NEVER doubt that your voice as a rare disease advocate matters! President Obama just signed the 21st Century Cures Act into law, after it passed both the House and Senate with broad bipartisan support. This would not have been possible without advocates from EveryLife Foundation for Rare Diseases, Global Genes, National Organization for Rare Disorders, […]
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Following the Senate’s passage of the 21st Century Cures Act on Wednesday by a vote of 94 to 5, the bill was sent today to Speaker Paul Ryan (R-WI) before moving to the White House for the president’s signature. The House passed the game-changing medical innovation bill on November 30, by a vote of 392 to 26.
As we head into a crucial juncture for the development of rare disease treatments, our advocacy efforts will play a central role ensuring the progress made by our community continues.
The EveryLife Foundation for Rare Diseases is asking patient organizations to sign-on in support of the OPEN ACT, legislation that could help double the number of treatments for rare diseases.
The revised measure is expected to have an easier path in the Senate this time, according to lobbyists and aides. The White House on Tuesday said it “strongly supports” the bill. Senate Health, Education, Labor and Pensions Chairman Lamar Alexander of Tennessee said the chamber would vote on the package early next week.
More than 200 patient and research associations representing individuals affected by a broad range of diseases and disabilities sent a letter to Congressional leadership today, calling on them to pass the 21st Century Cures Act during the lame duck session.
The session may be consumed by arguments over federal budgeting. But if there is time for anything else, Mr. McConnell may push the 21st Century Cures Act, a bipartisan effort that has taken years to get close to passing. Congress should nudge it across the finish line — taking care to repair a few problems along the way.
Throughout the campaign, President-Elect Donald Trump’s entire health message consisted of promising to repeal the Affordable Care Act.
That remains difficult with Democrats still commanding enough power in the Senate to block the 60 votes needed for a full repeal. Republicans could use fast-track budget authority to make some major changes to the law, although that could take some time. In the short term, however, Trump could use executive power to make some major changes on his own.
The National Health Council is circulating a sign-on letter to Congressional leadership to urge passage of the 21st Century Cures Act by the end of 2016. As we near the end of the year, it is imperative that the tireless work by Congress and the patient community does not go to waste by delaying action until the next Congress in 2017.
Rep. Gene Green, the top Democrat on the House Energy and Commerce health subcommittee, told The Hill that a new version of the 21st Century Cures bill will allocate about $4 billion over five years for research at the National Institutes of Health (NIH), down from the original $8.75 billion.