When I was about 8 years old, I asked my mother about my grandmother, and she shared her mom died when she was 10 years old from “paralysis.” What my mother never knew was that I was afraid when I turned 10 years old, she would die of “paralysis,” just like her mom. Little did I know a mere 10 years later that fear would come true. And that is the beginning of my journey in life with the beast known as ALS.
In most cases, a person with a mutation in an ALS-linked gene usually has a 50-50 chance of passing it on to their children. But just because someone inherits an ALS-linked gene, it does not automatically mean they will develop the disease, and family members who develop ALS may have different disease experiences.
The fight for the Genetic Testing Protection Act in Maryland continued Thursday with ALS Association leaders pressing the state’s House of Delegates to advance the policy. The bill would prohibit companies that offer life insurance and disability insurance in that state from using the results of genetic testing to deny coverage or engage in price discrimination. Similar bills have been proposed in New York, Illinois and Tennessee.
ALS Association leaders and people living with ALS urged Maryland senators to advance legislation that would prohibit companies that offer life and disability insurance from using the results of genetic testing to deny coverage or influence pricing decisions. John Knowles, a caregiver for his wife, Teri, testified about the impact familial ALS has had on his family. Teri’s twin sister died in 2013, and another sister died in 2020 after living with ALS. John talked about the need for genetic testing for family members and the fear that the results could be used against them.
ALS Association leaders and advocates from the ALS community will press lawmakers in Maryland to pass legislation that would prevent insurance companies from using genetic testing information to deny coverage or influence price considerations.
Maryland lawmakers are considering a bill spearheaded by The ALS Association that would prohibit life insurance, long-term care insurance, and disability insurance policies from discriminating against people based on the results of a genetic test.
When the FDA recently accepted Biogen’s new drug application for tofersen, it signaled hope for thousands of people with SOD1 mutations that cause ALS. The FDA has granted priority review to this new drug application and is expected to decide on whether or not to approve tofersen by January 25, 2023.
The researchers focus on an earlier phase of ALS development, which is commonly understood to be a “silent” phase – before symptoms of the disease begin to manifest. Those minor motor impairments in the earlier phase are currently insufficient for a confirmed diagnosis.
Jackie Heltz is a producer, filmmaker, and writer with a passion for issue-driven documentaries. She is also a dedicated volunteer in the fight against ALS.
The ALS Association, in collaboration with ALS Finding a Cure, recently awarded $400,000 to support research into the role SARM1 gene mutations play in the development and progression of ALS, with the ultimate goal of using an improved understanding of SARM1 to develop new treatments.