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

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

https://www.azcentral.com/story/opinion/op-ed/2020/05/21/covid-19-patients-have-experimental-drugs-als-patients-like-me-dont/5226684002/?fbclid=IwAR2tQ5rv-HdwbobylKIMpTew5nl6vYLvj8G1_l56YmWbFKPcikkAxCjxp6U

Opinion: COVID-19 patients and their families fought and won experimental treatment drugs. Those with ALS, a cruel terminal condition, deserve the same access.

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 about people healthy one day, on a ventilator the next, often dying alone in a hospital room or if lucky, speaking to a loved one on an iPad before they pass. I am amazed and proud to watch the medical community, companies and government come together to face a crisis and drop everything to win this battle.
This rally to crush COVID-19 is happening while I fight a terminal illness along 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 in order and go do those things on your bucket list while you still can.”

Few clinical trials available for ALS sufferers

This horrific disease takes away one’s ability to use their arms and hands, walk, speak, swallow and ultimately, it takes your ability to breathe. 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 therapy has been approved by the FDA and the manufacturer donated a massive number of doses.

This is an amazing feat of moving science and bureaucracy at light speed to help thwart a common enemy. Yet there are few clinical trials for ALS patients while a person is dying from the disease every 90 minutes in this country.

I benefited from clinical trial, while it lasted

I was fortunate to be one of 200 people who qualified for the BrainStorm Cell Therapeutics NurOwn® clinical trial. At that point, 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 ended for me two months later, I was still cutting my own food and dressing myself.

This therapy seemed to have slowed my disease progression, but after it was over, there was no continuation of treatment, expanded access or accelerated approval. I was out of luck.

We deserve expanded access to trial therapy

The trial will continue this year while I wait and hope the data warrants FDA approval. My ALS will continue to progress, making it difficult to complete the most basic functions.

Trial participants deserve to receive treatment. And the thousands of patients who did not qualify for the trial surely deserve expanded access to experimental drugs just as patients with COVID-19, HIV and cancer often receive.

Please understand, this is not a request for pity or special treatment. It is a request for awareness and access. While scientists are on the hunt for cures and treatments for all diseases, we should be doing whatever is necessary to keep people alive. Expanded access to experimental therapies and drugs are a source of hope and might be part of the solution.

When you are staring death in the face, you want access to experimental medicines and therapies. You want a chance at hope.