The Academy of Oncology Nurse & Patient Navigators (AONN+) Policy & Advocacy Committee was launched in 2018 with a goal of utilizing legislative, regulatory, and policy advocacy to protect and promote the practice of oncology patient navigation to best serve individuals and families impacted by cancer. The goals of the committee are to: (1) promote access to comprehensive, timely, affordable, and high-quality cancer care for all patients through public policy and grassroots advocacy; (2) identify policy opportunities to advance the patient navigation profession; (3) develop grassroots tools and encourage AONN+ members to engage in policy advocacy; and (4) work with allied organizations on policy issues of common interest.
In 2018, AONN+ joined the Cancer Leadership Council (CLC), one of the nation’s leading oncology policy and advocacy coalitions. Formed in 1993, the CLC is composed of dozens of patient advocacy organizations, professional societies, and research groups dedicated to ensuring that cancer patients have access to high-quality care. Issues of ongoing concern to the CLC include: (1) initiatives to enhance the quality of cancer care, (2) development of appropriate systems of care for cancer survivors, (3) implementation of healthcare reform, (4) adequate funding for biomedical research, (5) appropriate third-party coverage of cancer therapies, and (6) improvements in the process for approval of new anticancer therapies.
AONN+ also supports other patient advocacy organizations to promote important issues related to navigation, patient care, and access to care.
In 2023, AONN+ has supported 4 letters sent to Washington, DC, to be the voice of patients with cancer.
AONN+, as a member of the CLC, had the opportunity to comment on the proposed rule related to the Notice of Benefit and Payment Parameters (NBPP) for 2024. The NBPP outlines the rules and regulations for healthcare plans offered on the Affordable Care Act (ACA) Marketplaces.
Specifically, the NBPP addresses:
As quoted from the letter: “As a nation, we have made important strides in reducing deaths from cancer, through a combination of prevention, early detection, and more effective therapies. The cancer death rate for men and women combined fell by 33% from 1991 to 2020. The toll of cancer is still significant, with a total of 1.958 million new cancer cases expected in the United States in 2023. In that same year, 609,820 cancer deaths are expected. The progress in cancer mortality ‘increasingly reflects advances in treatment.’”1 However, progress is threatened by rising incidence for breast, prostate, and uterine cancers, which are also the cancers that have the largest racial disparities in mortality.
“To continue progress in prevention, early detection, and treatment of cancer from diagnosis through the cancer trajectory, cancer patients must have access to adequate and affordable health care. Their insurance coverage must assure them access to the multi-disciplinary care they require at a cost that will not bankrupt them and deter them from receiving care. In our comments below, we comment on provisions of the proposed rule that advance this fundamental goal of protecting access to adequate and affordable care and recommend additional actions to protect cancer patients’ access to quality care.”
In collaboration with the CLC, AONN+ provided advice to the Centers for Medicare & Medicaid Services (CMS) on the Essential Health Benefits (EHB) after a decade of ACA plan experience. The EHB is a set of 10 categories of services health insurance plans must cover under the ACA. These include doctors’ services, inpatient and outpatient hospital care, prescription drug coverage, pregnancy and childbirth, mental health services, and more.
This is not the first CMS effort to solicit EHB advice, but this is an important inflection point—due to insurance market changes, treatment advances, and the pressing need to address healthcare disparities—for assessing ACA plans and how they serve Americans who depend on their coverage. The collective comments focused on people with cancer and revisions to EHB to ensure their access to quality cancer care. These included:
In February 2023, AONN+ along with the collective CLC commented on the proposed rule related to the Medicare Program Contract Year 2024 Policy and Technical Changes. The comments focused on utilization management requirements in Medicare Advantage (MA) plans and included recommendations to strengthen care coordination for all enrollees and to address issues of health equity. The key points addressed in the letters reflected:
AONN+ signed this letter with the National Coalition for Cancer Survivorship. The elimination of CMS code S2068 threatened access to DIEP flap surgery, a reconstruction surgery preferred by many individuals, relegating the procedure accessible only to those who would be able to pay for the surgery out of pocket. The removal of code S2068 also had the potential to exacerbate disparities in access to quality breast cancer care.
In a positive follow-up, CMS announced that it is reexamining its decision to sunset the S code for DIEP flap reconstruction and will consider public input from a June 1 public meeting. This is a direct result of the advocacy by patients, patient advocacy organizations, professional societies, and healthcare professionals.
AONN+ is proud to be a part of the policy and advocacy community to make a difference in the lives of patients with cancer and their families.
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