[Congressional Record Volume 165, Number 72 (Thursday, May 2, 2019)]
[Senate]
[Pages S2599-S2600]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]



                          Alzheimer's Disease

  Mrs. CAPITO. Mr. President, as we begin the month of May, which we 
are just 2 days in now, and our Nation's observance of Older Americans' 
Month, I come to the floor to speak on a topic that is very close to my 
heart, and that is Alzheimer's disease.
  Like so many Americans, I have felt the impact of this disease. I 
lost both of my parents to Alzheimer's disease pretty close to the same 
time. Our family--my brother and my sister and I--helped to care for 
them. I understand the difficulties that caregivers and families have 
as they are trying to figure out how to face this difficult challenge 
because this disease is devastating, especially to the patients and 
their loved ones.
  My father passed away in January of 2015, just 1 day after I was 
sworn in as a U.S. Senator. My mother, Shelley, passed away just a few 
months beforehand, in September of 2014.
  There is not a book that has yet been written that can tell you what 
to do when a loved one is diagnosed because each case is different, and 
there is no magic formula, but I feel strongly that we can do much more 
to help our caregivers, to ease the pain of those who suffer from this 
disease, and, most importantly, to find a cure.
  The statistics surrounding Alzheimer's are staggering. Over 5 million 
Americans are living with the disease, and it is estimated that as many 
as 16 million will have the disease by 2050 if medical breakthroughs do 
not slow or, better yet, cure this disease.
  In my home State of West Virginia, over 38,000 West Virginians are 
currently living with the disease, and these are just the ones we know 
about. A lot of these cases go undiagnosed or are unreported.
  Across the country, nearly one in every three seniors who dies each 
year has Alzheimer's or another type of dementia. The cost of caring--
and this is not the emotional cost; this is the actual dollar cost--for 
those with Alzheimer's and other dementias is also notable--an 
estimated $277 billion in 2018, increasing to $1.1 trillion by the year 
2050.
  These numbers make it clear that we have much work we need to do for 
those living with the disease, for those caring for them, and for the 
many who face a future diagnosis.
  Over the past few months, I have taken some first steps to address 
needs facing each of these groups. Fortunately, this is not a task I am 
working on alone--as I said, almost everybody is touched by this 
disease--and I have great bipartisan partners to work with.
  Last month, I joined Senators Stabenow, Wicker, and Menendez to 
introduce the CHANGE Act. This bipartisan legislation encourages early 
assessment and diagnosis of Alzheimer's. It seeks to better utilize the 
``Welcome to Medicare'' initial exam and annual Medicare wellness 
visits to screen, detect, and diagnose Alzheimer's and related 
dementias in their earliest stages. It also establishes payment 
measures to incentivize detection, diagnosis, and discussion of 
appropriate care planning services, including the potential for 
clinical trial participation. Let's be honest. A conversation along 
these lines on this topic is very difficult.
  Early assessment and diagnosis offer the important possibility for 
the patient to be able to be involved in decisions regarding their own 
care--involve the people before they can no longer make that decision 
for themselves. I wish I had been able to do that. I tried, but I 
wasn't able to kind of get that answer that I was hoping for.
  That is a goal that Senators Stabenow, Collins, Markey, Menendez, and 
I had when we championed the HOPE for Alzheimer's Act back in the 114th 
Congress. It is a goal we achieved in 2016, when the Centers for 
Medicare and Medicaid Services announced that Medicare would begin to 
pay for an individual care plan for newly diagnosed Alzheimer's 
patients, effectively implementing our legislation.
  This new benefit went into effect in the year 2017. It encourages 
doctors to give a clear diagnosis to patients with Alzheimer's disease. 
That includes information about treatment options and what medical and 
community services are available.
  Here is the rub. Unfortunately, in 2017, less than 1 percent of 
seniors living with Alzheimer's actually received the care planning 
benefit that was created in the HOPE for Alzheimer's Act. So our 
bipartisan team regathered--as I mentioned, these are not easy 
conversations. They are not easy for families, and they are not easy 
for medical professionals. In late March, we introduced the Improving 
HOPE Act.
  This bill would require the Department of Health and Human Services 
to conduct outreach, to make sure our healthcare providers are aware of 
this important benefit, and to report back on rates of utilization and 
barriers we need to know about. Hopefully, this will help ensure more 
Alzheimer's patients and their families actually receive this benefit, 
as well as the information it is intended to provide.
  It is also important to remember that while many living with 
Alzheimer's are in their later years, like my parents were, there are 
also more than 200,000 Americans under the age of 65 who are living 
with Alzheimer's. I have met several who are in their early stages. It 
is a difficult disease at any time, but for a younger person, it is 
tremendously sad.
  These individuals and their families also need access to support 
services that most their age don't require and don't need. To make sure 
they have access, I recently joined Senators Collins, Casey, and Jones 
to introduce the Younger-Onset Alzheimer's Disease Act. This bill will 
amend the Older Americans Act to allow individuals under the age of 60, 
who are diagnosed with younger onset Alzheimer's disease, to access its 
support programs. Under current law, only those over the age of 60 are 
eligible for Older Americans Act programs, leaving Americans with 
younger onset Alzheimer's without access to vital programs and 
services. The Younger-Onset Alzheimer's Disease Act would address this 
disparity, and it would ensure that these individuals have access to 
things like nutritional services, supportive services, and respite care 
through the National Family Caregiver Support Program.
  Of course, it is also essential that we continue to work toward a 
cure for this heartbreaking disease. As a member of the Senate 
Appropriations Committee, I have worked with Labor, Health and Human 
Services Subcommittee Chairman Blunt and others to provide resources 
for crucial Alzheimer's research.
  In fact, with the passage of the Labor-H bill last year, we surpassed 
the $2 billion milestone when it comes to Alzheimer's research. That 
means we are making sure NIH has the funding it needs to continue its 
work and to help to support the work of others.
  I was recently very proud to welcome to West Virginia Dr. Marie 
Bernard. She is the Deputy Director of the National Institute on Aging 
at NIH. She came to West Virginia University, where we visited the 
Rockefeller Neuroscience Institute, which will be opening soon--
actually, I think in about 10 days.
  We spent the day learning more about the innovative and 
groundbreaking work being done there. Dr. Bernard shared with the 
Institutes' faculty students and staff the opportunities this increased 
funding can offer to this field of research at West Virginia 
University.
  It is easy to get discouraged when you hear about a once-promising 
clinical trial not moving forward--which

