Public Policy and Advocacy News
The latest news affecting members of the lymphoma and greater cancer community
The Lymphoma Research Foundation (LRF) offers advocates and members of the lymphoma community the latest information on legislative and policy issues of high priority to people with lymphoma. Learn more about these issues and how together we can affect change and grow support for those issues most important to lymphoma patients and survivors. Bookmark and check this page often to keep up-to-date on the latest policy news and LRF Advocacy Program activities.
Lymphoma Research Foundation Announces the Launch of Lymphoma Education and Advocacy Partners (LEAP)
The Lymphoma Research Foundation (LRF) is pleased to announce the launch of the Lymphoma Education and Advocacy Partners (LEAP). LEAP is a coalition of lymphoma-specific organizations that will focus on public policies which impact the healthcare and treatment options of people with lymphoma. LEAP member organizations include 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). Read More >
May 7, 2014
LRF is pleased to announce a unique opportunity for an LRF Advocate to represent the Foundation and the greater lymphoma community on an advisory board which is being convened by the Society of Nuclear Medicine and Molecular Imaging (SNMMI).
SNMMI is a nonprofit organization that promotes the science, technology and the practical application of nuclear medicine and molecular imaging among professionals, advocates and the scientific community. The Foundation and SNMMI have collaborated on a number of patient and professional programs in the past. You can learn more about the organization by visiting their website (http://www.snmmi.org/). The volunteer opportunity is to be part of their Patient Advocacy Advisory Board. Please contact Robin Levy at email@example.com, for additional information as LRF will be managing the nominations process. Please note that interested candidates should plan on submitting a resume and personal statement as part of the nominations process. Read More >
Monday, March 31, 2014 is the last day to enroll for medical coverage for 2014
March 31, 2014 is the deadline to enroll in medical coverage for this year.
Cancer care can be expensive and can contribute to economic hardship for patients and their families, particularly for those who do not have health insurance. Cancer patients and their families should discuss any concerns they may have about health care costs with their doctor, a medical social worker, or the business office of their hospital or clinic. Please go to https://www.healthcare.gov/ for additional information.
Resources are available for those who need financial help to cover health care costs. These resources include government-sponsored programs and services supported by non-profit organizations. The Lymphoma Research Foundation can also assist patients to indentify organizations that provide financial assistance.
NIH Releases Sequestration Fact Sheet
In March of this year, as required by statute, across the board budget cuts - also known as sequestration - went into effect across all federal agencies, departments and programs. The sequestration requires the National Institutes of Health (NIH) to cut five percent (or $1.55 billion) of its fiscal year (FY) 2013 budget. NIH must apply the cut evenly across all programs, projects, and activities (PPAs), which are primarily NIH institutes and centers. This means every area of medical research, including lymphoma research, will be affected. The NIH has recently released a fact sheet detailing how the cuts will be implemented and their impact on the federal biomedical research enterprise.
May is National Cancer Research Month
National Cancer Research Month is an ideal time to remind policy makers and thought leaders of the important role that the federal government plays in finding a cure for lymphoma and all types of cancer. The Lymphoma Research Foundation recently signed a community letter to Congressional leaders urging their continued support and investment in cancer research.
Lymphoma Research Foundation Issues Statement on Sequestration
Recent news media reports indicate that cancer patients across the country may be negatively impacted by the effects of the sequestration on the federal budget. LRF has issued a statement as part of the Cancer Leadership Council on sequestration and reforms to the current reimbursement system for cancer care in the United States.
Lymphoma Research Foundation Provides Continued Leadership on Drug Shortage Issue
As required by the Food and Drug Administration (FDA) Safety and Innovation Act, the FDA is drafting a strategic plan to address the issue of drug shortages in the United States. LRF advocates played a critical role in educating law makers about the problem of drug shortages and asking for their support of the legislation. Now, the FDA is seeking public comment from interested parties as to the creation of its strategy to address this issue. LRF has weighed in as part of the Cancer Leadership Council, detailing recommendations that would benefit members of the lymphoma and greater cancer communities.
LRF Sends Letter to Lawmakers to Preserve Cancer Research Funding at the Department of Defense
In this difficult budget environment, LRF has continued to weigh in with lawmakers on the importance of the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DoD). Part of the CDMRP, the Peer Reviewed Cancer Research Program (PRCRP) was established in 2009 to support competitive research in cancers specifically designated by Congress as relevant to military service members and their families. Due to the efforts of LRF advocates, the $16 million program funds a variety of innovative lymphoma research.
Needed: Lymphoma Advocates with Information Technology Expertise
The Government Accountability Office (GAO) is accepting nominations for two vacancies on the Health Information Technology Policy Committee, which was established by the American Recovery and Reinvestment Act. GAO is interested in receiving nominations of individuals who are advocates for patients or consumers. To learn more about the nomination process, please contact LRF at firstname.lastname@example.org.
Lymphoma Added to List of Social Security's Compassionate Allowances Conditions
Non-Hodgkin lymphoma has been included on the Social Security Administration's (SSA) Compassionate Allowances List (CAL). The CA Program allows individuals affected by diseases on the list to apply and qualify for SSA disability benefits in an expedited manner. CAL conditions are selected using information received at public outreach hearings, comments received from the Social Security and Disability Determination Services communities, counsel of medical and scientific experts, and from the National Institutes of Health. In the past LRF advocates have supported the inclusion of all types of lymphoma on the CAL. To learn more, visit the SSA website.
Annual Report to the Nation on the Status of Cancer Released
The Annual Report to the Nation on the Status of Cancer, released this month, shows that overall cancer death rates continued to decline in the United States among both men and women, among all major racial and ethnic groups, and for all of the most common cancer sites. The report, produced since 1998, is co-authored by researchers from the American Cancer Society, the Centers for Disease Control and Prevention, the National Cancer Institute, and the North American Association of Central Cancer Registries.Overall, cancer incidence rates decreased by 0.6 percent per year among men, were stable among women, and increased by 0.6 percent per year among children, between 2000 and 2009. Incidence rates of non-Hodgkin lymphoma (NHL) were stable in both men and women. Cancer death rates in the United States decreased by 1.8 percent per year among men and 1.4 percent per year among women during the same 10-year period. Death rates among men decreased for 10 of the 17 most common cancers, including NHL; rates among women decreased for 15 of the 18 most common cancers, also including NHL. To view a summary of the report, visit www.cancer.gov.