It is a tragedy when anyone suffers from ALS. This progressive, neurodegenerative disease rapidly attacks the nerve cells in the brain and spinal cord, and eventually affects control of the muscles needed to move, speak, eat, and breathe.
And sadly, it is always fatal. The average life expectancy is only two to five years after diagnosis.
Not only are the people who suffer from this disease robbed of time, but also of their ability to work – imposing even greater hardship on them and their families.
The bill before us aims to help these victims by reforming our Social Security Disability Insurance program – a good cause I think we all support. But I think it goes about the job in the wrong way, it sets bad precedent, and it fails to include other needed reform.
Mr./Madam President, we must remember that ALS, Lou Gehrig’s Disease, is one of many similarly debilitating and deadly diseases Americans are suffering today. While not as well known, all of these victims are also deserving of the same kind of special attention and accommodation in federal policy.
Let’s review some of the background of the program.
The Social Security Disability Insurance program, “SSDI,” was created in part to help people who suffer from conditions like ALS, providing monthly cash benefits to those who become disabled and unable to work.
One challenge with a program like this is that the agency administering the program – in this case the Social Security Administration – has to verify an applicant’s eligibility for benefits before they start sending out the checks. Today, eligibility determination takes an average of three-and-a-half months. For some people and some diseases, including ALS, three-and-a-half months can be a dangerously long time.
So in 2018, the SSA established a new policy to fast-track the application process for those with serious, urgent medical conditions. Under this Compassionate Allowance Initiative, more than 200 diseases now automatically make applicants eligible for expedited review.
But while the Compassionate Allowance Initiative shortened the determination process from an average of several months to an average of 39 days, there is still a lengthy 5-month waiting period to actually start receiving the benefits.
And in the case of urgent, fatal disease, that is still too long to wait.
The bill before us seeks to address this problem – but only for victims of ALS.
Now, we should try and help the victims of this tragic disease to the best of our abilities. But they are not the only ones who need to be helped.
Of the list of Compassionate Allowance conditions, some are just as urgent as ALS…. and some are even worse. There are sadly several for which there is no known cure and that have life expectancies that are terribly short.
For instance, Creutzfeldt-Jakob disease, a degenerative brain disorder. This disease leads to dementia, and most often results in death within 6 to 12 months. Tragically, there is no cure; and around 1,000 Americans are diagnosed with it every year.
Another is cardiac amyloidosis, otherwise known as “stiff heart syndrome.” This disease affects the way electrical signals move through the heart, leading to abnormal heartbeats and faulty heart signals. For those diagnosed, there is no known cure; and they typically face a life expectancy of only 6 months after onset of congestive heart failure. About 4,000 people develop this condition each year.
Or take peritoneal mesothelioma. This disease is a cancer that develops in the lining of the abdomen, generally leading to death within 12 months from first signs of illness. And around 600 cases are diagnosed every year in the United States.
That’s why I have been working for the past year with my colleagues to broaden the scope of this legislation, so Congress doesn’t waive the SSDI waiting period one disease at a time.
It should not matter which fatal, rapidly progressing, debilitating disease an American is suffering – all fatal diseases with no known cure should have access to disability benefits after their SSA determination.
Mr./Madam President, the men and women who suffer from these conditions have precious little time left… and they are just as worthy of help.
There is always hope that a cure can be found for them; or that at the very least, a new treatment can further extend the life of these men and women.
Rather than removing the waiting period for those with one specific disease, we should remove the waiting period for those who suffer from a small, select group of conditions that are most urgent and have the shortest life expectancies.
There is no reason we cannot help those who suffer from ALS and these other conditions.
In fact, the bill as written sets the stage for only those diseases that have the most recognition – and the most fundraising backing – to find bill sponsors. And it would set at a disadvantage the conditions that are more rare and more underfunded.
Mr./Madam President, who will be a voice for the men and women who suffer from these diseases? Who will fight for them?
Adding similarly cruel maladies to this list takes nothing away from ALS, and it can make all the difference in the world for Americans suffering similar disabilities.
I had hoped to offer my broader approach as an amendment after months of working with SSA and CBO. But unfortunately, I was given incomplete information at the time this vote was arranged to be scheduled.
I appreciate Senator Cotton’s and Senator Braun’s patience in allowing me to work towards a fix, while they remained committed to advancing their legislation.
Additionally, while I would have hoped my work with SSA and CBO could have gone more quickly, I appreciate their efforts to address my questions and compile the necessary information and tools to estimate my amendment’s impact.
While I was pleased to see Senator Grassley’s amendment, which at least would have paid for the removal of the waiting period for ALS, I will continue to work on legislation that will remove the waiting period for diseases that meet a set of criteria – no known cure with a life expectancy of less than five years – while not further jeopardizing the solvency of the DI program.
Mr./Madam President, my concerns and efforts have not been about the waiving of the SSDI waiting period for those who tragically suffer from ALS. I certainly agree that we ought to improve the time that they have left.
But picking and choosing favorites among those with comparable conditions is not the right way to go about it.
The lives of the men and women who suffer from other, similar conditions are just as valuable… and we should be a voice for them, too.
I yield the floor.