[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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