Policy Priority: Equity

Equity

NCCN’s policy and advocacy department has made a resolute commitment to advancing cancer equity, actively collaborating with external stakeholders to identify and address systemic barriers, promoting equitable access to quality cancer prevention, treatment, and supportive services. View more about NCCN's work on advancing cancer equity. 

Care Coordination and Patient Navigation

NCCN has long recognized the importance of patient/provider communication and education throughout the cancer care continuum.  Over the last two decades, NCCN has developed a collection of resources and programs to support and educate stakeholders across the oncology spectrum, including physicians, researchers, nurses, policymakers, industry, payers, patients, and patient advocates.  NCCN publishes a library of NCCN Guidelines for Patients® based directly on the information found in the NCCN Guidelines to provide patients with the same information their doctors’ use, but in easier-to-understand language.  Additionally, the NCCN Guidelines for Survivorship are designed to provide a framework for the general survivorship care plus management for any potential long-term and/or late effects of cancer and its treatment that survivors may experience. In order to ensure optimal survivorship care for people with a history of cancer, NCCN affirms that:

• High-quality cancer care is only possible when patients are appropriately informed of their treatment options and engaged in a shared decision-making process with their healthcare provider. NCCN supports legislative, regulatory, and coverage policy that advances the utilization of care management plans and patient navigation to advance the delivery of patient-centered care in oncology. NCCN is pleased to see the new CMS policy in the (CY) 2024 Medicare Physician Fee Schedule (PFS) Final Rule that would provide for payment for Principal Illness Navigation services. While the new coding and payment for these navigation services are a crucial first step, reimbursement for such services is limited to certain settings and NCCN urges further expansion to additional settings.
• Cancer care planning and coordination services are a critical component of high-quality cancer care. As such, these services should be supported and expanded to improve patient/physician communication, patient-centered care and shared decision making.

Clinical Trials

• Years after the passage of the 21st Century Cures act, clinical trials still struggle with successful recruitment and retention of diverse patient populations. A 2019 study found that of the 230 clinical trials leading to FDA oncology drug approvals over the past decade, race was reported in only 145 (63%) trials. Of the studies that did report, people of color were significantly underrepresented. Additionally, the majority of clinical trials are restricted to adults between the ages of 18 and 64, resulting in an under-representation by children and older adults. In order to enable and encourage greater participation in clinical trials to further knowledge and extend access to the benefits from this mode of treatment, NCCN affirms that:
• Access to life-saving therapies for Medicaid enrollees requires the coverage of routine patient costs associated with participation in qualifying clinical trials. Routine costs include the non-experimental costs of treating a patient who is participating in a clinical trial, such as the cost of physician visits, laboratory tests, or follow-up visits required by the trial protocol.
• Trial participants may receive modest payments meant to lessen the financial burden of trial participation. These payments are reportable on tax form 1099 if remuneration exceeds $600 in a calendar year, which creates a barrier for participation. Treating these payments as taxable income deters participation by those who rely on public assistance because eligibility for these programs is typically based on an individual’s gross and net income and available resources. These payments should not be taxed as income.
• NCCN believes that the best management for any patient with cancer is in a clinical trial. Participation in clinical trials is especially encouraged. Clinical trials offer patients access to the most current cancer care, treatment by experts, carefully monitored results tracking, and the ability to help other patients with cancer.