[Congressional Record Volume 161, Number 110 (Wednesday, July 15, 2015)]
[House]
[Pages H5214-H5217]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                       STEVE GLEASON ACT OF 2015

  Mr. RYAN of Wisconsin. Mr. Speaker, I move to suspend the rules and 
pass the bill (S. 984) to amend title XVIII of the Social Security Act 
to provide Medicare beneficiary access to eye tracking accessories for 
speech generating devices and to remove the rental cap for durable 
medical equipment under the Medicare Program with respect to speech 
generating devices.
  The Clerk read the title of the bill.
  The text of the bill is as follows:

                                 S. 984

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Steve Gleason Act of 2015''.

     SEC. 2. PROVIDING MEDICARE BENEFICIARY ACCESS TO EYE TRACKING 
                   ACCESSORIES FOR SPEECH GENERATING DEVICES.

       (a) In General.--Section 1861(n) of the Social Security Act 
     (42 U.S.C. 1395x(n)) is amended by inserting ``and eye 
     tracking and gaze interaction accessories for speech 
     generating devices furnished to individuals with a 
     demonstrated medical need for such accessories'' after 
     ``appropriate organizations)''.
       (b) Effective Date.--The amendment made by subsection (a) 
     shall apply with respect to devices furnished on or after 
     January 1, 2016.

     SEC. 3. REMOVING THE RENTAL CAP FOR DURABLE MEDICAL EQUIPMENT 
                   UNDER MEDICARE WITH RESPECT TO SPEECH 
                   GENERATING DEVICES.

       Section 1834(a)(2)(A) of the Social Security Act (42 U.S.C. 
     1395m(a)(2)(A)) is amended--
       (1) in clause (ii), by striking ``or'' at the end;
       (2) in clause (iii), by adding ``or'' at the end; and
       (3) by inserting after clause (iii) the following new 
     clause:
       ``(iv) in the case of devices furnished on or after October 
     1, 2015, and before October 1, 2018, which serves as a speech 
     generating device or which is an accessory that is needed for 
     the individual to effectively utilize such a device,''.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Wisconsin (Mr. Ryan) and the gentleman from Washington (Mr. McDermott) 
each will control 20 minutes.
  The Chair recognizes the gentleman from Wisconsin.


                             General Leave

  Mr. RYAN of Wisconsin. Mr. Speaker, I ask unanimous consent that all 
Members may have 5 legislative days within which to revise and extend 
their remarks and to include extraneous material on S. 984, currently 
under consideration.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Wisconsin?
  There was no objection.
  Mr. RYAN of Wisconsin. Mr. Speaker, I yield myself such time as I may 
consume.
  I rise in favor of the Steve Gleason Act. This bill would expand 
access to life-changing equipment called SGDs, otherwise known as 
speech-generating devices.
  People with severe diseases like ALS or Parkinson's need these 
devices to communicate. They often add SGDs as accessories to their 
wheelchairs.
  Now, for a long time, Medicare has covered their wheelchairs and 
these devices and people have been able to buy SGDs so they can 
customize their devices.
  There is one device that I have seen that is just incredible. It is 
called an

[[Page H5215]]

