Blog#248- 6/24/25
A CRUEL DISEASE
By
Richard Davis
One of the great inequities in the world of medical research revolves around the lack of progress in finding some degree of cure for ALS (amyotrophic lateral sclerosis). I have cared for too many people with ALS over many decades, and there has been very little progress in research since I started my nursing career in 1978.
I have been re-awakened to the misery of ALS because a friend was recently diagnosed. I had a close friend who died of the disease about 10 years ago and it is a difficult experience for everyone involved in caring for a person for ALS. As much as we think we can empathize with someone who has ALS, we really will never know what having ALS feels like.
According to an article from the CDC, “The number of estimated ALS cases in 2022 was 32,893. By 2030, projected cases increase more than 10%, to 36,308. The largest increase occurs for the population ages 66 years and older, with a 25% increase (from16,349 cases in 2022 to 20,438 cases in 2030). The projected number of cases classified as “other race” will increase by15% (from 2,473 cases in 2022 to 2,854 cases in 2030). Conclusions: These estimates of projected ALS cases reflect anticipated changes in the underlying demographics of the United States. Our projections are likely an underestimation because emerging therapeutics and improved healthcare will improve survivability in this vulnerable population. These results should inform policy to more efficiently allocate resources for ALS patients and programs.”
From what I have been able to find, the research for ALS has never been close to that done for many other diseases. Some explanations note that not enough people have the disease to make research worthwhile. In other words, the drug companies don’t think they can make a lot of money from developing drugs and treatments for ALS.
In the current climate of budget cutting by the Trump administration I suspect that funding for ALS research may either dry up or be non-existent. According to the ALS Society, “During FY23, NIH has made strides to implement the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS), which was signed into law by President Biden on December 23, 2021 to support advances in ALS.” Current NIH funding cuts threaten the implementation of this act.
There is some hope for people who have the genetic form of ALS, which affects 10-20% of people with the disease. ALS is caused by genetic mutations in 50% of cases and that means finding a cause for the disease is elusive in the non-genetic form of ALS. Jeffey Agar, a researcher at Northeastern University, has developed a treatment that targets ALS genetic mutations and this may provide some hope for meaningful treatment.
The human side of ALS is another matter. It is a disease that always results in death. Life expectancy averages two to five years but there is great variability. If there is a “good” side to ALS it is that a person has time to determine how they want to be treated as the disease progresses and they can plan for their death. Most of the people I cared for over the years found some comfort in this reality.
I remember one person who was a Jehovah’s Witness and decided to let the disease take its course. She made this decision soon after being diagnosed and she seemed to enter some sort of peaceful, serene state after making that decision. She told me that when she dies she will become a bird that will fly off and be free. We don’t know much about death and an afterlife.
Maybe she was given insight into something few of us understand.
