Congressman Leonard Lance

Representing the 7th District of New Jersey

Lance and DeGette Team Up to Improve Clinical Trials

May 2, 2017
Press Release

WASHINGTON, D.C. --- U.S. Representatives Leonard Lance (NJ-07) and Diana DeGette (CO-01) have introduced bipartisan legislation called the Patient Experience in Research Act of 2017 (PERA) in the U.S. House of Representatives.  PERA will launch a pilot project to evaluate the psychological and social distress experienced by patients participating in a clinical trial of a drug or biological product that is intended to treat a serious or life-threatening disease or condition. 

A difficult diagnosis can take its toll on a patient.  Information about the patient experience, including the challenges that come with a diagnosis, is needed to help improve the clinical trial process.  Many patients are counting on the research and the products that are being developed in promising clinical trials.  I am proud to introduce this bipartisan bill with my colleague Representative DeGette to help measure additional factors so patients and their caregivers have the best research,” said Lance, a member of the Energy and Commerce Health Subcommittee.         

“I’m pleased to introduce the Patient Experience in Research Act with Congressman Lance," DeGette said.  “Like all patients, people participating in clinical trials often experience psychological distress related to their conditions.  The Patient Experience in Research Act will help ensure that patients stay with clinical trials by testing ways to offer support to those who need it.  Robust clinical trial participation is essential to advancing biomedical research. By closing current gaps in care for patients taking part in trials, we can both improve health outcomes and enhance the clinical trial itself.” 

The Cancer Support Community (CSC), an international nonprofit organization, also announced its support for the bipartisan legislation.  “CSC applauds the vision and leadership to introduce this transformative bill,” said Kim Thiboldeaux, CEO of the Cancer Support Community. “Collecting information about the patient experience as a seamless and important part of clinical research will not only ensure that valuable information is shared in a new and meaningful way, intervening early on identified patient needs ensures adherence to standard of care and may improve patient outcome.”

For cancer patients, clinical trials provide access to new cutting-edge therapies; often the next generation of treatment. This can be a new drug, a combination of drugs, or a different way of using established therapies. There are clinical trials for every type of cancer.

However, according to CSC’s Access to Care in Cancer 2016: Barriers and Challenges report, over 53% of surveyed cancer patients did not receive social and emotional support services, including screening for distress as part of their cancer care. This suggests a disparity between access to medical care and access to psychosocial care. Psychosocial distress screening and support is a fundamental element of comprehensive cancer care.

Rep. Lance was honored by the CSC’s Cancer Policy Institute with the Public Policy Award for Research in 2013 for his commitment to health and cancer care issues.  Rep. DeGette was one of the two original authors of the bipartisan 21st Century Cures Act, which allocated $1.8 billion in cancer research funding when it became law in December.