Summary of Legislation Introduced by States in 2021
In addition to fostering a dialogue with policymakers, NCRA
monitors state and federal legislation impacting cancer, cancer registries and
other medical registries. Dozens of bills at the state and federal levels were
reviewed this summer.
Arkansas passed HB1155 to make it easier for qualified
health researchers to get deidentified cancer data. The law ensures that
researchers are adequately trained about protecting individuals' health data.
North Carolina saw legislation introduced to provide for an
enhanced cancer cluster protocol. The bill establishes a cancer cluster
subcommittee and requires the hiring of a state cancer epidemiologist.
A Rhode Island state legislative proposal from State
Representative Barbara Ann Fenton-Fung (R) advanced that would guide the
release of mammography reports, allowing results to be e-mailed.
Maine State Representative Anne Perry (D) had a bill signed
into law that established a state Health Data Organization Health Information
Advisory Committee. The committee will make recommendations regarding public
reporting of health care trends.
Upstate NY Congressman Brian Higgins (D) introduced a bill
to provide funds to the Centers for Medicare & Medicaid Services to provide
grants to entities to establish lung cancer screening registries approved by
the Centers for Medicare & Medicaid Services.
Long Island, NY Congressman Lee Zeldin (R) introduced a bill
to establish a study of Liver Cancer among Vietnam veterans.
In July, Tampa Congresswoman Catherine Castor's (D) bill to
establish a public awareness campaign for HPV cancer vaccinations was
recommended by a House Committee.
July 2020 Update
NCRA members participated in more than a dozen conference calls with the offices of members of Congress on May 19 for a "Virtual Lobby Day and Online Day of Action." NCRA was one of ten One Voice Against Cancer (OVAC) member organizations to lend a hand. NCRA volunteer leaders Sara Biese of Wisconsin, Curry Chapman of Alabama, and Karen Mason of Florida were grouped with members of other cancer-fighting organizations to brief Senate and House staff on the need for increased research funding. In two cases, they spoke directly with
representatives. Lawmakers were targeted because of their key roles in shaping the nation's health budget.
Representative Ron Kind spoke with Sara's Wisconsin group, sharing the very personal story of his son's fight with cancer. He shared strong support for cancer research and program funding saying, "Now is not the time to take our foot off the accelerator."
Curry said that, "Overall it was a great day. I was able to provide information about cancer registries and how vital the data is for research, including planning prevention and early detection programs, identifying at-risk groups, cancer causes and prevention strategies, and evaluating treatment efficacy. Each office showed interest in supporting funding for cancer registries and had a better understanding on the vital importance of cancer registries in improving patient outcomes."
Karen reported that, "Congressman Soto (D-FL) showed a keen interest in cancer registry data and the work that we do to provide this vital information for research. During each meeting, I noticed a keener sense of how important fast reliable data is now as a result of the COVID-19 pandemic. Congressman Soto was attentive and very personable and put us very much at ease. I was honored to lobby for funding for cancer prevention, screening, and research."
Here's a link to the OVAC agenda that Sara, Curry, and Karen were advocating for during each call, including a $19 million increase for cancer registries, in the FY2021 Federal budget.
We also signed on to two industry letters in support of OVAC's mission that were sent to Congress:
FY2018 OVAC Budget Deal Letter
Emergency Triage Letter
April 2020 Update
Communicating with Congress during the COVID-19 Pandemic
NCRA will be participating in a grassroots "Virtual Lobby Day" on Tuesday, May 19, with dozens of other One Voice Against Cancer (OVAC) member organizations. NCRA members will have a chance to help Congress understand the value of cancer registries and proposals to fund real-time data reporting. NCRA will update members on ways to help in the coming weeks, including sharing social media messages via Twitter and Facebook. In addition, the "Virtual Lobby Day" will include special requests of NCRA members who reside in specific Congressional districts to participate in conference calls with Congressional staff members who represent them. Stay tuned for a list of the key Senators and House members to see if you are represented by them.
NCRA recently joined more than 50 OVAC member organizations in calling on Congress and the administration to take action to help cancer patients gain, maintain, and afford health coverage during the ongoing COVID-19 pandemic.
NCRA also co-signed several letters last week that were sent to Congressional leadership (link to the attached) and Alex Azar, Secretary, Department of Health and Human Services, detailing proposals to alleviate challenges for patients during the COVID-19 pandemic. The policy options include ensuring that patients have access to a 90-day supply of medications, requiring insurance plans to cover oral chemotherapy the same as intravenous treatments, creating a special enrollment period so uninsured or underinsured Americans can enroll in comprehensive health plans established under the Affordable Care Act (ACA), and increasing funding for state Medicaid programs and subsidies to help people who lose their employer-sponsored health care afford their health insurance premiums for up to six months. Other suggested changes involve ensuring health plans do not penalize patients for having to seek out-of-network care, should their regular providers be closed or unavailable due to the pandemic and promoting the use of telehealth.
