2020 LRF Policy Agenda
The Lymphoma Research Foundation (LRF) recognizes that public policy is critical to achieving its mission, to eradicate lymphoma and serve those touched by this disease. Toward that end, the Foundation is committed to advocating on behalf of the entire lymphoma community in support of this mission, working collaboratively with policymakers, the medical community, patient advocates and other stakeholders to advance those efforts that will improve the lives of people with lymphoma. The Foundation and its network of thousands of grassroots advocates across the United States support policy measures which will increase federal funding for lymphoma research and education and ensure patient access to high-quality cancer care. As an extension of these efforts, LRF seeks the integration of the lymphoma community’s perspective throughout the policymaking process and urges that lymphoma patients, survivors and their loved ones be appointed to relevant federal panels, committees and commissions.
The Lymphoma Research Foundation supports the following policy initiatives, which would increase federal investment in lymphoma research and funding for agencies like the U.S. Food and Drug Administration so that new lymphoma treatments can become available to patients faster. These efforts include:
- Increased funding for the National Institutes of Health (NIH) and the National Cancer Institute, including enhanced support for early-career investigators whose innovative research has the potential to make noteworthy advancements in cancer
- Greater support for the nation’s clinical trials enterprise and improvements to infrastructure, including efficiencies to the clinical trial development process, maximization of secure data sharing and focus on patient-centered outcomes.
- Continued support for the Food and Drug Administration, including the Oncology Center of Excellence, to ensure efficient review of new cancer therapies and integration of the patient voice in drug development and review activities.
- Support for efforts by regulators and clinicians to improve the collection of real-world data that will improve knowledge about long-term benefits of treatments, quality-of-life advantages of treatments, and treatment-related side effects.
- Increased support for research and infrastructure for the development of new therapies for rare lymphoma subtypes and underserved populations, such as adolescent and young adult lymphoma patients.
Improved Access for Patients
The Lymphoma Research Foundation endorses legislation and regulations which seek to increase access to comprehensive lymphoma treatment and cancer survivorship care, including:
- Public policies that ensure access to adequate and affordable health insurance coverage for people with lymphoma and protect access to quality cancer
- Payment and delivery reform efforts that assist health care providers in improving the quality of cancer care in the United States.
- A health care system that collects real-world data to support access to therapies and quality
- Coverage standards in public and private health insurance systems to protect access to all approved anticancer regimens including, but not limited to oral and intravenous drugs, injections, cellular therapy, surgery, radiation and
- Implementation of policies which support the development of new therapies and clinical trials for rare diseases and policies which assist and encourage patient
- Revision of clinical trial enrollment criteria to encourage more diversity among trial enrollees, accompanied by outreach and education efforts to increase trial enrollment among the elderly, rural residents, and ethnic and racial minorities.
The Lymphoma Research Foundation endorses legislation that recognizes the increased number of cancer survivors in the United States and the needs of people living with and after a lymphoma diagnosis. These efforts include:
- Legislation which protects access to quality health insurance for anyone with a preexisting condition.
- Health care payment and delivery reforms that will incentivize the delivery of quality survivorship care for patients across the cancer care continuum. Among these reforms are education and provider reimbursement for cancer care planning to improve planning services for all people with lymphoma.
- Polices that would increase funding for cancer survivorship research and the study of treatment side effects.