eye-gaze. It allows someone to use one's eyes to actually navigate a 
computer and hit the mouse click to do things like turn on the TV, go 
on the phone, speech communication, everything. It is just incredible, 
but there is a problem.
  Two years ago CMS changed the policy. Before, you could buy this and 
you could add an upgrade to it. CMS changed the policy, and seniors now 
have to rent an SGD for 13 months before they can buy it.
  What is worse, Medicare will stop making these rental payments if a 
senior citizen makes an upgrade that is not directly related to speech.
  As you also know, Mr. Speaker, not just seniors go on Medicare. 
People with certain disabilities as well are allowed to go on Medicare; 
so this affects people of all ages.
  This change is so sweeping that Medicare is refusing to pay for 
things like an eye-gaze, the very thing that patients need in order to 
use their SGDs.
  This bill would remove the 13-month rental requirement so as to allow 
seniors to buy their SGDs immediately. It would also make sure that 
Medicare continues to cover SGDs if they are entering nursing homes.
  The people who need these devices are truly the most disabled and 
most vulnerable among us. The whole point of Medicare is to protect 
these very patients and to give them the care that they need.
  And this bill goes to the heart of Medicare's mission. It goes to the 
heart of fixing a flaw that I think everybody recognizes needs to be 
fixed.
  Mr. Speaker, I yield 2 minutes to the gentlewoman from Washington 
(Mrs. McMorris Rodgers), our distinguished Conference chair.
  Mrs. McMORRIS RODGERS. I thank the chairman for yielding.
  Mr. Speaker, last summer more than 17 million people participated in 
the ice bucket challenge to raise awareness of the crippling disease of 
ALS and the physical and emotional toll it takes on millions of men and 
women and their families.
  Around the same time, Gail Gleason, who is the mother of former NFL 
star Steve Gleason, who has ALS, came to me with concerns about 
Medicare denying access to cutting-edge speech-generating technology 
for patients who are living with degenerative diseases.
  Gail and Steve feared thousands of people would lose their ability to 
communicate with the world around them, to share their stories, order 
coffee, tell jokes, ask for help, say ``I love you.''
  Before eye-tracking technology became available, once people lost 
their ability to type, they could no longer communicate, but all that 
has changed with revolutionary technology.
  Today patients can continue communicating by typing with their eyes, 
but top-down, government-knows-best rules and regulations threaten to 
take it all away for those who need it most.
  I pledge to do everything within my power to fix this, and I am proud 
to help steer this bill through Congress, from the start to the finish, 
with the help of Majority Leader McCarthy, Majority Whip Scalise, 
Representative Paulsen, and Senator Vitter.
  So many have joined us in this effort. We led a letter with more than 
200 Republicans and Democrats to push CMS to investigate this arbitrary 
decision, and I am proud today to stand to help support the effort to 
send the Steve Gleason Act to the President's desk.
  Mr. Speaker, life-changing innovation cannot help people when it is 
collecting dust on a desk or is getting caught up in red tape. Because 
of Gail Gleason and Steve Gleason, thousands of Americans living with 
degenerative diseases can have peace of mind today that their voices 
will continue to be heard and that they will still be able to say ``I 
love you.''
  Mr. McDERMOTT. Mr. Speaker, I yield myself such time as I may 
consume.
  I rise today in support of S. 984, the Steve Gleason Act. This 
legislation is named after Steve Gleason, a former professional 
football player for the New Orleans Saints and a native of Washington 
State.
  The bill will increase access to speech-generating devices that help 
patients living with ALS and other neurological disorders. ALS is what 
is commonly known as Lou Gehrig's Disease.
  Under current law, speech-generating devices are treated as capped 
rental items by Medicare, requiring beneficiaries to rent their devices 
for 13 months before they are able to own them. This cap has made it 
difficult for many beneficiaries to have access to these devices.
  In a recent national coverage determination, CMS has already begun 
providing payment for speech-generating devices. This is a good step, 
but it does not necessarily ensure continued payment for the devices if 
a beneficiary moves from a post-acute facility, such as a nursing home.
  This legislation makes a simple fix that will eliminate the rental 
cap and clarify that beneficiaries may purchase speech-generating 
devices immediately.
  It will ensure payment for these devices even if a beneficiary is 
admitted into a facility for which payment is bundled into a post-acute 
facility payment.
  It will improve the Medicare program, and it will make a meaningful 
difference in the lives of beneficiaries who are living with ALS.
  I am pleased to see the chairman out here pushing this, and I am glad 
to join with him. I hope someday I will join with him to provide 
hearing aids to senior citizens who are having trouble paying for them 
today.
  I reserve the balance of my time.
  Mr. RYAN of Wisconsin. Mr. Speaker, I yield 2 minutes to the 
gentleman from Louisiana (Mr. Scalise), the distinguished majority 
whip.
  Mr. SCALISE. I thank the gentleman from Wisconsin for yielding and 
for his leadership in bringing the Steve Gleason Act to the floor.
  Mr. Speaker, Steve Gleason is somebody who has served as an 
inspiration for the people of Louisiana for a long time, going back, of 
course, to the 2006 game when the Superdome was reopened after 
Hurricane Katrina.

  That night was really one of the galvanizing moments that helped 
bring the city of New Orleans back, that helped reinspire the people of 
New Orleans to come back.
  It was Steve Gleason who blocked the punt at the end of the game to 
win the game. I was in the Dome that night. I know my wife, Jennifer, 
and I were as euphoric as everybody in that building.
  The reason that Steve Gleason inspires people today, Mr. Speaker, is 
not because of what he did on the football field. It is because of what 
he has done to serve as an inspiration for people all across the 
country, people with all disabilities, since he was diagnosed with ALS, 
with Lou Gehrig's Disease.
  What he has done is to go out and show that he is able to exhibit his 
voice because of the speech-generating device that he has.
  This isn't something that he just wants for himself. He wants this 
for all people who have something to say, who have that same voice, to 
be able to go out and inspire other people.
  When CMS made the change in policy that started to take away that 
voice, he spoke up, as so many others did, and said, ``We need to 
reverse this.''
  I commend Senator Vitter for bringing the legislation forward that we 
are debating that was passed through the Senate, for this is a bill 
that truly will give voice to thousands of people.
  Over 5,000 people every year are diagnosed with Lou Gehrig's Disease, 
with ALS. They all have something to say. They all have that voice.
  The Steve Gleason Act will give them that voice so they can go out 
and continue to achieve their lives' potential.
  I urge the passage of this legislation.
  Mr. McDERMOTT. Mr. Speaker, I yield 2 minutes to the gentleman from 
Louisiana (Mr. Richmond).
  Mr. RICHMOND. Mr. Speaker, I join my colleague and my friend, 
Majority Whip Steve Scalise, in advocating for and in asking our 
colleagues to vote today for the Steve Gleason Act.
  Steve's name is on it, but it is a lot bigger than Steve. If you know 
Steve and what he stands for, you will understand that this bill and 
this fight on behalf of him and his family--the fight that they have 
fought--benefits thousands of people in our society who really need the 
help.
  That is why last year I was happy to join in a letter with Mrs. 
McMorris Rodgers to CMS, asking them to change this policy.
  It is important to put patients first and to fix this extremely 
misguided

