Providing a united voice

for people with

chronic diseases and disabilities

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American People



More than 133 million Americans – over 40% of the U.S. population – live with a long-term disease or disability. But for some people there are no treatments and there are no cures. Most treatments that do exist work only for 50 to 75 percent of the patients who currently use them. Only 1% of marketed drugs have a companion diagnostic test to determine which patients would benefit from a specific treatment.


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. 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.
  • Giving patients quicker access to new diagnostic tests once they are approved by the Food and Drug Administration. Everyone deserves the chance at a better quality of life.


Each year 1.7 million people die from chronic conditions. Together we can ensure that limited health care research dollars are spent most effectively to meet the needs of patients.

Add your voice to ours and join the National Health Council in asking Congress to support the MODDERN Cures Act. Write to your U.S. Representative and Senators. Help patients with chronic diseases and disabilities get the treatments they need.

Read about real people living with alopecia areata, Alpha-1, ALS, Alzheimer’s, epilepsy, lupus, mesothelioma, and multiple sclerosis who will benefit from the MODDERN Cures Act.

Learn More

An interview with Congressman Lance, lead sponsor of the MODDERN Cures Act. - Plasma Protein Therapeutics Association


In June 2014, 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


Read the Bill - H.R. 3116

Read a two-page summary of the MODDERN Cures Act.

View a March 2013 interview on BioCentury TV with NHC Chief Executive Officer Myrl Weinberg about the MODDERN Cures Act.

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

05-04-12 — The NHC applauds the National Institutes of Health’s new initiative, Discovering New Therapeutic Uses for Existing Molecules, which will spur therapeutic development. This agreement complements the objectives of the MODDERN Cures Act. Read the news release

03-05-12 — Bringing attention to rare diseases that currently have no approved therapies. — Observer Tribune

03-05-12 — Parents of Reno twins with rare disease fight for FDA approval of treatment. — Reno Gazette-Journal

02-28-12 — NHC holds 2012 Congressional Briefing on MODDERN Cures Act. Read the briefing handouts and view the NHC Slides

02-14-12  — MODDERN Cures Act letter of support sent to Representative Leonard Lance of New Jersey, who introduced the legislation, and cosponsor Representative Jay Inslee of Washington State. The letter is signed by the NHC and 48 individual organizations.

01-03-12 — Article titled, “Innovation, Not Spending Cuts, Improves Health Care.” — Investor’s Business Daily

08-01-11 — NHC President Myrl Weinberg commentary on the MODDERN Cures Act. - American Journal of Pharmacy Benefits