SAN DIEGO (CBS 8) – The popular Ice Bucket Challenge raised awareness and more than $100 million for ALS research. Now patients are issuing another challenge: get a promising new drug on the market – now.
From Ironman triathlons to the Boston Marathon, Dr. David Huntley challenged his body well into his 60s. But just two years removed from his last half marathon, Huntley no longer has use of his legs, limited hand movement, almost no ability to swallow and a loss of speech.
"ALS just steals lives from people," wife Linda Clark said.
His wife Linda knows his days are numbered, but there is hope. A drug known as GM6 has shown promise in phase 2 trials. As Huntley understands the drug, it appears to protect and perhaps repair the nerve cells under attack by ALS.
"Right now, it is our only hope. It is the only drug in 20 years to come along and show benefits to slowing the progression of ALS. We need it now," Linda said.
That's the problem. The drug's maker Genervon still needs to do more testing to get FDA approval. Testing that's sure to take at least three years.
"When you've got four months to live, or a year or two to live, you need the drug now because it's absolutely proven to be effective in 7 out of 8 patients," Clark said.
So the Ocean Beach couple is joining a national push to convince the FDA to grant accelerated approval for GM6. They're asking everyone to sign an online petition -- fast -- because next month Genervon is meeting with the FDA to try and get into its Accelerated Approval Program. If they're successful, all ALS patients would immediately have legal access to the drug.
Remember those Ice Bucket Challenges last summer? The ALS Association took in $115 million, most of it earmarked for research. But so far, the ALS Association is taking a very cautious position on GM6.
"Believe me, no one wants it more to be cured than our ALS Association, but there is a protocol and a process for this to happen. The cooperation continues and we're hopeful," San Diego ALS Association Executive Director Steve Becvar said.
Becvar says Ice Bucket money is already going to other local research, along with supplies including wheelchairs ramps and transportation for local ALS patients. But as of right now the association is not promoting accelerated FDA approval, or the petition.
"It is morally unconscionable to me that we would withhold a drug that has the potential to extend their lives, improve quality of their lives and potentially lead to a cure," Clark said.
CLICK HERE>> for the petition.