[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 286 Introduced in Senate (IS)]

112th CONGRESS
  1st Session
S. RES. 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.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                            October 5, 2011

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

_______________________________________________________________________

                               RESOLUTION


 
 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.

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;
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.
                                 <all>