Veteran Black press columnist Jim Clingman has been diagnosed with ALS. (Photo by Kiah Clingman)
(Part I of a II-Part series)
‘But, I never had anything lingering or wrong with me physically. I’ve always been pretty active, even up to a couple of years ago…So, this was like devastating, you know.”
Now, 18 months since the diagnosis, Clingman is beginning to feel the effects in his upper limbs.
“I can feel a little something in my fingers and arms feeling weaker than normal. As I sit here and write, I sometimes miss the keys, making more mistakes.”
And then there’s the mind-numbing prognosis. Typically, ALS patients live between two and five years after diagnosls, according to the National Institute of Health.
But Jim Clingman – and his family – are anything but typical. Alongside his wife, Sylvia, a neonatal intensive care nurse, and his daughter, Kiah, a graduating senior at the Howard University School of Communications, this family is standing on their spiritual faith in God while doing all they can in the natural to fight.
“It’s a day-to-day thing. I have to put it like that. I try to look at the positives like the fact that it started in my foot instead of in my face. It can start in arms, hands, etc. The doctor told me, ‘If there’s anything good about this it’s where it started in you because it started in your foot and has to work its way up’.’”
The ALS Association reports that about 30,000 people in the U.S. are currently diagnosed with ALS. About 5,600 people are diagnosed with it each year.
Meanwhile, there is only one drug for ALS that is approved by the U.S. Food and Drug Ad-ministration (FDA). It’s called Riluzole. A blue bottle of it sits on Clingman’s desk in a den otherwise surrounded by photos of loved ones, books – lots of books – of course his computer, and his walker nearby.
Riluzole “slows progression of ALS but does not cure it,” according to NIH. The agency also reports studies that conclude that Riluzole only prolongs life for a range of months.
“It keeps your diaphragm from collapsing, which would prevent breathing,” Clingman explains. But, other, even better medications are being studied.
The New York Times reported in February this year that a new ALS medication called GM6 – still in experimental stages – has now shown to “dramatically slow down the progression” of ALS. The article reports that after using the drug, at least one man “showed small improvements in speech and swallowing, and certain proteins used to signal disease progression actually moved back toward the normal range.”
But, the article, written by Angelina Fanous, a 29-year-old who has been diagnosed with ALS, comes to a similar conclusion that Clingman expressed in the interview.
Fanous writes, “Unfortunately, given the length of time it takes to win approval for a new drug, it will be about 12 years, four billion dollars and many more deaths before GM6 makes it into my medicine cabinet. I will be in a wheelchair, using a feeding tube or dead by then.”
Genervon, the maker of GM6, which it calls GM604, posted a press release on its website March 21 saying it met with the FDA in February and “we have filed a formal request for the Accelerated Approval (AA) Program and are now waiting for a final decision.”
Meanwhile Genervon stresses, “In the U.S., it is illegal to access GM604 without FDA approval or outside a clinical trial.”
An online petition, already signed by a half million peopleat Change.org, offers some hope to influence the FDA to accelerate approval. Here’s the URL: https://www.change.org/p/lisa-murkowski-fda-accelerated-approval-of-genervon-s-gm604-for-use-in-als
The petition appeals to U.S. Senator Lamar Alexander (R-Tenn.), who chairs the Senate Committee on Health, Education, Labor and Pensions; Sen. Patty Murray, the ranking Democrat on the committee; as well as Janet Woodcock, the doctor who is director of the FDA’s Center for Drug Evaluation & Research. About 18 other people, including senators and FDA administrators are also listed.
ALS notwithstanding, Jim Clingman is up for this fight. He is well aware of the petition and hopeful that millions will sign it and that the powers that be will listen.
“The FDA and the bureaucrats won’t allow it to be used…The petition asks them to accelerate the process.”
But, as he waits, he and his family are leaning on their faith, which right now, is everything.
“If I didn’t have that Hazel, I’d be a wreck. I know it. Doctors give death sentences, but God gives life sentences – eternal life.”
He recalls his initial response after receiving the diagnosis, captured in his now daily journal writings. In a nutshell, he says, “First You Cry.”
Next Week, Part II of ‘First You Cry’: Jim Clingman – His Family, Their Faith and Their Fight