[Congressional Record (Bound Edition), Volume 161 (2015), Part 4]
[Senate]
[Pages 5233-5234]
[From the U.S. 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 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

[[Page 5234]]

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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