Lawmaker joins noted rare disease advocates in effort

WASHINGTON, D.C.– Congressman Leonard Lance (NJ 07) today announced he has reintroduced legislation that seeks to promote the development of meaningful treatments for patients with chronic and rare diseases.

The bipartisan “Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network (MODDERN) Cures Act” would update the Nation’s drug evaluation process to encourage the discovery and development of new treatments for chronic and rare diseases. The measure would provide a pathway to bring promising new compounds to market and establish a predictable timeline for the introduction of generic equivalents. In addition, it will advance creative solutions for developing companion diagnostic tests and create a system that rewards efficiency and effectiveness to the benefit of all people with chronic diseases.

“Developing new medicines is a complicated, time-consuming and expensive process where the costs can often outweigh the rewards for bringing such drugs to market,” said Lance, the chief author of the legislation and chairman of the Congressional Rare Disease Caucus. “And in a time of increasingly scarce federal resources, it is critical that health research funds are spent most effectively to meet the needs of patients. The MODDERN Cures Act will help encourage the rapid development of new, safe and effective medicines to help as many people as possible.”

Specifically the MODDERN Cures Act would encourage the development of drugs abandoned in the development process by creating a new category of drugs known as dormant therapies for compounds with insufficient patent protection that offer the promise to treat conditions with unmet medical needs.

Updating the innovation ecosystem would help open the pipeline for new therapies and would help patients with degenerative conditions (such as Alzheimer’s, ALS, and Parkinson’s), autoimmune diseases (such as lupus and Sjögren’s Syndrome), and cancer.

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 his children.

“The MODDERN Cures Act aims to introduce new medicines and remove barriers to treatment for more than 30 million persons in the U.S. afflicted with one of the 7,000 rare disorders,” said Crowley. “We are grateful to Leonard Lance for reintroducing this important legislation and for his untiring support for the families in the rare diseases community.”

Lance noted the bill was developed in concert with the National Health Council (NHC), the only organization to provide a united voice for people living with chronic diseases and disabilities and their family caregivers.

Myrl Weinberg, FASAE, CAE, Chief Executive Officer of the NHC, applauded the reintroduction of “this game-changing legislation.” She said, “The patient advocacy community eagerly supports the MODDERN Cures Act. The treatments and diagnostics created in response to this bill will vastly improve the lives of people who seek medical advancements to help them to live longer and feel better.”

“The bipartisan MODDERN Cures Act will change the status quo by promoting the development of meaningful cures to the rarest diseases that have few or no options by removing outdated barriers and creating new invention and innovation opportunities. And that’s good news for patients and their families,” concluded Lance.