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My son Matt was diagnosed with ALS in April 2014. It was just a few months before his ice bucket challenge went viral on social media.
Many people remember this as a rare moment when our country came together in hopes of solving a terrible problem. For our family, it felt like the universe was rallying to our cause.
But hope only goes so far. Nearly a decade later, ALS patients still have no effective treatment, only guaranteed a slow and humiliating death.
If the FDA doesn’t approve this treatment this year, Matt and many other children will die. (St. Petersburg)
Devamestrocel, an experimental treatment under review by the FDA, could change everything. My son Matt is the only person who has received multiple treatments through alternative routes. It helped him regain his ability to breathe, eat and move his hands.
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Now, he is losing what he has gained because he can no longer access treatment. If the FDA doesn’t approve this treatment this year, Matt and many other children will die.
Over the years, I have become close to a group of mothers of children with ALS. Although our community is small, we have built great bonds through our challenges. A mother lost her two sons. Some people, like Matt, had limited access to Devamestrocell through clinical trials and the company’s Expanded Access Program, but now they will have access to the drug.
We all want the opportunity to spend more time with our children and share our belief in this treatment based on our experience with Matt.
By 2018, he was having trouble swallowing, which became a frightening ordeal with frequent choking incidents. Due to the weight of his lungs, breathing was a conscious act that could only be performed while awake, so he slept using a breathing aid. I knew this was a clear sign that we were on an irreversible trajectory toward increasingly invasive respiratory support and death.
Desperate, we petitioned the Department of Veterans Affairs for an experimental drug that uses patients’ own cells to halt the neurodegenerative process and help nerve cells survive. The results were amazing.
The day Matt received his first injection, he nearly choked to death during dinner. However, within a month of starting treatment, he no longer choked while eating. He was able to breathe without mechanical assistance and was able to sleep without respiratory assistance. He was soon able to take off his own sunglasses, scratch his itch, and touch his child’s face.
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Within six months, Matt was able to sit up and stand without help. It could only be described as a miracle. (His medical advances are documented) here. )
Matt was able to receive a total of seven injections. However, as soon as the treatment was discontinued he started to stall and we experienced many of the same nightmares again. Matt can no longer drive a chair or reach out to touch his child’s face. It’s a small mercy that he can still breathe on his own and sleep without support. But knowing what is possible, seeing her son in this condition again breaks this mother’s heart.
Securing FDA approval for Devamestrocel is now the only hope. The advisory committee will meet on September 27 to consider all available data and advise on the way forward. Everything about Matt’s experience supports published clinical trial data and reflects what other participants in clinical trials and expanded access programs have reported. There is no doubt that this treatment has a positive impact on the progression of the disease.
Mothers of children with ALS watch helplessly as their children wither away under the burden of this disease. For those who have realized the benefits of this treatment, each day that passes without making decisions is like a slow death in itself.
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All we ask is that the FDA exercise regulatory flexibility in approving this treatment for all people living with ALS now and those diagnosed in the future.
Although this treatment is not a cure, it does give people living with ALS a chance to survive until another treatment is found. The ALS community has a right to see their disease treated with the same approach as other chronic diseases such as cancer, HIV, and diabetes.
While research continues in search of cures for these diseases, patients are receiving life-extending treatments. Slow, incremental technological innovations have made these diseases eminently treatable.
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I know this treatment worked for my son Matt. It is a travesty to continue to alienate that and to continue to alienate other children who have benefited or could benefit. The horror of waiting only gets worse when I see my dear friends also watching their children decline.
In the case of this treatment, the perfect is the enemy of the good. We will know the fate of our family within a few weeks. The FDA holds their lives in its hands.
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