I want to share with you a cause that I have taken on in Congress that has touched my life through my friend, Pete Frates. Pete, a resident of my district, was diagnosed with ALS in 2012 when he was only 27. You only need to spend a few minutes with Pete to appreciate his courage and resilience. Pete and his family have been fierce advocates for research towards a cure.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive motor neuron disease that affects nerve cells in the brain and spinal cord, leading to the total paralysis and death of those affected. Every ninety minutes someone in the U.S. is diagnosed with ALS and, from the point of diagnosis, projected life expectancy is only 3-5 years.
For people diagnosed with this disease and their families, benefits provided by Medicare and Social Security Disability Insurance are quite simply the difference between life and death. Congress recognized the unique progressive and debilitating nature of ALS in 2001 when it passed a bill waiving the 24-month Medicare waiting period for people with ALS, the only time Congress has ever altered this waiting period.
While this was a step in the right direction, people diagnosed with ALS are still subject to the five-month waiting period before they can begin to receive both SSDI and Medicare, despite the fact that they have qualified for these benefits and have fully paid into the system. The five-month waiting period, established with the inception of SSDI in 1954, is well-intentioned in that it allows time for temporary conditions to reverse. But this standard simply does not apply to ALS. ALS is not a temporary condition. It is always progressive, debilitating, and fatal. In fact, 50% of people diagnosed with this disease will die within 16 months of diagnosis. Asking these patients and their families to wait five months before they can begin to receive the benefits they need to live is cruel. That is why I am taking action.
My new bill, the ALS Disability Insurance Access Act, would waive the five-month waiting period, and allow people with ALS to receive their SSDI and Medicare benefits as soon as the Social Security Administration grants them approval. This will ensure that people diagnosed with this disease are able to access and receive the care they need within the first critical months of diagnosis, and that their families are able to receive benefits to enable them to continue to meet their basic daily needs.
This simple, bipartisan measure can improve the lives of individuals with this disease and their families. This is a solution that both Republicans and Democrats should be able to get behind for a disease that has no known cures, preventions, or causes. We all know someone who has either suffered from the disease or participated in the Ice Bucket Challenge for someone they love. We owe this bill to them, and to Pete. This piece of legislation should also serve as an example of the work that could be accomplished by coming together to improve healthcare for hardworking Americans, rather than fighting with each other to take it away from millions.
The opinions expressed in “Congressional Corner” reflect the views of the writer and are not necessarily those of TSCL.