Most treatments don’t work for 25 to 50 percent of the patients who use them. For some people there are no treatments and there are no cures.Together we can ensure that limited health care research dollars are spent most effectively to meet the needs of patients
NHC CEO Myrl Weinberg (center) at a press conference
with Representative Leonard Lance (left) and Amicus
Therapeutics Chairman and CEO John Crowley.
How Can We Change This?
The National Health Council is leading patient advocacy organization support for legislation that focuses on Modernizing Our Drug & Diagnostics Evaluation and Regulatory Network. We call it the MODDERN Cures Act (H.R. 3116). This initiative will speed up the development of new and better treatments for patients with chronic diseases and disabilities by
Encouraging the development of drugs to treat conditions with few or no medical options. Science, not the law, must drive the development of new therapies.
Increasing the number of tools that can predict which patients will receive the most benefit from particular medicines. What works for you might not work for me.
Two elements of the MODDERN Cures Act have already been approved by Congress and signed into law. Section 216 of HR 4302: the Protecting Access to Medicare Act of 2014 will
Get advanced diagnostic tests to patients more quickly. It creates a temporary Healthcare Common Procedure Coding System (HCPCS) code that can be assigned to newly approved advanced diagnostics, giving patients immediate access to these diagnostic tests.
Promote high-valued advanced diagnostics that truly personalize care for patients. It creates an expert advisory panel designed to use a thorough approach to determine the payment rate for diagnostics, taking into consideration factors that reflect a more accurate value of the test, such as the improvement of patient care.
We now need to get the rest of MODDERN approved.
Add your voice to ours and join the National Health Council in asking Congress to support the MODDERN Cures Act. Contact your U.S. Representative and Senators. Help patients with chronic diseases and disabilities get the treatments they need.
Read the Bill - H.R. 3116
Read a two-page summary of the MODDERN Cures Act.
8-4-14 - Part 2 of a two-part blog on the MODDERN Cures Act.
7-31-14 - Part 1 of a two-part blog on the MODDERN Cures Act featured on RxObserver.com.
6-11-14 - The National Health Council calls for Congress to pass the MODDERN Cures Act.
6-11-14 - NHC Executive Vice President and Chief Executivve Officer Marc Boutin testified before the Energy and Commercy Health Subcommittee about the MODDERN Cures Act and how to advance the development of treatments and cures for people with unmet medical needs. To read his testimony, please click here.
6-11-14 - Read more about the June 2014 Subcommittee hearing and the 21st Century Cures initiative.
3-17-13 – View an interview on BioCentury TV with NHC Chief Executive Officer Myrl Weinberg about the MODDERN Cures Act.
8-25-14 – Lawmakers continue to press for medical innovation reforms, such as the MODDERN Cures Act. Read the article in Inside Health Policy. (Subscription required)
10-01-12 — Article on H.R. 6446, a bill introduced in the last Congress, aimed to create incentives for innovative diagnostics by improving the process for determining Medicare payment rates for new tests. — GenomeWeb
08-6-12 — Here. Us. Now. Video trailer on Chris and Hugh Hempel, a couple who started their own biotech company to conduct a clinical trials for a rare disease that their twin daughters have, Niemann-Pick Type C. Includes commentary from NHC Executive Vice President and Chief Operating Officer Marc Boutin. — Watch the Trailer
06-15-12 — Article on Chris and Hugh Hempel and their fight to find a cure for their daughters. — Good Housekeeping