Welcome back to Navigation Refresh, a recurring, informative feature for novice and seasoned patient navigators alike. In this issue, we cover the role of patient navigators in advocacy.
Advocacy is the act of supporting someone or something. This may be for a patient’s rights or preferences. It also may be for a procedure or policy. Advocacy can happen at the individual, institutional, or societal levels.
Patient navigators first and foremost advocate for patients, survivors, families, and caregivers.1 This might look like encouraging patients to speak up and self-advocate, helping to build the patient’s self-advocacy skills, educating patients about their rights, helping patients document and communicate their needs, and advocating on behalf of the patient to the healthcare team to ensure patient and family preferences and needs are integrated into treatment care planning. Second, patient navigators advocate for care coordination and system improvements to smooth processes for patient access to care and quality of care.
Today, we are going to talk about the third kind of advocacy, which may be less common or familiar to patient navigators—policy advocacy.
The core of the navigation profession is advocating for patients to optimize the experience, well-being and outcomes of patients across the continuum of cancer care. However, patient navigators can play a critical role in policy advocacy, since policies at the institutional, local, state, and federal level affect patients’ insurance coverage (and thus access to care), as well as community resources available to meet patient needs and funding to make research possible for care improvements.
On July 4, 2025, President Trump signed into law the “One Big Beautiful Bill.” This bill adds work requirements for Medicaid beneficiaries. While many people support work requirements for people who are reliant on Medicaid, most people do not know that the majority of people who rely on Medicaid already work.2 Based on a 2023 analysis, 44% of people relying on Medicaid worked full-time and 20% worked part-time for small employers that do not offer health insurance benefits. 2 For those who worked part-time, reasons for part-time work included family obligations, being enrolled in school or training, health or medical limitations, child care challenges, or inability to find full-time work.2 Nearly 30% of Medicaid beneficiaries could not work at all due to school attendance, illness or disability, or caregiving responsibilities.2 Of the remaining minority of beneficiaries, reasons for not working included retirement and inability to find work.2
The Congressional Budget Office estimates that approximately 17 million people will lose insurance coverage by 2034 because of Medicaid eligibility changes and expiration of tax credits from the Affordable Care Act.3 The cuts to the Medicaid program will happen over several years, with work requirements slated to be implemented by December 31, 2026.3
The new law will disproportionately impact older and disabled people, directly affecting people going through cancer treatment. First, increased administrative requirements and reporting have been shown to historically reduce enrollment in Medicaid while not increasing employment.4 In some cases, this is because people did not have a computer or lacked computer literacy or internet access, which impeded their ability to set up required accounts.4 Technical glitches, broken web site links, and unclear guidance also have contributed to confusion and unenrollment.5 Based on experiences in Arkansas, people may be unaware of new requirements, have difficulty understanding new processes, and have little access to technical assistance to comply with new requirements.6 Monthly reporting of work may also lead to unenrollment due to seasonal income fluctuations that temporarily disqualify a person from the income threshold despite eligibility based on annual income.6
The result is that many people who need cancer screenings and cancer treatment will be locked out of coverage. Past research has shown that people without insurance coverage in the United States are diagnosed at later stages of cancer when care is more expensive and outcomes are worse. While some states may have exemptions from work requirements for those with serious illness, like cancer, this is not universally true. People undergoing cancer treatment and surviving cancer may find it difficult to work full time and adhere to appointments. They may also experience significant health effects of treatment that limit their ability to work.
Cancer centers will have increased administrative requirements as administrators will need to confirm on a monthly basis whether a patient has coverage. Further, patients who are unable to work due to treatment appointments or side effects require individualized assessment and documentation from a treating physician that confirms a cancer diagnosis and its impact on the patient’s functional ability to work for a specific period. This will put additional strain on the cancer care system, healthcare professionals, patients, and patient navigators.
Lower insurance coverage will disproportionately affect rural hospitals, because rural hospitals typically have the smallest operating margins. This means that reductions in payment that will result from less insurance coverage will severely impact rural hospitals. While the Senate bill includes a $50 billion relief fund for rural hospitals, access to these funds come with new administrative requirements from states and do not make up for the losses that rural hospitals will experience, putting them at immediate risk of closure.3,7
Since January, other executive administration actions have canceled thousands of research grants and frozen funding for science to leading universities. While the One Big Beautiful Bill cut overall funding for research, including a 40% cut to the National Institutes of Health (NIH), Congress is currently debating actual budgets for the year ahead.
The outcome of the appropriations for next fiscal year and predictable appropriations for future years are vital since cancer research takes many years. While reports vary on the number of times that Thomas Edison “failed” at the light bulb, the number is at least 1000. Edison said he did not fail—he had discovered 1000 ways to not make a light bulb. Cancer research is the same. We experience many failures before we find something that works—but those things that work have improved the 5-year survival of those with a cancer diagnosis from 39% in the 1960s to 69% in 2020 for all cancers combined8 and 91% for breast cancer, specifically.9
In a repudiation of the President’s budget, the Senate released an appropriations bill in August that did not cut NIH funding. On September 2, 2025, the House Appropriations Committee released a budget for fiscal year 2026 that provides flat funding to NIH, an approximate 19% cut to the Centers for Disease Control and Prevention (CDC), elimination of the Agency for Healthcare Research and Quality (AHRQ), and ongoing elimination of diversity and inclusion programs. Research for HIV is completely eliminated, as are programs for contraception services and cancer screening.10 The House version of the bill provides additional support for rural hospitals to reduce imminent closures due to cuts to Medicaid.10 You can read a summary of the House budget here.
But this budget is not set in stone. Congress has until September 30, 2025, to agree on a budget. There will be many amendments over the coming days and weeks. It is important that your representative hears from you about what is critical for you, your patients, and your health system.
Patient navigators can do a lot. The American Association of Cancer Research (AACR) has templates and advocacy tools that navigators can use to contact their representatives and tell them not to cut funding for research. AACR is hosting a rally to save medical research on September 18, 2025. The deadline to sign up for the rally is September 8. They still need residents from Alaska, Arkansas, Hawaii, Iowa, Idaho, Indiana, North Dakota, Nebraska, New Hampshire, New Mexico, Nevada, Vermont, and Wyoming to participate.
You can contact your representative and share your priorities with them. If you are not sure how to contact your representative, you can find them by entering your zip code into the House of Representatives “Find Your Representative” web site. Here are some talking points you can choose from, based on what is most important to you:
There are several organizations that make it easy for you to advocate. You can advocate for cancer research funding through the American Cancer Society Cancer Action Network. The American Medical Association, the American Society of Clinical Oncology, Blood Cancer United (previously the Leukemia and Lymphoma Society), and Susan G. Komen have action networks that navigators can subscribe to for alerts and messaging to legislators asking them to protect cancer access to care and research.
Since Medicaid cuts are scheduled to be implemented in December 2026, navigators can make a huge impact by frequently telling their current legislators to support insurance coverage, quality cancer care, and cancer research and voting for legislators that respond with their support in the November 3, 2026 elections. The November 2026 election will likely be the most influential midterm election in history, since so much is at stake and many people do not vote when it is not a presidential election year. This means every person counts, and your voice could be the difference for your patients in the years to come.
This edition of Navigator Refresh aligns with Standard 16: Advocacy from the Professional Oncology Navigation Task Force (PONT).1
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