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Gold Star Families Voices Act

Floor Speech

Location: Washington, DC


Mr. VITTER. Madam President, I rise to bring up two key priorities-- two important unmet needs--which I hope this body and the U.S. House will act on immediately and certainly by the end of the year.

The first is the Steve Gleason Act, legislation I drafted which passed last year but for a limited period of time. We need to make that permanent for reasons I will explain.

The second even broader need is to ensure that victims of the recent flooding in Louisiana--many families whose lives were devastated in incalculable terms--get the aid they need. We made an important downpayment on that before we wrapped up business before the elections, with the understanding that we would clearly revisit the issue between now and the end of the year.

Madam President, first, the Steve Gleason Act. As I said, I am very happy that last year the Senate and the House passed my legislation, the bipartisan Steve Gleason Act of 2015. It provided immediate relief to ALS, or Lou Gehrig's disease, and other similar patients who needed the help to make sure they had access to important, life-changing medical equipment.

I first heard about this need in 2014, when thousands of patients, patient advocates, and others came to Congress in order to bring attention to the devastating consequences of what was then a brandnew Medicare policy. The devices they were concerned with are critical for patients who have lost their ability to speak, to communicate with friends and family and doctors, to call 911 in case of emergency, ALS patients and others with similar debilitating diseases.

These patients are locked in, unable to communicate, and it is only because of miraculous, relatively new devices that they can communicate with caregivers and the outside world. In most cases, this involves their using a computer screen and keypad, where they literally make eye contact with the keyboard on a computer screen, type out a message, and then the computer through a computer voice articulates that message to caregivers, family, doctors, and the outside world.

Because of a Medicare change--an unprovoked, unnecessary change in Medicare policy--many of these patients were denied access to these life-changing devices. The devices were literally confiscated in thousands of cases. They were not allowed to use this technological miracle to make them more fully independent.

Thank goodness, entered Steve Gleason, a superadvocate for the ALS community, an ALS patient himself. Steve is a former player for the New Orleans Saints. He famously blocked a punt during the first game in which the Saints reopened the Superdome after Hurricane Katrina; then, a few years after that, he was diagnosed with ALS himself.

Just as he gave the city of New Orleans a rallying point around which to rebuild after the devastation of Hurricane Katrina, through his organization Team Gleason, Steve also gives the ALS community and their families hope and a rallying point with his motto: ``No White Flags.'' I believe Steve's wife Michel summed up the cause of ALS patients like Steve and their loved ones succinctly when she said:

What causes me the most pain is the loss of his voice, I love hearing his voice. I want him to talk to me, and to our son Rivers. This disease takes his body; to take his voice just seems unfair.

Of course, this is where this life-changing device and this similar medical equipment helps plug the gap. This is why the horrible reversal in Medicare policy caused so many problems.

Steve and I worked together on legislation that would reverse that policy change and would give folks with ALS their voices back. Steve was my guest at the State of the Union speech in 2015. That day, we met with Secretary of Health and Human Services Sylvia Burwell and were able to build major momentum, resulting in Members on both sides of the aisle and both houses of Congress coming together and eventually passing my Steve Gleason Act of 2015, which became law on July 30 of last year. Senator Klobuchar from Minnesota and Senator King from Maine were especially supportive and aggressive in getting this bill to the finish line, and I thank them again for their partnership and their support.

The act reinstated the longstanding Medicare policy to offer immediate relief for patients experiencing incredible difficulty accessing the important life-changing equipment I described. The Steve Gleason Act of 2015 was a huge win for thousands of ALS patients, their families, caregivers, and others, but we need to make this act permanent. It is of limited duration as it was passed last year. We need to make it permanent. It is as simple as that. We need to do it between now and the end of the year.

So I encourage all of my colleagues to come together, as we did last year, to take this commonsense step to empower these patients to be in touch with the outside world and their family and their caregivers-- literally give them voice, literally empower them, as Steve has inspired and empowered so many others with ALS.

Funding for Louisiana Flood Victims

Madam President, I also rise to talk about another key unmet need that is even of broader scope. As I said a few minutes ago, that is the urgent need between now and the end of the year to pass emergency help for the recent flood victims of Louisiana who were devastated by the consequences of that enormous flood.

Unfortunately, because there were lots of other things in the news at the time when that flooding happened in Greater Baton Rouge and Acadiana, a lot of Members and folks around the Nation don't fully appreciate and understand the gravity of that flooding. It was way underreported in the national media. It was way underappreciated and not fully understood by us in the Congress. We have solved some of that in the months since then, but still, to this day, so many Americans don't understand the gravity of that flooding.

The flooding I am describing a few months ago in Greater Baton Rouge and Acadiana in Louisiana is the fourth worst natural disaster we have experienced in a decade or more, only behind Hurricane Katrina, Superstorm Sandy, and Hurricane Ike--the fourth worst natural disaster by any reasonable metric, such as FEMA individual assistance. Louisiana had over 114,000 homes--114,000 homes--with a verified loss. Let's do a comparison to understand the scope of that.

In 2016, Missouri had horrendous flooding, very serious flooding, and I certainly supported an appropriate response there. That was about 2,500 individual registrations. South Carolina had even greater flooding in 2015. That was 26,000 individual registrations. Northern and Central Louisiana in March of this year had major flooding. That was 40,000 individual registrations. We are talking 114,000 homes with verified loss. That is comparable to the loss in New York State from Superstorm Sandy. In Superstorm Sandy, there were 124,000 homes with verified loss in New York--about the same number. Again, we are talking about 114,000 homes in Louisiana. Now, that was not all of Superstorm Sandy, just New York. I am not counting New Jersey. That was another significant number, but that gives us a sense of the magnitude we are talking about.

I thank all of our colleagues and our colleagues in the House and President Obama for proposing the beginning of an appropriate response.

Before we broke for the elections, we did pass significant emergency funding to go beyond the normal help in the Stafford Act and other statutes that pertain to FEMA and related agencies. About $400 million was sent to the flood victims in Louisiana, but by any metric, that can only be the beginning. In fact, President Obama at the time and Congressional leaders at the time pledged that this would be the beginning and that we would come back now and, between now and the end of the year, finish an appropriate response.

I mentioned losses in New York caused by Superstorm Sandy. It was just a little more losses on homes flooded than we are talking about in Louisiana, and yet New York received $8.6 billion related to that in emergency CDBG funds. We are not asking for near that amount, but that gives you a sense of the magnitude of the need. Certainly, the request the Governor and others--including myself and Senator Cassidy--have put forward is fully justified by the numbers, by the metrics.

I would simply ask all of our colleagues in the Senate and all of our colleagues in the House to do the right thing--to look at the facts, to look at the figures, to look at the numbers, and to make the appropriate response, as we have in every other previous disaster, as we did in the lesser flooding in South Carolina, as we did in Missouri, as we did, certainly, with Superstorm Sandy, with Ike, Katrina, and Rita, et cetera--no special treatment. Just look at the numbers and look at the metrics. Do the right thing.

Our request from Louisiana is fully in line with that and fully justified by that precedent. It is a serious natural disaster. It was woefully underreported. So it is important that we all learn more about it, focus on it, understand the magnitude of the loss, and ensure that we respond properly and adequately before the end of the year.

I look forward to continuing to work with all of my colleagues, starting with Senator Cassidy, to do just that.
With that, I yield the floor.

I suggest the absence of a quorum.


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