CJG Blog

Center for Jewish Genetics blog

OPEN ACT Reintroduced In The House

 Permanent link

On Tuesday, December 13, 2016, the president signed the 21st Century Cures Act into law, after more than a year of bipartisan negotiations. This bill provides new money for the National Institutes of Health and additional funds for the FDA. It includes provisions for speeding up the approval of new drugs and establishing a new assistant secretary for mental health in the Department of Health and Human Services, as well as a chief medical officer. The bill also authorizes grants for areas such as suicide prevention, and seeks to improve the enforcement of "parity" rules that require insurance companies to cover mental health services to the same degree that they cover physical health services.  

Unfortunately, the final version of 21st Century Cures left out one of the key bipartisan provisions that would have brought needed treatments for the 30 million Americans with a rare disease. The Orphan Products Extensions Now, Accelerating Cures and Treatments (OPEN ACT; HR 971/S 1421) was endorsed by 173 national patient organizations and was included in the House-passed version of the 21st Century Cures Act, but was dropped from the final bill. The OPEN ACT would provide an incentive for companies to repurpose existing drugs for rare disease indications, which is substantially faster and more cost-efficient than traditional drug development. This legislation is critical to accelerating the drug development process and helping ensure the translation of new research into life-saving treatments for patients. The updated draft of 21st Century Cures is a missed opportunity to save and substantially improve the lives of patients with rare diseases. [1]

On February 27, the OPEN ACT was reintroduced in the House of Representatives as H.R. 1223 by Representatives Bilirakis (R – FL) and Butterfield (D – NC).  Several other representatives have also signed on as co-sponsors. Senators Hatch (R – UT) and Klobuchar (D – MN) plan to introduce companion legislation shortly.  According to the EveryLife Foundation, "Congress should incentivize the repurposing of potentially life-saving drugs for rare diseases and pediatric cancers. Similar incentives have been critical in the development of new medicines for underserved patient populations and could lead to hundreds of safe, effective and affordable rare disease treatments within the next five years." [2]

More information about the OPEN ACT and instructions to sign-on in support of the bill are available on the OPEN ACT webpage: http://everylifefoundation.org/open-act/

[1] Sullivan, Peter, thehill.com/policy/healthcare/310223-obama-signs-medical-cures-bill-into-law, 12/13/16

[2] http://everylifefoundation.org/open-act-reintroduced-u-s-house-representatives-hr-1223/


Affordable, Accessible Genetic Screening in Illinois

Our affordable, accessible carrier screening program uses advanced technology to provide comprehensive screening for Jewish and interfaith couples. Visit our Get Screened page to learn more and register.


Planning for a Family?

1 in 4 Jews carries a potentially devastating genetic disorder that could pass down to a child. Make carrier screening part of your family planning process. 


Do You Know What's In Your Genes?

What is the most valuable gift you can give to your family? The gift of good health! There are many health conditions that run in families. Knowing your family health history can alert you to the potential risk for a variety of genetic disorders . Talk to your relatives for warning signs and assess your risk for hereditary cancers.

Did you know: Ashkenazi Jews are 10 TIMES more likely to have BRCA mutations, which significantly increases lifetime risks for hereditary cancers, so what does this heightened risk mean for you? Click here to learn more .