Congressional update Dec. 2015

Congress Increases NIH funding

House and Senate negotiators have completed work on funding bills for fiscal year 2016 (the “omnibus”). Congress should approve the bill by Dec. 23. President Obama is expected to sign it into law.

Under the omnibus, the National Institutes of Health (NIH) will receive just over $32 billion. This is a $2 billion increase. The PKD Foundation strongly urged Congress to accept this amount. Within NIH, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will get just under $2 billion. This is about $89 million above the FY15 level and $30 million above the budget request.

The Food and Drug Administration (FDA) will receive nearly $4.7 billion from appropriations and user fees. This is $200 million less than the budget request but about $150 million more than the original House and Senate bills.

It is expected that the House will vote on Friday, Dec. 18th and the Senate will vote shortly thereafter. It is also expected that if passed, the President will sign the Omnibus package.

Senate 21st Century Cures draft delayed

At the time of this writing [10am ET, Dec 16], the HELP Committee has not released its 21st Century Cures proposal. A number of issues need to be resolved before a bipartisan Senate bill can be introduced. The issues include laboratory diagnostic tests (LDT), communications about off-label use of approved medicines, the sharing of pertinent health information (interoperability), drug pricing, and whether and how NIH will get mandatory funds for increased research.

The PKD Foundation and other rare disease advocates are disappointed that Congress could not complete work in 2015 on 21st Century Cures with guaranteed mandatory funding. We will review the Senate proposal, once it is made public, and will advise our advocates of how we will deal with the issue in 2016.