Providing a united voice

for people with

chronic diseases and disabilities

 
Home
About Us
Sign Petition
Make A Donation
Get Involved
Members Only
Contact Us

Moddern Cures Act

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 and ask them to cosponsor HR 3497. Help patients with chronic diseases and disabilities get the treatments they need.

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

Know the Facts

Alpha-1 Foundation: An estimated 19 million people have one normal and one defective alpha-1 antitrypsin gene. Alpha-1 is often misdiagnosed as asthma or smoking-related chronic obstructive pulmonary disease.

ALS Association: At the time of Lou Gehrig’s death, there was no cure for ALS. Sadly, that remains the case today.

Alzheimer’s Association: Because new drugs take years to produce from concept to market—and because drugs that seem promising in early-stage studies may not work as hoped in large-scale trials—it is critical that Alzheimer's research continue to accelerate.

Epilepsy Foundation: Epilepsy and seizures affect nearly 3 million Americans of all ages, at an estimated annual cost of $17.6 billion in direct and indirect costs. Approximately 200,000 new cases of seizures and epilepsy occur each year.

Lupus Foundation: At least 1.5 million Americans have lupus. It can take months, and sometimes years, before a health care team can find the right combination of medicines to keep a person’s lupus symptoms under control.

Mesothelioma Applied Research Foundation: Each year, according to mesothelioma facts and statistics, approximately 3,000 or more Americans develop this malignant tumor that—after a latency period of ten to fifty years—aggressively invades the linings of the lungs, abdomen, heart or testicles.

National Multiple Sclerosis Society: Multiple sclerosis is a typically progressive disease for which no cure has yet been found. Although there are treatments to manage the disease course, they are only partially effective, which means that some people’s MS will worsen in spite of everything they and their doctors do to try and prevent it.

Learn More

05-04-12- The NHC applauds the National Institutes of Health’s new initiative Discovering New Therapeutic Uses for Existing Molecules, intended to 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 Congressional Briefing on MODDERN Cures Act. Read the briefing handouts and view the NHC Slides.

01-26-12- MODDERN Cures Act aims to speed treatment approval – Asbury Park Press

01-26-12- Congressman Lance talks about MODDERN Cures Act in Westfield - NJ.com

01-11-12- NHC letter to Representatives Lance and Representative Inslee in support of the MODDERN Cures Act - Read the letter.

01-03-12— Article titled, "Innovation, Not Spending Cuts, Improves Health Care." Includes mention of the MODDERN Cures Act — Investor's Business Daily

11-18-11- H.R. 3497: A bill to promote the development of meaningful treatments for patients, also known as the MODDERN Cures Act, introduced by Representative Leonard Lance - Read the news release.

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

06-15-11— Comments by NHC Executive Vice President and COO Marc Boutin in article on the MODDERN Cures Solution - FDA Week (Subscription Required)

05-30-11— BioCentury featured NHC EVP & COO Marc Boutin discussing the MODDERN Cures solution on its weekly television program and in its trade publication — BioCentury

05-30-11— Interview with NHC EVP & COO Marc Boutin on the MODDERN Cures Solution in The Pink Sheet (Subscription Required)