AACR Call to Action
To reduce cancer health disparities, AACR calls upon policy makers to immediately address the following:
- Increase federal funding for medical research and public health initiatives that are tasked with reducing cancer health disparities.
- Improve collection of disaggregated data for racial, ethnic, sexual, and gender minority groups.
- Increase diversity in clinical trial participation.
- Enhance cancer prevention and screening efforts to reduce the burden of cancer among all medically underserved populations.
- Expand access to equitable and affordable quality health care.
- Build a more diverse STEMM trainee pipeline and cancer research and health care workforce.
Systemic inequities and social injustices have adversely impacted every aspect of cancer research and patient care, including limited participation in clinical trials and disparities in cancer incidence and outcomes. In addition, these inequities have created barriers to career advancement for underrepresented minorities. While new research and other initiatives are being developed and implemented to close these gaps, progress has come too slowly, and the cost of cancer health disparities remains monumental. To reduce cancer health disparities, the structural factors that lead to these outcomes must be eliminated.
Therefore, AACR calls on policy makers and other stakeholders committed to eradicating cancer health disparities to:
AACR recommends that Congress:
- Support NIH’s important research initiatives to reduce cancer health disparities. To continue this important work and support NIH’s invaluable contributions to the medical research enterprise, AACR calls on Congress to provide $49 billion for NIH’s base budget in Fiscal Year (FY) 2023, as well as to increase funding for the National Institute on Minority Health and Health Disparities.
- Fund NCI at $7.766 billion in FY 2023 to provide additional research opportunities for more diverse applicants and early-stage researchers, support comprehensive studies to examine differences in cancer incidence between population groups, and continue the important work of the Center to Reduce Cancer Health Disparities.
- Increase investments in CDC in FY 2023 to enhance initiatives such as the Social Determinants of Health Community Pilots, the National Breast and Cervical Cancer Early Detection Program, and the Racial and Ethnic Approaches to Community Health program, among others.
- Address the underfunding of Indian Health Service, which provides health care services for 2.6 million American Indian or Alaska Native individuals, many of whom live in remote rural areas with fewer health care options.
Investing in research and recording quality, disaggregated data for racial and ethnic groups are imperative to inform policy decisions to reduce cancer health disparities. For accurate and fully reflective data collection and analysis, AACR recommends researchers and policy makers to:
- Ensure collection and reporting of disaggregated data on cancer incidence, outcomes, survival, drug safety, and efficacy within racial, ethnic, sexual, and gender minorities to increase understanding of health disparities among these populations.
- Support the NIH UNITE Initiative, which facilitates inclusivity and diversity, and addresses structural racism within the scientific community, including at NIH.
- Continue to fund NIH’s All of Us Research Program with the goal of building a diverse database of one million volunteers that accounts for each participant’s environment, lifestyle, family medical history, and genetics to advance the field of precision medicine and improve health outcomes for human diseases including cancer.
Racial and ethnic minorities and other medically underserved populations are historically underrepresented in clinical trials. Clinical trial design should be modified to require inclusivity, reduce barriers for patient enrollment, and reach a broader patient population. To ensure racially and ethnically diverse clinical trial participation, AACR recommends the following:
- Require clinical trial sponsors and clinical investigators to:
- Submit a specific, prospective study plan that outlines how a clinical trial will recruit participants reflective of the patient population affected by the disease intended to be treated;
- Provide detailed strategies on how such goals will be met including approaches to overcome cultural barriers; and
- Set prospective plans for how to meet goals in the post market setting if demographic representation goals are not achieved prior to FDA approval of anticancer agents.
- Appoint diversity officers for phase II and III clinical trials to assist with trial design, community engagement, and recruitment strategies for achieving inclusion goals. The diversity officer’s role and responsibilities should be clearly defined, and training should be offered to sponsors and investigators on the desired qualifications of a diversity officer.
- Educate clinical investigators and physicians who refer patients to clinical trials on the importance of representation and inclusion in trials and provide training in the importance of cultural humility and the need to address implicit bias.
- Encourage U.S. federally funded trials to create site infrastructure that includes certified navigation, community health workers, and patient advocate networks to ensure diverse enrollment.
- Require that authors of clinical research studies provide background information on the representativeness of the patient sample and the generalizability of the research findings.
- Support passage of H.R. 6585, the Diverse and Equitable Participation in Clinical Trials (DEPICT) Act, which would provide FDA with the authority to require diverse representation in clinical trials, require enhanced data reporting on clinical trial demographics, and increase community engagement by providing grants to Community Health Centers to increase their capacity to participate in clinical trials.
