[Congressional Record Volume 163, Number 177 (Wednesday, November 1, 2017)]
[House]
[Pages H8298-H8299]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                             DOWN SYNDROME

  The SPEAKER pro tempore. The Chair recognizes the gentlewoman from 
California (Ms. Roybal-Allard) for 5 minutes.
  Ms. ROYBAL-ALLARD. Mr. Speaker, last week, the Labor-HHS 
Appropriations Subcommittee had a most remarkable hearing on Down 
syndrome, which moved us to a new understanding of this disability.
  DS is a genetic disorder that affects over 300,000 men, women, and 
children in America. It is the most common chromosomal disorder and the 
most frequent genetic cause of learning disabilities in children.
  Each year, approximately 6,000 babies in the United States are born 
with Down syndrome, a condition resulting from an extra 21st 
chromosome. Sixty years ago, people with DS had a life expectancy of 
less than 20 years, and most lived their lives in institutions. Today, 
due to early medical care and being raised in loving homes, these 
children can expect to live well into their sixties.
  Last week's hearing was one of the most emotionally charged and 
inspirational hearings I can recall as a member of this subcommittee. 
The room was filled with children and adults with DS and their 
families, including my young constituent, Jose Cisneros. Amidst the 
tears, laughter, and applause, we heard inspiring stories about the 
amazing accomplishments of DS teens and young adults in sports, 
scouting, community activism, and film acting.
  We learned that they are graduating from high schools, attending 
colleges, and working at jobs in their communities.
  And, most importantly, we saw how these young Americans are teaching 
our country about the value of diversity and inclusion, while at the 
same time increasing the happiness quotients of those lucky enough to 
be in their very wide circle of friends.
  We also learned some very surprising and amazing facts about Down 
syndrome. Researchers told us that individuals with DS are medically 
very special. On the one hand, they are highly predisposed to 
autoimmune disorders such as thyroid disease and rheumatoid arthritis; 
children with DS are 50 times more likely to develop

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childhood leukemia, and virtually all adults with DS will develop the 
brain pathology of Alzheimer's by the age of 40.
  But they also said that due to a small difference in their genetic 
makeup, persons with Down syndrome are naturally protected from heart 
disease, high blood pressure, and most solid-tissue cancers. 
Researchers said studying these unique genetics could help discover 
ways to prevent or cure diseases such as cancer, autoimmune disorders, 
and Alzheimer's disease.
  With such promising potential, one would think the Federal Government 
would invest heavily in Down syndrome research. Unfortunately, what we 
learned was that over the last two decades, DS has been one of the 
least funded genetic conditions at the NIH.
  This hearing left no doubt about the need for a significant and 
sustained investment in Down syndrome research. A trans-NIH DS 
initiative could help not only find answers and cures for DS, but 
discover its mysteries, which could answer questions about other 
serious and life-threatening diseases.
  While the benefits of DS research are unquestionable, it will take 
time to realize its full potential. In the meantime, we must ensure 
those living with DS can access and afford high-quality, coordinated 
healthcare and the long-term services and support they need to live 
productive lives in their communities.
  Medicaid long-term supports and Medicaid community-based services 
gives them that opportunity by enabling them to maintain gainful 
employment and stay in their homes and in their communities. Sadly, 
across our country, thousands of people with Down syndrome are on very 
long waiting lists for those services.
  As lawmakers, we have an obligation to find a bipartisan way to 
protect and expand Medicaid services so all individuals with DS and 
other debilitating diseases have access to the lifelong interventions 
and support they need.
  The time has come for this country to embrace the gift and potential 
that Down syndrome brings to our society. The 300,000-plus Americans 
living with DS today want and deserve the same opportunities available 
to all of us: to live a full life and to reach their true potential.

                          ____________________