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.
LRF Attends White House Cancer Moonshot Meeting
The Lymphoma Research Foundation’s (LRF) CEO, Meghan Gutierrez, was honored to represent the lymphoma community at the White House, during the Cancer Moonshot Open Innovation meeting, to discuss reaching Cancer Moonshot goals. Cancer Moonshot began in 2016 when former President Barack Obama recognized the need to increase the fight against cancer. The former president called on former Vice President Joe Biden to lead the Moonshot initiative to dramatically accelerate efforts to prevent, diagnose, and treat cancer. This was the final Cancer Moonshot meeting of the Obama Administration, and was comprised of roughly thirty attendees, from patient advocacy groups, and White House staff. The meeting was arranged to discuss what open innovation approaches can be applied to make progress on Cancer Moonshot goals, and how these approaches can be implemented moving forward.
Lymphoma and the Cancer Moonshot, A National Roundtable Discussion
The Lymphoma Research Foundation, the nation's largest non-profit organization dedicated to eradicating lymphoma and serving those touched by the disease, hosted an online roundtable discussion of lymphoma patient advocates to discuss the national Cancer Moonshot Initiative. The discussion explored strategies to invest in promising areas of lymphoma and CLL research; encourage greater access to and participation in clinical trials; ensure wide access to treatment for all patients; and encourage researchers to share data. Click here to listen to a recording of the webinar. Click here to view official flyer >
Amendment #4369 Passed in US Senate to Preserve Federal Funding of Medical Research Through the Department of Defense
The Lymphoma Research Foundation thanks Senate leaders for swift action to preserve federal funding of biomedical research conducted through the Department of Defense (DoD). Thanks to the efforts of advocates across the country, the bi-partisan amendment, led by Senator Richard Durbin (D-Ill) and Senator Thad Cochran (R-MS), passed in the Senate on a 66-32 vote yesterday afternoon. Its passage blocked an effort that would have prohibited biomedical research funding at the DoD unless the research met narrowly defined criteria related to military relevance and would have subjected doctors and scientists to the level of scrutiny currently reserved for complex, multi-million dollar weapons systems. This funding included the DoD's Peer Reviewed Cancer Research Program which includes lymphoma. To view the list of senators who voted for the amendment, click here >
Lymphoma Research Foundation Hosts Congressional Briefing on Adolescent and Young Adult (AYA) Lymphoma
The Lymphoma Research Foundation's Erase Lymphoma Initiative hosted a successful briefing on Capitol Hill on Tuesday, March 22, 2016 for members of Congress and U.S. federal policy makers. The briefing entitled, "Tackling Adolescent and Young Adult (AYA) Lymphoma" and was held in collaboration with Representative Lois Capps (D CA-24) and Representative Lee Zeldin (R NY-01). The briefing was designed to educate policy leaders on the complex issues faced by young patients, caregivers, physicians, and scientists pursuing new treatment options. Read More >
LRF Announces Adolescent and Young Adult Lymphoma Briefing
on Capitol Hill
The Lymphoma Research Foundation (LRF) will host a Congressional Briefing in collaboration with Reps. Lee Zeldin (NY-1) and Lois Capps (CA-24), as part of its adolescent and young adult initiative (AYA), Erase Lymphoma. The briefing, Tackling the Challenges of Adolescent and Young Adult Lymphoma, takes place on March 22 and features prominent guest speakers from the medical and lymphoma community.
LRF Applauds Moonshot to Cure Cancer
On the heels of the 2016 State of the Union address, the Lymphoma Research Foundation (LRF) applauds President Obama and Vice President Biden in the President's vision to "make America the country that cures cancer once and for all." LRF's robust Advocacy Program works diligently to make the voice of the lymphoma community heard at the federal level and provides volunteers with the tools necessary to garner support for public policies most important to the lymphoma community. To learn more, read LRF's official press release. To receive updates on the latest advocacy and public policy news including Moonshot to Cure Cancer, register to become an LRF Advocate.
