Lymphoma Education and Advocacy Partners (LEAP)

Lymphoma Education and Advocacy Partners (LEAP)

The Lymphoma Research Foundation (LRF) established the Lymphoma Education and Advocacy Partners (LEAP) in an effort to coalesce the community around those policy issues which have the greatest impact on the lymphoma community. The major policies which LEAP will address in 2014-15 include both legislative and regulatory initiatives. They focus on those issues of highest priority to people with lymphoma, including access to quality cancer care, treatment cost, investment in innovation and lymphoma clinical trials.

LEAP's fundamental goal is to bring together patient advocacy organizations with similar missions to educate and advocate on behalf of the lymphoma community. We believe that through the collective voice of patients, survivors, caregivers and medical professionals, that legislation and policies can be developed so as to positively impact the lives of Americans living with a lymphoma diagnosis.

LRF is excited to be joined by our founding member organizations: the Cutaneous Lymphoma Foundation (CLF), the International Waldenstrom's Macroglobulinemia Foundation (IWMF), the T-cell Leukemia Lymphoma Foundation (TCLLF) and The Double Hit Lymphoma Foundation (TDHLF). We believe that working together to educate members of the lymphoma community on policies that affect their lives and assist them to engage with the individuals who develop these policies that we can really make a difference in the lives of those touched by a lymphoma diagnosis.

Below are general policy issues that LEAP members will explore in 2014. To learn more, visit the LRF Public Policy and Advocacy News or Advocacy Action Center.

Upcoming Webnair Information

LEAP will host its third webinar on Monday, June 22, 2015. The webinar will focus on access to care issues, specifically on new anti-cancer treatments and what the advocacy community can do to impact the passage of federal cancer drug coverage parity legislation. To register for the webinar please go to

Webinar Recordings

LEAP hosted a webinar on lymphoma clinical trials focusing on what the advocacy community can do to impact funding for clinical research and facilitate participation in trials. The webinar featured presentations by Paul Barr, M.D., Assistant Professor of Medicine and Director, Clinical Trials Office for the Wilmot Cancer Center, University of Rochester Medical Center; Victor Gonzalez, Patient Services Coordinator, Lymphoma Research Foundation; and Tony Glavan, LRF Ambassador. To view the webinar please go to

LEAP hosted its first webinar on cancer care planning and the Planning Actively for Cancer Treatment (PACT) Act. The webinar featured presentations from Dr. Carrie Thompson, Assistant Professor of Medicine, Mayo Clinic, Rochester, MN; Adriane Casalotti, MSW, MPH, Deputy Chief of Staff and Legislative Director, Office of U.S. Representative Lois Capps (CA-24); and Tom Condon, Board of Directors, Lymphoma Research Foundation. To view the webinar please go to

Cancer Care Planning

Lymphoma is a complex, highly variable and often life-threatening disease. For most cases of lymphoma, there are multiple treatment options available and patients and their care teams face a complicated decision-making process. Caring for cancer patients typically involves providers from several specialties, underscoring the importance of strong communication and coordination among providers and with patients. LEAP will explore the importance of cancer care planning and how a written cancer care plan can improve patient outcomes, increase patient satisfaction, and reduce utilization of health care resources.

Lymphoma Clinical Trials

Investigators are pioneering novel approaches to the development of new lymphoma therapies. While these innovators are pursuing new strategies to treat lymphoma, the U.S. regulatory framework has not kept pace. Regulators and federal scientific leadership must address this challenge and implement systemic changes which can make the drug development process more efficient, which in turn will allow promising new therapies to reach patients faster. LEAP will discuss the policies and developments in the clinical trials systems and ways in which advocates can make their voices heard.

Oral Chemotherapy Parity

In recent years, scientific advances have led to the availability of increased numbers of orally-administered medications to treat individuals with cancer, enabling many patients to undergo treatment outside of the hospital or doctor's office and go about their daily lives with minimal disruption. In addition, upwards of 30 percent of the drugs in the oncology pipeline are oral medications. Despite this trend, many health insurance plans impose significantly higher cost-sharing requirements on patients for oral cancer therapies than for traditional cancer drugs that are delivered intravenously. LEAP will examine ways to ensure equal reimbursement uniformity for all anticancer regimens regardless of delivery method.

If you are interested in learning more about LEAP, please email

Lymphoma Education and Advocacy Partners (LEAP)