Title: 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.
Policy area: Health

Summary:
Applauds the growth in research and development into new therapies for rare diseases and the resulting number of FDA-approved therapies for those living with rare diseases, and affirms the need to continue supporting such research and development.
Recognizes that significant research and development efforts and related investments are needed to develop therapies to treat and cure thousands of rare diseases for which no treatment options are currently available.

[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1154 Introduced in House (IH)]

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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;
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
    Resolved, That the House of Representatives--
            (1) applauds the tremendous growth in research and 
        development into new therapies for rare diseases and the 
        resulting number of FDA-approved therapies for people living 
        with rare diseases;
            (2) recognizes that significant research and development 
        efforts and related investments are needed to develop therapies 
        to treat and cure the thousands of rare diseases for which no 
        treatment options are currently available; and
            (3) affirms the need to continue supporting public and 
        encouraging private investment in research and development of 
        new treatments for rare diseases.
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