III 

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, nauVerDate Mar 15 2010 23:48 Oct 05, 2011 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6300 E:\BILLS\SR286.IS SR286

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•SRES 286 IS 

sea, 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 bloodbased 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 


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•SRES 286 IS 

1 Resolved, That— 

2 (1) the Senate— 

3 (A) recognizes and celebrates May 16, 

4 2012, as Hereditary Angioedema Awareness 

5 Day; and 

6 (B) supports increased awareness of He7 reditary Angioedema (HAE) by physicians and 

8 the public; and 

9 (2) it is the sense of the Senate that increased 

10 Federal research on HAE is needed, including 

11 that— 

12 (A) the Director of the National Institutes 

13 of Health (NIH) should take a leadership role 

14 in the search for new treatment options and a 

15 cure for HAE by— 

16 (i) encouraging the National Institute 

17 of Allergy and Infectious Diseases 

18 (NIAID) to implement the research rec19 ommendations of the international HAE 

20 research community; 

21 (ii) exploring collaborative research 

22 opportunities between the NIAID, the Of23 fice of Rare Diseases Research, and other 

24 NIH Institutes and Centers; and 


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•SRES 286 IS 

1 (iii) encouraging NIAID to provide 

2 the necessary funding for continued expan3 sion and advancement of the HAE re4 search portfolio through intramural and 

5 extramural research; and 

6 (B) the Commissioner of Food and Drugs 

7 should take a leadership role in ensuring new 

8 HAE treatments are developed and appro9 priately monitored by— 

10 (i) issuing further guidance to indus11 try on the development criteria and ad12 verse event standards for HAE treatments; 

13 and 

14 (ii) encouraging the participation of 

15 patient groups and considering the views of 

16 patients when discussing standards and 

17 protocols for the development and moni18 toring of HAE treatments. 

Æ 


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