[Congressional Record (Bound Edition), Volume 157 (2011), Part 10]
[Senate]
[Pages 14766-14767]
[From the U.S. Government Publishing Office, www.gpo.gov]




                         SUBMITTED RESOLUTIONS

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    SENATE RESOLUTION 286--RECOGNIZING MAY 16, 2012, AS HEREDITARY 
 ANGIOEDEMA AWARENESS DAY AND EXPRESSING THE SENSE OF THE SENATE THAT 
   MORE RESEARCH AND TREATMENTS ARE NEEDED FOR HEREDITARY ANGIOEDEMA

  Mr. INOUYE (for himself and Mr. Chambliss) submitted the following 
resolution; which was referred to the Committee on the Judiciary.

                              S. Res. 286

       Whereas Hereditary Angioedema (HAE) is a rare and 
     potentially life-threatening genetic disease, affecting 
     between 1 in 10,000 and 1 in 50,000 people, leading to 
     patients being undiagnosed or misdiagnosed for many years;

[[Page 14767]]

       Whereas HAE is characterized by symptoms including episodes 
     of edema or swelling in various body parts including the 
     hands, feet, gastrointestinal tract, face, and airway;
       Whereas patients often experience swelling in the 
     intestinal wall, causing bouts of excruciating abdominal 
     pain, nausea, and vomiting, and swelling of the airway, which 
     can lead to death by asphyxiation;
       Whereas a defect in the gene that controls the C1-inhibitor 
     blood protein causes production of either inadequate or non-
     functioning C1-inhibitor protein, leading to an inability to 
     regulate complex biochemical interactions of blood-based 
     systems involved in disease fighting, inflammatory response, 
     and coagulation;
       Whereas HAE is an autosomal dominant disease, and 50 
     percent of patients with the disease inherited the defective 
     gene from a parent, while the other 50 percent developed a 
     spontaneous mutation of the C1-inhibitor gene at conception;
       Whereas HAE patients often experience their first HAE 
     attack during childhood or adolescence, and continue to 
     suffer from subsequent attacks for the duration of their 
     lives;
       Whereas HAE attacks can be triggered by infections, minor 
     injuries or dental procedures, emotional or mental stress, 
     and certain hormonal or blood medications;
       Whereas the onset or duration of an HAE attack can 
     negatively affect a person's physical, emotional, economic, 
     educational, and social well-being due to activity 
     limitations;
       Whereas the annual cost for treatment per patient can 
     exceed $500,000, causing a substantial economic burden;
       Whereas there is a significant need for increased and 
     normalized medical professional education regarding HAE; and
       Whereas there is also a significant need for further 
     research on HAE to improve diagnosis and treatment options 
     for patients; Now, therefore, be it
       Resolved, That--
       (1) the Senate--
       (A) recognizes and celebrates May 16, 2012, as Hereditary 
     Angioedema Awareness Day; and
       (B) supports increased awareness of Hereditary Angioedema 
     (HAE) by physicians and the public; and
       (2) it is the sense of the Senate that increased Federal 
     research on HAE is needed, including that--
       (A) the Director of the National Institutes of Health (NIH) 
     should take a leadership role in the search for new treatment 
     options and a cure for HAE by--
       (i) encouraging the National Institute of Allergy and 
     Infectious Diseases (NIAID) to implement the research 
     recommendations of the international HAE research community;
       (ii) exploring collaborative research opportunities between 
     the NIAID, the Office of Rare Diseases Research, and other 
     NIH Institutes and Centers; and
       (iii) encouraging NIAID to provide the necessary funding 
     for continued expansion and advancement of the HAE research 
     portfolio through intramural and extramural research; and
       (B) the Commissioner of Food and Drugs should take a 
     leadership role in ensuring new HAE treatments are developed 
     and appropriately monitored by--
       (i) issuing further guidance to industry on the development 
     criteria and adverse event standards for HAE treatments; and
       (ii) encouraging the participation of patient groups and 
     considering the views of patients when discussing standards 
     and protocols for the development and monitoring of HAE 
     treatments.

  Mr. INOUYE. Mr. President, I rise today to submit a resolution 
recognizing May 16, 2012, as Hereditary Angioedema, HAE, Awareness Day. 
HAE is a rare and potentially life threatening genetic disease which 
impacts between 1 in 10,000 and 1 in 50,000 Americans. HAE is 
characterized by severe swelling throughout the body, including the 
digestive tract and airways. The swelling caused by episodes of HAE is 
both very painful and can cause sufferers to asphyxiate when the 
swelling impacts the airways. To date there is only one Food and Drug 
Administration approved treatment for HAE, but this treatment is only 
effective in about a third of patients afflicted with this devastating 
disease. It is clearly evident that more research is needed to combat 
this terrible disease.
  On May 16, 2012, an international conference on HAE will be convened 
in Copenhagen, Denmark to discuss issues relating to HAE research, 
treatments, and awareness. The American component of this conference 
will be spearheaded by the U.S. Hereditary Angioedema Association, 
USHAEA, based in my home state of Hawaii. USHAEA is an organization 
that provides education, support, funding for research, and a voice to 
HAE patients, their families, healthcare providers and the general 
public at large. I urge my colleagues to support this important 
resolution and help find a cure for HAE.

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