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© ALS Independence 2003-11
Thursday, January 26, 2012
By Suburban News
WESTFIELD
Congressman Leonard Lance (NJ-7) today, Jan. 26, 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, Alzheimer's, 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to ensure that outdated barriers in the regulatory system are removed and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.”
"There is a difference between being honest and telling the truth." Vikki Kumar
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© ALS Independence 2003-11