IV 

115TH CONGRESS 

2D SESSION H. RES. 1154 

Affirming the importance of the Orphan Drug Act, applauding its lifesaving 

contributions over its 35-year history, and recognizing the need to continue supporting research and development for rare diseases. 

IN THE HOUSE OF REPRESENTATIVES 

NOVEMBER 16, 2018 

Mr. LANCE (for himself, Mr. BUTTERFIELD, and Ms. ESHOO) submitted the 

following resolution; which was referred to the Committee on Energy and 

Commerce 

RESOLUTION 

Affirming the importance of the Orphan Drug Act, applauding its lifesaving contributions over its 35-year history, 

and recognizing the need to continue supporting research 

and development for rare diseases. 

Whereas 30,000,000 people in the United States, or nearly 

1 out of every 10 Americans, lives with at least 1 of more 

than 7,000 known rare diseases; 

Whereas the Orphan Drug Act of 1983 (Orphan Drug Act) 

was enacted to provide research and development incentives to encourage the development of new therapies for 

diseases affecting fewer than 200,000 people in the 

United States; 


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•HRES 1154 IH 

Whereas in the 10 years prior to enactment of the Orphan 

Drug Act, only 10 therapies for rare diseases were developed by private industry and approved for patients; 

Whereas since enactment of the Orphan Drug Act, research 

and development of therapies addressing rare diseases 

has resulted in more than 650 new therapies for rare diseases; 

Whereas experts estimate that without the Orphan Drug Tax 

Credit, one of the Orphan Drug Act’s incentives, at least 

a third of the new treatments would likely not have been 

developed; 

Whereas the Orphan Drug Act continues to result in increased research and successful therapeutic development 

along the full range of rare diseases, including the rarest 

diseases; 

Whereas people with rare diseases benefit from new orphan 

drugs through longer and higher quality of life; 

Whereas society benefits from new orphan drugs through increased productivity from those affected as well as a potential decline in the resources devoted to health care, 

disability, caregiving, and related spending; 

Whereas despite the success of the Orphan Drug Act, only 

approximately 5 percent of the more than 7,000 identified rare diseases have at least one FDA-approved treatment option; and 

Whereas the significant, lifesaving accomplishments of the 

Orphan Drug Act over the course of its 35 years should 

be recognized: Now, therefore, be it 

1 Resolved, That the House of Representatives— 


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•HRES 1154 IH 

1 (1) applauds the tremendous growth in research 

2 and development into new therapies for rare diseases 

3 and the resulting number of FDA-approved thera4 pies for people living with rare diseases; 

5 (2) recognizes that significant research and de6 velopment efforts and related investments are need7 ed to develop therapies to treat and cure the thou8 sands of rare diseases for which no treatment op9 tions are currently available; and 

10 (3) affirms the need to continue supporting 

11 public and encouraging private investment in re12 search and development of new treatments for rare 

13 diseases. 

Æ 


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