Hundreds of people with ALS demonstrated at ALS Association headquarters last week after one researcher disclosed a scheme to profit from money raised in the “Ice Bucket Challenge”
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PALS gathered in Washington D.C. to
protest at FDA & ALSA headquarters.
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It was a warm Spring day at home in Connecticut, but Richard Gilpin couldn't get out in the garden to tend to his tomatoes. Since being diagnosed with an accelerated form of ALS nine months ago, he has completely lost the ability to walk, talk, or use his hands on his own.
“Our organic garden had expanded pretty dramatically over the last 13 years,” said Richard’s wife and caretaker, Lori Gilpin. “But now he has very limited mobility, and it’s not even possible to make our way into the yard.”
Though the couple knows that Richard’s chance of surviving more than a few years is vanishingly thin, they cannot help but hold out a small hope that some experimental treatment might slow the progression of his disease. However, like nearly 90% of people with ALS (PALS), Mr. Gilpin is not eligible to access any of the investigational therapies being studied in clinical trials.
Hundreds of patients and advocates protested in Washington D.C. last week, raising their voices to speak up for people like Richard who have been silenced by ALS.
A rogue group of PALS known as "No More Exuses!" staged massive demonstrations outside the FDA and the ALS Association (ALSA).
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Protest organizers Craig & Nancy Reagan
were critical of ALSA for failing to help
patients outside of clinical trials.
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"We're done being nice," shouted one protester, referencing a 2017 study which concluded that PALS are “usually nice persons” when compared to people with other fatal diseases. The phrase has become a sort of dark, inside joke amongst patients and caretakers, who believe the study's results explain why ALSA has gotten away with ignoring PALS who are struggling to access unapproved drugs.
ALSA is yet to spend nearly $100 million that was raised for research in 2014 during the Ice Bucket Challenge. And one of the few researchers that did receive ice bucket money is now under fire after admitting to a conflict of interest that he had previously failed to disclose to the public.
Last week, Dr. Joe Beckman and ALSA released an updated COI statement. Beckman still claims he received no financial support or stock in any company in exchange for conducting ALSA-funded research, but the researcher now says he is hopeful that he will personally profit from it in the future.
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Dr. Joe Beckman and ALSA have come
under fire for their newly-revealed COI.
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“I do hope to collaborate with [CMD] to carry our next drug into human trials because I believe in their approach,” admitted Beckman, a scientific advisor for CMD, a drug company opposed to providing unapproved therapies to PALS outside of clinical trials. "The reality is that if even one patient in a Right-to-Try treatment [sic] develops a severe side reaction, it could delay or even kill the opportunity to get this drug to ALS patients."
In response to the many online discussions about Beckman and ALSA's startling revelation, the mother of one patient posted a section of the new Right To Try law that forbids the FDA from punishing drug manufacturers for adverse reactions. Beckman appears to have mixed up the new law with the outdated, so-called "compassionate use" program.
ALSA did not respond to requests for comment on their COI policy for researchers. It is unclear whether the organization was aware of Beckman and CMD's scheme before they sent him ice bucket money or allowed him to publish erroneous statements on their website.
After a police officer arrived to monitor the protests on Thursday, ALSA invited some PALS inside to discuss the group's concerns, but refused to allow any members of the media to sit in on the meeting.
Protest organizers seemed pleased as they emerged outside to give an update to patients and advocates who were still demonstrating in the rain.
"We're glad that ALSA is now at least acknowledging Dr. Beckman's massive conflict of interest," said Mike Henson, a vocal ALS patient and spokesman for the protest group. “That is a victory in its own rite.”
“We’re not going to be issuing a statement about the meeting,” wrote Brian Frederick, Executive Vice President of Communications for ALSA. Frederick is one of seven executives on ALSA’s payroll, which costs $7 million per year.
Choking back tears at her home in Connecticut, Lori Glipin wondered out loud if ALSA will ever take action to help people like her husband.
"We just want our voices to be heard," she explained, while helping Richard scratch an itch on the side of his neck. "We want to try something that gives us a little bit of hope."