[[Page H5216]]

and harmful Medicare regulation that has had a devastating impact on 
the lives of ALS patients, stroke victims, and other folks who are 
experiencing significant paralysis. It has really prohibited them from 
talking to and communicating with their families.
  I think Steve did a great job of expressing what Steve means to the 
people of New Orleans. Gleason's actions on the football field and his 
actions since being diagnosed with ALS really exemplify the resilience 
that the people of New Orleans have had after being knocked down time 
and time again from hurricanes and other things.

                              {time}  1645

  But just as Steve stood up and just as the city of New Orleans stood 
up to help themselves, government has a responsibility to make the 
lives of people better and to help them help themselves, and that is 
what this does.
  I will give you Steve's words. He said: If we have a purpose in life 
beyond being a cog in the human machine, mine is to help inspire 
people. And that is pretty cool.
  What I would like to say today is that Steve inspired Congress to 
make the lives of thousands and thousands of people better; and what 
Steve was able to do was bring out the best of what is in this body, 
and that is both sides working together to make sure that we do 
tangible things to improve the lives of the people whom we represent.
  I am proud to stand here with my colleagues on both sides of the 
aisle and enjoy the benefit of their hard work and a team effort to do 
this. So I would just encourage my colleagues to vote for the Steve 
Gleason Act.
  Mr. RYAN of Wisconsin. I yield 2 minutes to the gentleman from 
Minnesota (Mr. Paulsen), a distinguished member of the Ways and Means 
Committee.
  Mr. PAULSEN. Mr. Speaker, let me first thank the chairman for his 
leadership on this issue.
  As has already been mentioned, last summer, millions of Americans 
participated in the ice bucket challenge, raising more than $100 
million to combat ALS, or Lou Gehrig's disease.
  What most people don't realize, though, is at the exact same time 
this movement was sweeping the Nation, the Centers for Medicare and 
Medicaid Services was implementing misguided policies to deny access to 
speech-generating devices for those patients with ALS and other 
degenerative conditions. Now, for many people who have ALS, speech-
generating devices and the eye-tracking technology that is often used 
with these devices are the only way to communicate with your loved 
ones, with families, friends, and others.
  In response to the agency's new policies, Representative Cathy 
McMorris Rodgers and I led a bipartisan letter with over 200 
Republicans and Democrats asking for changes to the proposals. While 
the agency has taken some actions to roll back some of the rules, we 
have got to guarantee that these patients will have access to speech-
generating devices.
  That is why Senator Vitter, Representative McMorris Rodgers, and 
Majority Whip Scalise and I first introduced the Steve Gleason Act. 
Now, this bill gets its name, as was mentioned, from former New Orleans 
Saints safety Steve Gleason. Steve famously blocked a punt, resulting 
in the first touchdown for the New Orleans Saints in their dramatic 
return to the Superdome after Hurricane Katrina. Today, Steve faces a 
new opponent as he battles ALS. This bill is for Steve and the millions 
of people who have ALS.
  The ice bucket challenge was a good start, but there is more we can 
do to help people with that deadly disease. Instead of limiting access 
to life-improving devices, we should be embracing 21st century cures 
and technologies that empower millions of Americans living with 
degenerative disabilities to have a better life and communicate with 
their family, friends, physicians, and loved ones.
  I am glad we could come together in a bipartisan manner to embrace 
innovation and help so many patients, Mr. Speaker. I encourage passage 
of this important legislation.
  Mr. RYAN of Wisconsin. I yield 2 minutes to the gentleman from 
Louisiana (Mr. Boustany), a distinguished member of the Ways and Means 
Committee.
  Mr. BOUSTANY. Mr. Speaker, to thousands of Americans living with ALS 
and end-stage Parkinson's disease, the Steve Gleason Act literally 
means the difference between the ability to speak and silence.
  I had the great privilege 2 weeks ago to spend about an hour with 
Steve and his mother in Steve's home in New Orleans. You have heard 
about Steve's exploits on the football field and how he inspired so 
many in that first return back to the Superdome after Katrina. But 
Steve lost his ability to speak and is wheelchair bound due to ALS. 
This happened earlier this year. His 2011 diagnosis could have been a 
tragedy, but he turned it into something amazing and good.
  When I visited with Steve, it was amazing to see the fire and the 
spirit in his eyes because, despite all that has happened to him, he is 
determined to help a lot of people. He told me: I am not going to give 
up until you guys pass this legislation so we could help so many others 
who don't have access to this technology that I have been blessed to 
have.
  So Steve started Team Gleason, an advocacy organization. Its main 
priority is to raise awareness for ALS. And Steve is communicating, 
using this amazing technology, but he knows not all individuals with 
ALS or end-stage Parkinson's have the resources to be able to afford 
these expensive devices.
  This bill is named for Steve because of his tireless advocacy, and 
this final legislation will provide the resources to give voice to 
thousands of individuals living across this country with ALS, end-stage 
Parkinson's, and other types of neurological disorders.
  I am proud to have played a little role on the Ways and Means 
Committee with my chairman to help move this bill through. I think this 
is a very proud day for America. We are happy for Steve and his 
advocacy and happy for so many individuals who are caught with this 
very difficult disease.
  Mr. RYAN of Wisconsin. I yield 2 minutes to the gentleman from 
Washington (Mr. Reichert), another senior member of the Ways and Means 
Committee.
  Mr. REICHERT. Mr. Speaker, I thank the chairman again for yielding to 
me today.
  I rise today to support the Steve Gleason Act of 2015. I have never 
had the honor of meeting Steve; however, he is a native Washingtonian.
  I have had the honor of knowing a good friend and partner who passed 
away from ALS while I was with the sheriff's office back in Washington 
State in King County in the city of Seattle. His name was Jim. And I 
have heard people talk about Steve, his inspiration, and the fight and 
fire in his eyes this afternoon, and Jim had that same inspiration to 
those around him and had that same fire in his eyes.
  He came to work every day. And people noticed there was something a 
little bit different, not quite right about Jim, but Jim just said, you 
know: I had an operation on my knee.
  He limped into work and he committed himself to doing the job and 
getting it done. He was working on one of the biggest serial murder 
cases this country has ever known, the Green River case. He lived long 
enough to interview the person that we finally arrested, which took us 
19 years. He stayed alive long enough to interview--I am not even going 
to mention that person's name on the floor of the House.
  Jim was a good friend. For CMS to make a ruling like this, to 
withhold commonsense medical devices for people who need it, to help 
Americans across this country, is almost unbelievable and illogical. 
CMS has made other rules, too, denying medical devices for people with 
lymphedema, for example, commonsense medical devices, like garments to 
help them live a normal life.
  I am so pleased to hear today that we are able to change this rule to 
help people with ALS communicate, to be able to say, ``I love you.''
  Mr. McDERMOTT. Mr. Speaker, I urge my colleagues to vote for the 
bill, and I yield back the balance of my time.
  Mr. RYAN of Wisconsin. Mr. Speaker, I yield myself such time as I may 
consume for the purpose of closing.
  Mr. Speaker, as I saw Steve Scalise talk about that play--I am a big 
NFC fan, and I remember that play. My