- Support passage of H.R. 5030/S. 2706, the Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act, which would allow the U.S. HHS to issue grants or contracts to support education, outreach, and recruitment for clinical trials aimed at diseases with a disproportionate impact on underrepresented communities, and to reduce financial barriers associated with clinical trial enrollment by decentralizing clinical trial participation through the use of telehealth.
To best utilize evidence-based interventions for prevention, early detection, diagnosis, and treatment to reduce the incidence, morbidity and mortality of cancer, AACR recommends that policy makers:
- Close the disparity gaps in cancer screening using community outreach initiatives and patient navigators to connect individuals with screening and other resources, and using innovative tools such as bundled screenings and mobile screening vans to reach geographically remote underserved and rural communities.
- Fund programs such as the Health Resources and Services Administration Alcee L. Hastings Program for Advanced Cancer Screening in Underserved Communities to assist health centers in increasing access and removing barriers to cancer screening through patient education, outreach, and other community services.
- Support the World Health Organization’s Cervical Cancer Elimination Initiative by increasing HPV vaccination, screening, and treatment. In addition, enact H.R. 1550, the PREVENT HPV Cancers Act of 2021, which would enhance CDC efforts through national public awareness campaigns for HPV vaccines and HPV- associated cancers.
- Ensure that USPSTF cancer screening guidance considers race-associated differences in risk and health outcomes.
It is imperative that all Americans have access to affordable, high-quality health care regardless of their income or where they live. To reduce cancer health disparities in access to care, AACR recommends that policy makers and health care providers:
- Expand Medicaid to ensure that low-income Americans have access to health coverage, reduce underinsurance that poses financial burdens on patients, and ensure that health insurance covers follow-up care and medically necessary tests.
- Relieve the financial burden on safety-net hospitals by preventing cuts to the 340B Drug Pricing Program,
which reduces costs of prescription drugs for hospitals serving vulnerable communities. - Utilize patient navigators and community health care workers to guide patients with cancer from diagnosis through treatment and survivorship, improve patient satisfaction, and reduce disparities in health outcomes.
- Support cancer survivors by providing health coverage for common and effective tools, such as compression garments for lymphedema.
- Provide grants and financial support to expand high- speed Internet to reach underserved areas and reduce the digital divide.
To combat structural racism by ensuring that historically underrepresented groups have access to training, mentorship, and career progression in the cancer research and care workforce, AACR recommends that policy makers and the medical research community:
- Improve the medical school curriculum to educate a new generation of health care professionals and researchers in health disparities, social determinants of health, implicit bias, cultural humility, and community engagement.
- Increase the diversity of the cancer research and care workforce so that it reflects the population of patients with cancer in the United States.
- Support student loan repayment programs to make health care careers more accessible for historically underrepresented communities and provide student loan assistance to researchers who focus on racial and ethnic disparities in health.
- Create a network of skilled patient advocates from underrepresented communities and populations.
- Utilize mentorships and peer networks to increase career and financial security for researchers from underrepresented minority populations.
The Health Equity and Accountability Act (HEAA), which is a comprehensive legislation introduced on behalf of the Congressional Tri-Caucus comprised of the Congressional Black Caucus, Congressional Asian Pacific American Caucus, and the Congressional Hispanic Caucus, aims to eliminate racial and ethnic health inequities and expand access to high-quality and affordable health care. AACR recommends passage of provisions of the HEAA that would:
- Expand Medicaid under the Affordable Care Act to the remaining states that are yet to implement expansion.
- Increase diversity within the health care workforce by providing grants to HBCUs and Minority-Serving Institutions for counseling, mentoring, and providing financial assistance to recruit underrepresented minority individuals within graduate programs in health care and related fields.
- Implement a Lung Cancer Mortality Reduction Program aimed at reducing lung cancer mortality by at least 25 percent; establish an Interagency Prostate Cancer Coordination and Education Task Force across federal agencies to expand prostate cancer research, screening, awareness, and testing; and require the U.S. HHS to evaluate disparities in the quality of cancer care within Medicare.
- Reduce the prevalence of tobacco use by expanding coverage for tobacco cessation services under Medicaid and private health insurance plans, increase the excise tax on cigarettes, and create tax parity for other tobacco products.
Fulfilling the recommendations included in our Call to Action demands ongoing, active participation from a broad spectrum of stakeholders. These efforts must be coupled with actions to eradicate the systemic inequities and social injustices that are barriers to health equity, which is one of our most basic human rights.