[[Page S2600]]

was the news just 2 weeks ago. They were moving forward with the 
clinical trial medication, and they had to stop the trial because they 
weren't getting satisfactory results--or when we learn that another 
person we know was diagnosed with the disease or when a cure really 
does seem so far away.
  Hearing the passion in Dr. Bernard's voice for the work she has 
dedicated her life to and seeing the excitement and hope in the eyes of 
the students who listened to her, the young researchers, well, that was 
proof to me that we are making progress and an illustration of the will 
and determination that exists to continue making process.
  I share that will and determination, and I will continue to work for 
the day when a patient and their families can more easily receive an 
early assessment and diagnosis, for the day when, following such a 
diagnosis, they routinely receive an individual care plan to help guide 
them, for the day when Alzheimer's patients of all ages are able to 
access the Older Americans Act support services but best yet, of 
course, the day when we can celebrate the first person cured of 
Alzheimer's disease.
  I think this is a mission for me in loving memory of both of my 
parents who fought hard through the diagnosis, but in the end, for 
those of you who have been exposed to this through your own families, 
it is a losing battle, a sad battle, a tough battle, and an emotionally 
and financially draining battle.
  I look forward to working with my colleagues to make all of this and 
so much more a reality of those living with Alzheimer's and those who 
care and love them.
  Thank you.
  I yield the floor.
  The PRESIDING OFFICER. The Senator from Maryland.