[[Page H5217]]

friend Aaron Stecker, who is a friend of mine from Wisconsin, played on 
that team at that time. I just have to say, Mr. Speaker, in America, we 
have all of these heroes, and the best among us are the heroes that 
have been so high and have been brought so low but have come back up 
and have shown a great example of courage to the rest of us.
  We are very pleased to be bringing this bill to the floor. I 
basically want to thank the members of the Louisiana delegation for 
bringing this issue to our attention, for making us know about this.
  This is one of those things where the bureaucracy just got it wrong. 
The bureaucracy basically came up with a rule that effectively denied 
these devices to people, which means they can't live a full life.
  These SGDs are invaluable. They are absolutely essential for people 
suffering from ALS to be able to communicate and to be able to 
function. I had a constituent at a town hall meeting walk me through 
how his eye gaze technology worked as a part of SGD, and it is just 
truly remarkable.
  So this is one of those issues that speaks to absolute common sense. 
The bureaucracy got it wrong, and this is Congress in action. This is 
democracy in action. Our constituents brought us an issue. We 
understood that there was a problem that needed to be solved. So, in a 
bipartisan basis, here we are, passing legislation, fixing this problem 
so that we can make sure that this program, Medicare, fulfills its 
mission by making sure that it is there for the people who need it. 
That is democracy.
  I want to thank the people from Louisiana for bringing this to our 
attention. I urge the passage of this bill.
  I yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Wisconsin (Mr. Ryan) that the House suspend the rules 
and pass the bill, S. 984.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the bill was passed.
  A motion to reconsider was laid on the table.

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