House panel asks sick patients for policy suggestions

The House Energy and Commerce Committee is enlisting sick patients to help guide a new, bipartisan effort to spur treatments and cures for disease.

In a memo Friday, the panel asked patients to answer 14 broad-based questions about their experience with the healthcare system, clinical trials and other disease research.


Lawmakers asked for information about cures and treatments currently on the horizon, as well as how Congress can "incentivize, coordinate and accelerate" research it knows little about.

The effort's unofficial slogan is: "There are 7,000 known diseases. We have treatments for only 500 of them. We have work to do."

"The involvement and guidance of those patients on the frontlines and their advocates is critical," the memo stated.

"Our goal of accelerating the cycle of discovery, development and delivery of promising new treatments and cures is shared by many, but perhaps most of all by patients and their families."

Patients were asked to submit answers by June 13.

The "21st Century Cures" initiative is led by Energy and Commerce Committee Chairman Fred Upton (R-Mich.) and Democratic Rep. Diana DeGette (D-Colo.), ranking member of the Oversight subcommittee.

It seeks collaboration with federal health officials, as well as academics, industry leaders and patients, to understand the challenge of finding new disease cures.