[Congressional Record Volume 161, Number 58 (Tuesday, April 21, 2015)]
[Senate]
[Pages S2284-S2285]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
STEVE GLEASON ACT
Mr. VITTER. Mr. President, I rise in strong support of S. 984, the
Steve Gleason Act, to help thousands of victims of ALS and other
related diseases all across the United States.
This bipartisan, straightforward bill would give immediate relief to
those folks with ALS, or Lou Gehrig's disease, who are facing
significant problems accessing necessary medical equipment as a result
of three recent changes in Medicare that prohibit access on every
level.
It is important to note that this wasn't a problem until the
administration governing Medicare made it a problem a few months ago.
They affirmatively changed policy, changed rules, and created these
significant access problems. We are talking about devices that are
critical for patients who have lost their ability to speak, to
communicate directly with friends, families, doctors, to call 911 in
case of emergency, to write letters to loved ones. These devices allow
these patients to speak and communicate in light of their loss of voice
and other functions.
This issue was first brought before Congress last year when thousands
of patients, patient advocates, and device manufacturers brought to our
attention the devastating consequences of this new Medicare policy.
Patients were actually having their devices taken away. Many were not
allowed to own their devices or were not permitted to unlock their
devices in order to use all of the technological functions, all of
which continue to be problems and to prevent patients from leading much
more independent lives. As a result, Members on both sides of the aisle
wrote a letter with more than 220 Members advocating on behalf of this
patient population to reverse the Medicare administration decision.
The Senate has that same opportunity for bipartisanship today, to
support this legislation on a strong bipartisan basis. In that spirit,
I thank Senator Klobuchar of Minnesota and Senator King of Maine, who
have been completely supportive and aggressive in getting this bill to
the finish line. They understand the importance of putting patients
first and fixing this extremely misguided and harmful Medicare
regulation that has had a truly devastating impact on the lives of ALS
patients, as well as stroke victims and other folks facing significant
paralysis.
On Tuesday evening, before the Senate overwhelmingly passed a
permanent doc fix, the Senator from Oregon and I reached an agreement
that he would run the hotline on this legislation, the Steve Gleason
Act, and pass this bill for our constituents. That is what we are
working on today, and that is what I absolutely hope to complete today
to get this necessary, important, bipartisan language across the finish
line.
Of course, the ALS Association, a national network group, is
completely supportive.
Mr. President, I ask unanimous consent to have printed in the Record
a letter dated January 27, 2015, on this topic from the ALS
Association.
There being no objection, the material was ordered to be printed in
the Record, as follows:
January 27, 2015.
Hon. Cathy McMorris Rodgers,
House of Representatives,
Washington, DC.
Hon. David Vitter,
U.S. Senate,
Washington, DC.
Dear Representative McMorris Rodgers and Senator Vitter: I
am writing on behalf of The ALS Association to express our
strong support for your legislation that would help preserve
access to speech generating devices (SGDs) and accessories
such as eye tracking technology that are needed to access
SGDs by people with ALS who have lost mobility. The
Association applauds your leadership on these critically
important issues and is committed to continuing to work with
you to enact this legislation as soon as possible.
As you know, the Centers for Medicare and Medicaid Services
(CMS) has taken a number of different actions that limit the
ability of people with ALS to access SGDs and eye tracking
technology. This includes: issuing a ``coverage reminder''
that would have prohibited coverage for SGDs that include
non-speech technology such as email, internet access and
environmental controls; routine denials of coverage for eye
tracking; and implementing a ``capped rental'' payment system
that requires people with ALS to first rent SGDs for a period
of 13 months before owning the device. These policies have
created significant problems for people with ALS who rely on
SGDs for all of their communications needs. For example,
under capped rental if a person is admitted to hospice, a
hospital or a nursing facility during the rental period,
Medicare payment for the SGD will cease. Moreover, capped
rental also prohibits a person with ALS from upgrading their
SGD during the rental period, which means they are not able
to access email, the internet and environmental controls that
are so critical to the day-to-day lives of people with ALS.
The Association strongly supported your efforts and those
of nearly 200 of your colleagues who wrote to CMS expressing
concern about these issues last year and we have worked with
CMS and other stakeholders on these issues as well. We are
grateful that CMS did take action to rescind the coverage
reminder and initiate the process of revising the National
Coverage Determination for SGDs. However, we do not
anticipate that process to be completed until late July 2015
and it may not address the problems created by capped rental
or denials of coverage for eye tracking. In short, these
policies are having a significant negative impact on the
lives of people living with ALS today and there is an urgent
need to take action now. People with ALS, who have been
robbed of the ability to speak and who will lose their life
to ALS in an average of just two to five years, simply do not
have time to wait.
Your legislation is a responsible approach to address an
immediate problem and would help ensure the Medicare program
meets the needs of the people it was created to serve. By
restoring a person's ability to purchase an SGD and ensuring
coverage for eye tracking technologies, your legislation will
enable people with ALS to access the SGDs they need when and
where they need them and ensure they also have access to the
technologies that are so vital to living with this disease.
