NCRA actively supports cancer registrars through conducting surveys, analyzing public policy, and promoting change. Several past advocacy successes are noted below. 

NCRA and North American Association of Central Cancer Registries

(NAACCR)

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

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 .

 

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. Learn More.

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. Learn More.

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. Learn More.

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. Learn More.

Upstate New York 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. Learn More.

Long Island, New York Congressman Lee Zeldin (R) introduced a bill to establish a study of Liver Cancer among Vietnam veterans. Learn More.

In July, Tampa, Florida Congresswoman Catherine Castor's (D) bill to establish a public awareness campaign for HPV cancer vaccinations was recommended by a House Committee. Learn More.

 

One Voice Against Cancer (OVAC) 

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:

  • Ask for support to fund NIH at $44.7B. This is an increase of $3B.
  • Ask for support to fund NIH at $6.9B. This is an increase of $500M.
  • Ask for support to fund CDC Cancer Programs at $559M, including funds of $70M specifically for the National Program of Cancer Registries at CDC.

 

Part of this effort included NCRA signing on to a letter OVAC sent to members of Congress in support of this funding.

Diverse Trials Act (H.R. 5030/S. 2706) 

NCRA has joined together with 156 organization to support the Diverse Trials Act. The Diverse Trials Act will help enable more routine financial support from trial sponsors for patient non-medical costs associated with clinical trial participation. It will clarify sponsors who can provide technology for patients to participate remotely in clinical trials, and required HHS to develop guidance on ways decentralized clinical trials can be employed to increase trial diversity. These efforts will support cancer patients in clinical trials who currently face financial or logistical barriers.

NCRA’s Diverse Trials Act Sign on Letter 2021

Standard Occupational Classification (SOC) Efforts 

New SOC resource – In order to assist our members in self-advocating for the proper classification of their position, NCRA created a “position” document. The document explains the current classification by the Department of Labor of our profession and the importance to work force planning, recruitment and retention for facilities to assure that they are using the Health Information Technologists and Medical Registrars Standard Occupational Classification number 29-9021. Please download this document and share with your program administrator or HR department.

Health Information Technologists and Medical Registrars - SOC 29-9021