NCRA actively supports cancer registrars through conducting surveys, analyzing public policy, and promoting change. Several past advocacy successes are noted below.
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
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.
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:
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.
NCRA brought the cancer registrars’ message to Congress through its Walk on the Hill during its 2012 Annual Conference in Washington, DC. Cancer registrars met with their representatives and asked them to support unified cancer prevention and control activities at the CDC. NCRA prepared information packets outlining the important work of cancer registrars. The packets were customized to include state fact sheets showcasing how cancer registry data was used to promote public health initiatives in the state and inform state-wide and national research.
NCRA conducted a survey to establish staffing and productivity guidelines to benefit the entire field of cancer registration and surveillance.
NCRA was asked to help solicit House of Representatives on the Allied Health Reinvestment Act. NCRA created a grassroots campaign and delivered 300 signed postcards to representatives.
NCRA brought the cancer registrars message to Congress by taking its first Walk on the Hill. NCRA represented two bills including the Allied Health Reinvestment Act and the National Cancer Act of 2003. NCRA members met with US Representatives and Senators from their congressional district after meeting with representatives who already supported the bill.
NCRA participated in C-CHANGE, a collaboration to conquer cancer and is recognized as a full partner in cancer issues.
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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