's always THEIR deal.  They write the rules.  Their lawyers write the contracts. Take it or leave it.  A person with ALS has no leverage.  You sign.

The patient is at the center of everything they do except the deal.

Yesterday with the signing of Right to Try legislation in the US, we're entering the era of some important new deals.  Who is going to look out for people with ALS in these deals?

Who is going to make sure that dying people aren't handed more papers to sign that are a bad deal for them and others with ALS?

  • Who is actually going to make clinical trial deals better so that people who volunteer for clinical research aren't forced into a pay-to-play arrangement to continue an experimental therapy?  
  • Who is going to make sure that people who got stuck with placebo in a trial are at least given a free try of the therapy as part of the trial deal without having to resort to Right to Try access?
  • Who is going to keep Right to Try deals from imposing secrecy that will attempt to stifle patient rights to have and use and share their own data.
  • Who is going to make sure that Right to Try deals and monetary exchanges are transparent?
  • Who is going to stand up for the patients and make sure that they get some leverage in a deal and are not just handed somebody else's idea of a deal

Patients asserted the right to try.  They have a right to a say in the deal, too.

Code of Conduct anyone?  Now is the time.

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