Cures Act Vote is Likely After November Elections

Campaign for Cures

The Campaign for Cures Election 2016 blog features news, analysis, commentary and data about the presidential candidates and congressional races in key states on issues relevant to medical progress. Janice Lloyd, former USA Today senior editor and health reporter, manages The Campaign for Cures blog. You can reach Janice at campaignforcures@gmail.com.   Follow Campaign for Cures, a national voter education initiative, on Twitter and Facebook and visit www.campaignforcures.org

Cures Act Vote is Likely After November Elections

By: 
Janice Lloyd

During the lame-duck session after the November elections, Congress is expected to take action on a slimmed down version of the 21st Century Cures legislation.

Among the remaining obstacles, the biggest one is coming up with funding for the bill, designed to create a special fund for the National Institutes of Health (NIH) and to ease drug approval by the U.S. Food and Drug Administration (FDA). When it was approved by the House in 2015, Cures increased NIH and FDA funding by $9.3 billion over five years. The current version includes about $4 billion.

Both Senate Majority Leader Mitch McConnell (R., Ky.) and House Speaker Paul Ryan (R., Wis.) put it on the agenda for the lame-duck session, suggesting the slimmed-down version has a strong chance of advancing.

Mr. McConnell said the bill “could end up being the most significant piece of legislation we pass in the whole Congress.”

Senate health committee leaders, Sens. Lamar Alexander (R-Tenn.) and Patty Murray (D-Wash.), released a statement saying they’re committed to getting a result this year that will lead to lifesaving medical breakthroughs and advance President Obama’s Precision Medicine Initiative and Cancer Moonshot.

Whether they’re battling cancer, Alzheimer’s disease or a rare illness, patients across the country are hoping for a good outcome.  In Rome, N.Y., families who have children with rare diseases told Time Warner Cable News passing the bill is long overdue. "We need to have research and funding for these rare diseases that affect men, women, children and their families every day," said Cassandra Frusco, mother of a child with Dravet Syndrome, a rare form of epilepsy. Her longest seizure went on for an hour and half.

Frusco is urging people to reach out to their Senators to pass the bill. Many other patients and advocates are turning to Twitter and using #CuresNow.

Shira Strongin of Orange County, Calif., founded a group called Sick Chicks for young women with rare chronic illnesses that have no cures. She has Ehlers-Danlos Syndrome (EDS), a name for a spectrum of connective tissue disorders that affect the whole body. Last week she tweeted about her group Sick Chicks “all three of us are under 18 and living on borrowed time, but there are better treatment options out there. We need #CuresNow.”

One of Ryan’s tweets last week included this message: “There are 10,000 known diseases. 7,000 are considered rare. We only have treatments for 500.”

An overwhelming majority (74%) of Americans say Congress should pass legislation to increase the pace of medical progress, according to a national survey commissioned by Research America.

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Presidential Candidates Should Participate in Debate on Science

 
Source: A Research!America and ScienceDebate.org poll of U.S. adults conducted in partnership with Zogby Analytics in September 2015.

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