LRF Endorses Cancer Drug Parity Act
The Lymphoma Research Foundation announced its support of the Cancer Drug Coverage Parity Act, S. 1566/ H.R. 2739. The bipartisan legislation was introduced in the U.S. Senate last week by Senators Mark Kirk (R-IL) and Al Franken (D-MN) and in the U.S. House of Representatives by Congressmen Leonard Lance (R-NJ) and Brian Higgins (D-NY). This bill is a critical step toward improving access to anticancer treatments by requiring insurance coverage of patient-administered and physician-administered anticancer drugs at the same cost to patients. To learn more, read LRF's official press release. Visit LRF's Advocacy Center to urge your legislator to support the Cancer Coverage Parity Act.
Lymphoma Education and Advocacy Partners (LEAP) to Host Third Webinar on Access to Patient Care
The Lymphoma Education and Advocacy Partners (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 https://attendee.gotowebinar.com/register/6814769036806676225. To learn more about LEAP please go to www.lymphoma.org/leap.
LRF's Initiative, Lymphoma Education and Advocacy Partners (LEAP), hosts its second webinar focusing on lymphoma clinical trials.
The Lymphoma Education and Advocacy Partners (LEAP) hosted a webinar today 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 listen to the call please go to https://attendee.gotowebinar.com/recording/1265743856508120321
Please join LRF for the First Annual State of the Union Call
This is the inaugural State of the Union call for LRF's Policy Patrons. We will discuss issues addressed in President Obama's State of the Union Address and current issues that affect the lymphoma community. For this year only the call will be open to all those who are interested. Please join us and see one of the many benefits of becoming a policy patron.
National Cancer Institute Requests $823 Million Increase
The National Cancer Institute (NCI) has recently released its Annual Plan and Budget Proposal for Fiscal Year 2016, a budget which outlines the NCI's goals and objectives, as well as the federal funds required in to implement these initiatives. NCI is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the treatment of cancer, including every subtype of lymphoma. Without the leadership and financial investment in the NCI, many of these lymphoma-specific research projects would likely not occur or would be of smaller scale and progress at a slower pace.
This year's plan, entitled Building on Opportunities in Cancer Research, proposes a budget of $5.754 billion, which translates to an increase of $823 million above the 2015 appropriation to NCI. The report summarizes key NCI programs and initiatives, provides detailed budget recommendations, and highlights progress in cancer research and future opportunities. In the coming months, LRF advocates will call on members of Congress to support the NCI and its investment in lymphoma research. Register to become an advocate today to receive regular updates on this critical issue.
LRF Announces the Launch of its new Policy Patrons Program
The Lymphoma Research Foundation (LRF) is pleased to announce the launch of its new Policy Patrons Program. The Policy Patron Program allows LRF Advocates to further their involvement and commitment to the LRF advocacy program.
For an annual gift of $20 to LRF, a Policy Patron will receive an exclusive State-of-the-Union call with the Director of Public Policy and Advocacy and exclusive invitations to advocacy program events. Read more >
LRF offers Comments to CMS on the Center for Medicare and Innovation's Oncology Care Model
LRF has commented as part of the Cancer Leadership Council (CLC) on the efforts of the Center for Medicare & Innovation's efforts to design, implement and evaluate an oncology payment model, called the Oncology Care Model (OCM). The CLC offered advice on the specifics of the OCM plan which sets one of the five requirements that practices must fulfill a care plan developed in accordance with the standards of the Institute of Medicine Care Management Plan. Read More >
LRF's new initiative, Lymphoma Education and Advocacy Partners (LEAP), is featured on the Curetoday.com blog
LRF Director of Public Policy and Advocacy, Robin Levy, discusses the importance of rallying around policies issues which have the greatest potential to impact the lymphoma community through the Lymphoma Education and Advocacy Partners (LEAP) program. Read More >
LRF Urges CMS to begin discussions focused on options for Improving Cancer Survivorship Care
The Centers for Medicare & Medicaid Services (CMS) is currently working on rule changes for the Payment Policies under the Physician Fee Schedule for CY 2015 and issued a request for comments. LRF has weighed in as part of the Cancer Leadership Council, commending CMS on actions it has taken so far to strengthen care planning and coordination through the fee-for-service system, but urges "CMS to bring to the task of cancer survivorship care the same openness and creativity it has brought to other reforms of fee-for-for-service payment to encourage care planning and coordination." Read More >
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.