What ALS Can Learn from the Cancer Experience: The American Public Can be a Powerful Change Agent

“You must be the change you wish to see in the world.” - Mahatma Gandhi  

The Cancer Experience teaches us that the American Public can be a powerful change agent.  Recall, Dr. Slayman from the UCLA Medical Center who became a powerful change agent when he convinced Genentech (San Francisco, CA, USA) to fill out a clinical trial application for the cancer therapy, Herceptin (see post: What ALS Can Learn from the Cancer Experience: Identify and Support Champions and Change Agents)?  Well the story doesn’t end there.   

Before Genentech could start Phase 2 clinical trials, its Phase 1 success was highly publicized in the media.  Soon, Genentech phone lines and mailboxes were inundated with calls and letters from women wanting the drug under Expanded Access.  The company flat out refused.  They wanted to focus efforts on enrolling people for the clinical trials and were nervous that widespread access would halt the clinical trial process.

A young gynecologist by the name of Marti Nelson had recurrent breast cancer and wanted to participate in the Herceptin clinical trials, but was repeatedly denied.  In response to her death in 1994, thousands of activists stormed Genentech.  They decided to hold a funeral procession for Marti Nelson right in front of Genentech headquarters.  They chained themselves to the doors, and pounded on the doors for Expanded Access.  All in plain view of the media.             

Pressure built and in 1995, Genentech arranged talks with the breast cancer advocates.  The company decided to provide Herceptin to small numbers of women outside of clinical trial on a basis of a Drug Lottery.  A true success story for cancer advocates. 

The Ice Bucket Challenge, Steve Gleason Act of 2015, and policy change advocates who will be in Washington D.C. this May is an astounding testament to the power of the ALS Community.  Now is the time to think BIG, and demand policy form that will result in treatment options for those suffering with ALS who do not qualify to participate in clinical trials.  Thanks to the HIV and Cancer Movements, the U.S. FDA already has programs in place to fast-track and offer treatments outside of clinical trial.  The U.S. FDA approves nearly all applications for Expanded Access.  Now’s the time to advocate for the Marti Nelsons of the ALS Community.  Demand that your policy makers remove barriers and provide incentives to the companies to offer Group and Widespread Expanded Access Programs for promising experimental drugs, therapies, and devices.