We look forward to continuing to work with you in support of
people with ALS.
Thank you again for your efforts to champion these critical
issues and help ensure Medicare policies do not take away the
voice of people with ALS.
Sincerely,
Steve Gibson,
Chief Mission Strategy and Public Policy
Officer, The ALS Association.
Mr. VITTER. The association has reached out to members all across the
country and put in very concrete terms what this means to their
members.
I wish to give one brief but very moving and significant example. It
happens to be a woman from Oregon, the State of the ranking member of
the committee. She was diagnosed with ALS in
[[Page S2285]]
January 2014. Her disease, unfortunately, has progressed rapidly. She
is now close to fully paralyzed and has very limited use of her arms
and hands, requiring loved ones to be with her at all times. Her
respiratory system is also affected. She is struggling with the life-
or-death decision of whether to have a tracheotomy procedure and go to
mechanical ventilation or to enroll in hospice and essentially prepare
to die. Her preference is to continue living, as she still enjoys life.
One important factor in the decision for her is that being able to
communicate is a tremendous concern. While she still has some vocal
ability to speak and to be understood currently, she knows that going
on the vent will be the end of her spoken voice and her ability to
vocalize, and she is very worried that if she decides to go on a vent
and prolong her life, she may lose the ability to communicate with the
outside world because of the changes in Medicare policy that prevent
her from accessing email and Internet via this technology we are
talking about. She is also very concerned that Medicare will deny
coverage for the eye-tracking technology she will need in order to use
the SGD--this significant technology we are talking about.
So, bottom line, she is worried that if she decides to continue
living using mechanical ventilation, she will face the prospect of
being locked up and having no means to communicate to help direct her
care. Because of the limitations of SGD coverage, she may actually
choose dying over living, because of that factor. It doesn't get more
direct than that. It doesn't get more stark than that as to why we need
to give these patients access to important communication technology
through the Steve Gleason Act and why we need to act today, why we
cannot delay this any longer.
Of course, Steve Gleason, for whom this act is named, is a superb
advocate for the ALS community. He is the former New Orleans Saints
player who famously blocked a punt in the Saints' first game back in
the Superdome after Hurricane Katrina. After that tremendous feat and
his NFL career, Steve was diagnosed with ALS. Just as he gave the city
of New Orleans hope to rebuild after the devastating storm, through his
organization Team Gleason, he gives the ALS community and their
families hope with his ``No White Flags'' message.
Steve was my guest at the State of the Union speech this past
January, and during his visit to Washington, we met with the Secretary
of Health and Human Services, Sylvia Burwell, and started to gain huge
momentum for the Steve Gleason Act.
This bill again reinstates long-standing Medicare policy--Medicare
policy that was solid and true to these patients until recently--to
offer immediate relief for patients experiencing incredible difficulty
accessing this important technology and equipment. The act expands
access to advancements in technology in a fiscally responsible way.
Michelle Gleason, Steve's wife, summed up the story of ALS patients
and their loved ones this way:
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.
We can offer a voice. It may not be the same voice but a voice for
these struggling patients. This was their lifeline. This was due them
until recently, and now it is not because of this Medicare change.
I urge all of my colleagues to come together around this piece of
bipartisan legislation. Let's pass this today and give a voice--a real
voice, a meaningful voice--to these struggling victims.
Mr. President, this will become law because we have assurances from
House leadership that they are eager to bring the bill to the House
floor. They are eager to finish this important work to change the lives
of patients across the country by giving them back their voice. So I
urge us to come together to do this today, to not delay, to not wait
longer, and to reinstate the voice for ALS patients struggling in this
way all around the country.
I yield the floor.
I suggest the absence of a quorum.
The ACTING PRESIDENT pro tempore. The clerk will call the roll.
The senior assistant legislative clerk proceeded to call the roll.
Mrs. GILLIBRAND. Mr. President, I ask unanimous consent that the
order for the quorum call be rescinded.
The PRESIDING OFFICER (Mr. Scott). Without objection, it is so
ordered.
(The remarks of Mrs. Gillibrand pertaining to the introduction of S.
1027 and S. 1023 are printed in today's Record under ``Statements on
Introduced Bills and Joint Resolutions.'')
Mrs. GILLIBRAND. I yield the floor.
I suggest the absence of a quorum.
The PRESIDING OFFICER. The clerk will call the roll.
The senior assistant legislative clerk proceeded to call the roll.
Mr. DURBIN. Mr. President, I ask unanimous consent that the order for
the quorum call be rescinded.
The PRESIDING OFFICER. Without objection, it is so ordered.
Mr. DURBIN. Mr. President, we are in morning business?
The PRESIDING OFFICER. The Senator is correct. There is 5\1/2\
minutes remaining.
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