ALS Disability Insurance Access Act of 2019

Floor Speech

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Mr. LEE. Mr. President, it is nothing short of a tragedy when anyone suffers from ALS. This is a progressive neurodegenerative disease, one that attacks the nerve cells in the brain and the spinal cord of its victims and eventually affects control of the muscles, even the muscles that are needed to move, to speak, eat, breathe, and otherwise live.

Sadly, this is a disease that is always fatal. The average life expectancy is only 2 to 5 years following diagnosis. Not only are the people who suffer from ALS robbed of time but also their ability to work, imposing great hardships on them and on their families.

The bill that we had before us today to help these victims by reforming our Social Security Disability Insurance Program is a good cause, and it is one that 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.

We must remember that ALS, Lou Gehrig's disease, is one of many similarly debilitating and deadly diseases that Americans are suffering from 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, or SSDI, was created, in part, to help people who suffer from conditions like ALS, providing monthly cash benefits to those who become disabled and therefore unable to work.

One challenge with a program like this is that the agency administering the program, that is, the Social Security Administration, has to verify an applicant's eligibility for benefits before they can start sending out the checks. Today, eligibility determination takes an average of 3\1/2\ months. For some people and for some diseases, including ALS, 3\1/2\ 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 and 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 shortens 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 diseases, that is still too long of a wait.

The bill that we have before us today seeks to address this problem but only for the victims of ALS. Now, obviously, we should try and help the victims of this tragic disease to the very best of our ability. They are not, however, 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.

I want to cite some examples. For instance, Creutfeldt-Jakob disease, a degenerative brain disorder, is among these. This particular 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 single year, including a dear friend of mine in Utah who a couple of years ago passed away from this ailment.

Another is cardiac amyloidosis, also 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 about 6 months after the onset of congestive heart failure. About 4,000 people develop this condition each year.

Take peritoneal mesothelioma, this disease is a cancer that develops in the lining of the abdomen, usually leading to death within 12 months of the first signs of illness. Around 600 cases are diagnosed every year in the United States.

That is why I have been working for the past year with my colleagues to broaden the scope of this legislation, so that Congress doesn't waive the SSDI waiting period one disease at a time. It should not matter which fatal, rapidly progressing and debilitating disease an American is suffering from--all fatal diseases with no known cure should have access to disability benefits after their Social Security Administration determination.

The men and women who suffer from those conditions and the family members affected by their ailments have precious little time left, and they are just as worthy of help. They are certainly no less worthy of help than those with ALS. 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 any of a small select group of conditions that have no cure and have the shortest life expectancies. There is no reason we cannot help those who suffer from ALS and these other conditions. We can walk and chew gum at the same time. We can protect victims of ALS and these other conditions as well.

The bill, as written, sets the stage for only those diseases that have the most recognition and, to put it bluntly, the most fundraising backing to fund bill sponsors, and it would set at a disadvantage the conditions that are far more rare and underfunded. Who will be the voice for the men and women who suffer from those 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 from similar disabilities.

I had hoped to offer my broader approach as an amendment, but after months and months of working with the Social Security Administration and with the Congressional Budget Office, I was, unfortunately, given incomplete information at the time an agreement was reached on scheduling a vote on this bill. I appreciate Senator Cotton's and Senator Braun's patience in allowing me to work towards a fix while they remain committed to advancing their legislation, for which I commend them.

Additionally, while I would have hoped that my work with the Social Security Administration and the Congressional Budget Office could have gone more quickly, I do appreciate their efforts to address my questions and compile the necessary information and tools to estimate my amendment's fiscal 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 5 years--while not further jeopardizing the solvency of the disability insurance program. It will be ready for introduction soon.

My concerns and efforts have not been about waiving 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 very similar conditions are just as valuable, and we should be a voice for them, too.

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