Rare Disease Champion John Crowley; Patients and Advocates Support Lance Bill

WESTFIELD, NJ -- Congressman Leonard Lance (NJ-07) today held a news conference to discuss legislation he has introduced that seeks to promote the development of meaningful treatments for patients with chronic or rare diseases. During the event, New Jersey patients and advocates of chronic diseases – including ALS, alzheimers, mesothelioma, osteoporosis, Easter Seals and others – voiced their support for Lance’s legislation.

“In an era of increasingly scarce resources for health research, it is critical to ensure that outdated barriers in the regulatory system are removed and limited dollars are spent most effectively to meet the needs of patients,” said Lance during the event.  “The status quo is not yielding treatments needed to address the growing epidemic of chronic disease. That is why it is vital that we update the regulatory system by removing the barriers to invention and provide greater predictability in the search for therapies for unmet medical needs.”

John Crowley, the chairman and chief executive officer of Amicus Therapeutics and nationally recognized rare disease advocate, also participated in the event. Crowley served as the inspiration for the 2010 motion picture, “Extraordinary Measures.”  The movie, which stars Harrison Ford and Brendan Fraser, chronicles Crowley’s decade-long search to find a cure for a rare illness afflicting two of their children.

“The MODDERN Cures Act is welcomed news for the rare disease community in the U.S. – a community representing more than 30 million persons afflicted with one of the 7,000 rare disorders,” John Crowley said.  “We are particularly pleased to have Leonard Lance as the leader of this legislation, whose commitment and passion on the issues important to the rare diseases community help advance cures and treatments for some of the most vulnerable citizens our society – citizens that we all know as our moms, dads, children and neighbors.”

The “Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network (MODDERN) Cures Act” would modernize our Nation’s drug and diagnostics evaluation and regulatory network by encouraging the discovery and development of new treatments for the many diseases that have few or no options. It would also create a system that rewards efficiency and effectiveness to the benefit of all people with chronic diseases. 

Dorine Gordon, President & CEO of The ALS Association Greater New York Chapter stated, “We are highly encouraged by this bill and what it will mean to so many people impacted with ALS.  Those diagnosed with Lou Gehrig’s Disease on average die within two to five years.  The MODDERN Cures Act provides hope that an effective treatment and ultimately a cure for ALS is even closer than before.  This bill will help break down barriers to scientific research and harness greater innovations in the lab.  The ALS Association Greater New York Chapter is grateful to Congressman Lance for his dedication to the health and well-being his constituents and to the American people.”

Lance noted the bill was developed in concert with the National Health Council, an organization that provides a united voice for people with chronic diseases and disabilities and their family caregivers.

“More than 133 million Americans – over 40 percent of the people in this country – have at least one chronic disease or disability,” said Eric Gasho with the National Health Council. “Despite the roughly $80 billion spent annually on medical research and development, many conditions lack effective treatments. This bill will advance personalized medicine by getting the right medicines to the right people. It will ensure that science, not patent law, drives the development of new therapies.”

 

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