LEAPing into lymphoma advocacy

Robin Levy

When someone is facing a lymphoma diagnosis the last thing they think about is public policy. However, public policy has the potential to impact the health, treatment and long-term survivorship of lymphoma patients just as much as scientific discovery.

Today, the individuals who develop these policies (elected officials, policymakers and regulators) directly impact the medical treatments patients access, the nation's investment in innovative research, and even the way in which health insurers pay for cancer care. Unfortunately, the majority of these decision makers know little about lymphoma. That is why it is critical for those people affected by lymphoma to become advocates and take an active role in the policy making process.

With that in mind, the Lymphoma Research Foundation (LRF) established the Lymphoma Education and Advocacy Partners (LEAP) program. LEAP was created in an effort to coalesce the community around those policy issues which have the greatest potential impact on the lymphoma community. 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).

LEAP will explore both legislative and regulatory initiatives and 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.

Through quarterly LEAP webinars, LRF will educate participants about these issues and prepare them to communicate with policymakers. These webinars will include presentations from experts in the field and will represent all points of view, including, scientific, legislative, and patient perspectives. At the conclusion of each webinar, participants will be given action items, such as email advocacy alerts that they can easily send to their Congressional Leaders.

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.

To learn more about LEAP please visit lymphoma.org/LEAP.

Robin Roland Levy is the Director of Public Policy and Advocacy at the Lymphoma Research Foundation. In this capacity, she leads the Foundation's legislative and policy initiatives before the U.S. Congress and federal agencies, and coordinates the activity of the organization's advocate community.

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