For patients who have exhausted all other forms of treatment, participation in clinical trials are their best, and sometimes only, option for survival. However, some private health plans do not provide coverage of routine patient costs for clinical trial participants.
Policy: Ensure that all health plans, regardless of being under state or federal jurisdiction, provide coverage of routine patient costs for items and services furnished in connection with participation in approved clinical trials, and to prohibit discrimination against patients on the basis of their participation in clinical trials.
Positioning: National Coalition for Cancer Research, a 501 (c)(3) nonprofit affiliation of 23 national cancer organizations, led an effort to establish a working group with more than 100 other scientific, consumer, academic and patient organizations with the objective of enacting legislation to require health plans to cover routine patient costs that would normally be covered for patients participating in high-quality clinical trials.
Pursuit: Established a collaborative process to ensure maximum communication among participating organizations, including uniform messaging and coordination of efforts. Conducted numerous Congressional briefings, created teams of advocates to conduct meetings with Members of Congress and Congressional committees. Engaged grassroots campaigns for advocates throughout the country to contact their Members to support passage of clinical trials coverage legislation. Media campaign through earned media and op-ed articles in major national publications. Conducted presentations at scientific and patient advocacy conferences, and arranged site visits by Members of Congress at research centers.
Achieved inclusion of a provision in the Patient Protection and Affordable Care Act which requires all health plans, including employer-sponsored health plans, to require coverage of routine patient costs for items and services furnished in connection with participation in approved clinical trials, and prohibited discrimination against patients on the basis of their participation in clinical trials.