March 2020 Update
Report on March 11 Capitol Hill Visits
Through its partnership with Once Voice Against Cancer (OVAC), NCRA knocked on doors on Capitol Hill this week to educate members of Congress about the important role of cancer registries and to push for an increase to budget appropriations for cancer programs at federal agencies.
The Hill Visits were especially important since they come at a time when President Trump's proposed FY2021 Federal Budget would drastically cut all federally supported cancer programs. OVAC and its members are challenging these suggested cuts with a proposed package to increase cancer program funding - not decrease this important funding. Key messages from the Capitol Hill visits:
NCRA takes an active role in advocating on behalf of cancer registrars and registries. Working with NAACCR to present a united voice on the importance of hospital and central registries, the two organizations sent a letter to all new members of Congress. The letter outlined the role of cancer registrars and explained how the cancer registry system is one of the most fundamental ways public health professionals, physicians, and researchers understand and address cancer. NCRA and NAACCR have also worked together to prepare the fact sheet, Cancer Registries: Providing Quality Cancer Data to Inform Policy at the Local, State, and National Levels.
Presenter Adam Ebbin, NCRA’s public policy and strategy consultant, discusses the value of our advocacy initiatives and how we work with partners in support of them. He outlines how NCRA identifies policy opportunities that support the work of registrars and describes how we develop and implement effective strategies to see them adopted. Adam also reviews current advocacy efforts and future priorities.
In addition to his work with NCRA, Adam Ebbin also serves as a Virginia State Senator, representing portions of Alexandria, Arlington and Fairfax County. Prior to his election to the Senate in 2012, Ebbin spent eight years in Virginia’s House of Delegates.
One Voice Against Cancer (OVAC) is a collaboration of national non-profit organizations representing millions of Americans, delivering a unified message to Congress and the White House on the need for increased cancer-related appropriations. NCRA is an active member of OVAC, representing the role and importance of cancer registrars and registries. Recently, NCRA participated in Capitol Hill visits with other members of OVAC. NCRA members explained the work of cancer registrars and asked Congressional leaders to appropriate at least $70 million for the CDC’s National Program of Cancer Registries. The OVAC Fact Sheet on Cancer Registries was included in information packets.
Current activities with OVAC include Capitol Hill action where NCRA knocked on doors in March 2020 to educate members of Congress about the important role of cancer registries and to push for an increase to budget appropriations for cancer programs at federal agencies.
The Hill Visits were especially important since they come at a time when President Trump's proposed FY2021 Federal Budget would drastically cut all federally supported cancer programs. OVAC and its members are challenging these suggested cuts with a proposed package to increase cancer program funding - not decrease this important funding. Key messages from this week's Capitol Hill visits:
Part of this effort included NCRA signing on to a letter OVAC sent to members of Congress in support of this funding.
On April 6, 2017, during the NCRA 2017 Annual Education Conference in Washington, DC, many NCRA members conducted visits to Capitol Hill to discuss with their representatives the important role cancer registrars play in improving public health outcomes by collecting data that informs cancer research, treatment, and prevention programs. NCRA conducted an in-depth orientation for participants and prepared information packets outlining the important work of cancer registrars. The packets were customized to include state fact sheets, showcasing how cancer registry data are used to promote state-focused public health initiatives and inform state-wide and national research.
Cancer Registrars: Improving Lives through Quality Cancer Data Management
Key Messages: 2017 Walk on the Hill
Walk on the Hill Participant Orientation
NCRA advocated successfully for a new Standard Occupational Classification (SOC) for medical registrars. On December 7, 2017, the Bureau of Labor Statistics announced the establishment of a detailed occupation code of “Health Information Technologists and Medical Registrars" in the SOC system. The new detailed occupation code reflects the increase use of data to improve medical treatment and care and the critical role cancer registrars play in collecting that data. The new code will also ensure that the statistics on the cancer registry workforce will be more accurate, providing a clearer understanding of the current and future workforce needs; correct salary information will help recruit and retain qualified individuals; and skill-appropriate personnel will be hired to fill cancer registrar positions at both the central and hospital levels. Read the press release.
NCRA has prepared materials to help its members and other medical registrars understand the importance and the process for establishing a distinct detailed SOC occupation code for “Medical Registrars”. The following video presentation outlines NCRA’s rationale and the SOC revision process.
Cancer registrars are data information specialists that capture a complete history, diagnosis, treatment, and health status for every cancer patient in the U.S. The curated data provides essential information to researchers, healthcare providers, and public health officials to better monitor and advance cancer treatments, conduct research, and improve cancer prevention and screening programs. Learn more about how to become a cancer registrar and how cancer registry data is used to improve public health.
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