I’m happy COVID-19 patients can access experimental drugs. Too bad those of us with ALS can’t – AZCentral

Phil Green, Opinion contributor Published 6:30 a.m. MT May 21, 2020

ALS stands for amyotrophic lateral sclerosis, but is more commonly known as Lou Gehrig's disease. It's a neurodegerative disease that breaks down nerve cells in the brain and spinal cord, causing paralysis, according to the ALS Association website. By dumping a bucket of ice water over your head and filming it, you participated in the ALS Ice Bucket Challenge to encourage donations and raise awareness about ALS.(Photo: Photo: Brad Vest/AP)

I watch the stories on the news aboutpeople healthy one day, on a ventilator the next,oftendying alone in a hospital room or if lucky,speaking to a loved one on aniPadbefore they pass.I am amazed and proud to watch the medical community, companies and government come together to face a crisis and drop everything towin this battle.

This rally to crush COVID-19is happeningwhileIfightaterminal illnessalong with about 30,000 other Americans.

I may not die today, this week or next month, but my disease has no cure and no effective treatments.I was a 48-year-old athletic father of four when I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) and told,Get your affairs inorder andgo do those things on your bucket list while you still can.

This horrific disease takes away ones ability to use their arms and hands, walk, speak, swallowand ultimately, it takes your ability tobreathe.For most, this happens within two to five years.

COVID-19 patients and their families are fighting to get experimental treatment drugs and sure enough, in less than six months,a new therapyhas beenapprovedby the FDAand the manufacturer donated a massive number of doses.

This isan amazing feat of moving science and bureaucracy at light speed to helpthwart a common enemy.Yet there are few clinical trials forALS patients while a person is dying fromthe diseaseevery 90 minutes in this country.

Iwas fortunate tobe one of 200 people who qualifiedfor theBrainStormCell TherapeuticsNurOwnclinical trial.At thatpoint,my hands were so weak, I struggled to button my shirt or control a fork.

I was more than willing to endure the bone marrow harvest and seven lumbar punctures over the next 11 months because of the hope this treatment represented for me and others living with ALS.In September of 2019, I received the last of three stem cell transplants into my spine. And as the trial endedfor metwo months later, I wasstillcutting my own food and dressing myself.

This therapyseemed tohave slowed my disease progression, but afteritwas over, there was nocontinuation of treatment, expanded access oraccelerated approval.I was out of luck.

The trial willcontinuethis year whileI wait andhope thedatawarrantsFDA approval.My ALS will continue to progress, making it difficult tocomplete the most basic functions.

Trial participants deserveto receivetreatment.And the thousands of patientswho did notqualifyfor the trialsurely deserve expanded access to experimental drugs just as patients with COVID-19, HIVandcanceroften receive.

Please understand, thisis nota request for pity orspecial treatment.It is a request for awarenessand access.While scientists are on the hunt for cures and treatments foralldiseases, we should be doing whatever is necessary to keep people alive.Expanded accessto experimental therapies and drugs are asource ofhope and might be part of the solution.

When you are staring death in the face, you want access to experimental medicinesand therapies. You want a chance athope.

Four years after doing the Ice Bucket Challenge, Phil Green was diagnosed in August 2018 with ALS. Green, a father of four, ishelping multiple ALS organizations and institutions promote ALS legislation and policy issues, increasing awareness and raising funds to find effective treatments and cures. Reach him atphil@philyourheart.org; on Twitter, @pjgreen.

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I'm happy COVID-19 patients can access experimental drugs. Too bad those of us with ALS can't - AZCentral