[Congressional Record (Bound Edition), Volume 162 (2016), Part 3]
[Senate]
[Page 3437]
[From the U.S. Government Publishing Office, www.gpo.gov]




                   BLEEDING DISORDERS AWARENESS MONTH

  Mr. SULLIVAN. Mr. President, today is St. Patrick's Day. It is a 
great day for those of us in this country whose ancestors came here to 
find a better life. And today, like many of us here, I got up and put 
on a green tie, but I switched it out for this one, a red one, to 
highlight support for those who suffer from serious conditions that 
many Americans don't speak much about or know much about.
  This March is the first Bleeding Disorders Awareness Month. It also 
marks the 30th anniversary of President Ronald Reagan's one-time 
declaration of March as Hemophilia Awareness Month.
  Tens of thousands of Americans have been diagnosed with bleeding 
disorders, including more than 100 Alaskan families. These families are 
spread all across my State, in Anchorage and Fairbanks, but also in 
rural communities like Chevak, Elim, Tuntutuliak, Kodiak, and Klawock. 
These Alaskans face serious health challenges with strength and grace 
and form a vibrant tight-knit community, and I want to thank those 
communities for supporting their fellow Alaskans.
  Hemophilia is the most expensive chronic condition to treat. There 
are Alaskan children whose daily dose of medication exceeds $1,800 per 
day. The good news is there is treatment that continues to improve.
  I want to highlight the work done by the Alaska Hemophilia 
Association, a chapter of the National Hemophilia Foundation, which 
provides services and support for the Alaskan bleeding disorder 
community. They work to provide access to care and insurance and 
support our youth by hosting an annual summer camp for Alaskan children 
with bleeding disorders and their siblings. Camp Frozen Chosen allows 
these youth to interact with others with similar bleeding disorders. 
They are also able to learn to manage and take ownership of their 
condition and their lives, enabling them to be leaders of their 
generation.
  The Alaska Hemophilia Association and the Alaska bleeding disorder 
community are the epitome of Alaskan grit and determination and are 
part of what makes Alaska such a wonderful place.
  I would ask that we think of those this month who are suffering from 
these disorders and that we continue to work together to find solutions 
and to offer support.

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