Individuals who identify as transgender and non-binary may no longer use their birth or legal name but rather choose a new name that aligns with their identity. When they ask that you use their new name instead, calling them by their old name is referred to as deadnaming and can be a stressful and traumatic experience for the individual and is even considered an act of verbal violence.

Bringing awareness to the importance of mental health care in times of crisis, Admiral Rachel Levine, MD, assistant secretary for health for the U.S. Department of Health and Human Services, traveled to Colorado Springs, CO, to meet with survivors of the November 2022 nightclub shooting and host a crisis mental health roundtable with healthcare providers in December 2022.

More than one billion individuals worldwide have some type of disability, and the population often faces higher rates of cancer, social determinants of health disadvantages, and greater health disparities. They are also more likely to have risk factors associated with a cancer diagnosis and require close care after a diagnosis that accommodates for their disability.

The National Institutes of Health, through its All of Us Research Program, announced in January 2023 research funding opportunities to expand the use of the program’s data to advance precision medicine. NIH allocated up to $4.75 million in fiscal year 2023 for the research grants.

The complexity of cancer care may affect patients’ financial toxicity more than we’ve realized. Many patients struggle with the economic burden of out-of-pocket spending for cancer care, including insurance copayments, transportation, and reduced income, as well as their psychological burden of worry and coping with less funds for food and medications. Multimodality treatments, maintenance and ongoing therapies for metastatic disease, and geographic factors such as travel for clinical trials and specialized services or paying for out-of-network care can put patients’ finances in a deeper hole. The adverse implications are significant: decreased quality of life, increased anxiety and depression, lower adherence to prescribed medications and oncology care, and reduced survival.

Continuing the fight toward health equity, the Centers for Medicare and Medicaid Services’ Office of Minority Health released a report in November 2022 on current progress and future actions to improve health equity data collection.

ONS member Ryne Wilson, DNP, RN, OCN®, care coordinator at University of Minnesota Physicians, joined an expert panel to discuss policy solutions for advancing equitable cancer care for the LGBTQ+ community during the National Comprehensive Cancer Network Patient Advocacy Summit in December 2022. The panel focused on issues affecting LGBTQ+ people with cancer, including homophobia, transphobia, systemic racism, and social determinants of health.

The White House Office of Science and Technology Policy updated policy guidance in August 2022 to allow the average American easier access to publications. The new guidance applies to taxpayer-funded research studies and makes the results publicly available for free.

The Lymphedema Treatment Act, a key piece of legislation for ONS’s health policy priorities, passed the U.S. House of Representatives in November 2022. The bill is now in the U.S. Senate for review along its journey to becoming law.

Along with outlining monetary spending for the upcoming years, the National Cancer Institute’s 2024 annual plan and budget proposal highlights areas of opportunity to advance cancer research, Douglas R. Lowy, MD, who was NCI acting director at the time, said in a September 2022 NCI’s director message.

Under the Inflation Reduction Act, patients will pay lower premiums for the Medicare Advantage and Medicare Part D prescription drug plans during the 2023 coverage year, the Biden-Harris administration announced in September 2022. People with Medicare prescription drug coverage will also receive better and more affordable benefits, including a $35 cost-sharing limit on covered insulin product and coverage for adult vaccines recommended by the Advisory Committee on Immunization Practices.

Since the late 1990s, U.S. Congress has made a concerted effort to increase federal funding for the National Institutes of Health’s (NIH’s) biomedical research and clinical trials. Through rare but always bipartisan largess, legislative appropriators have seen the benefits of investing in the science for precision medicine; supporting genetic-grounded, patient-centered care; and changing the quality and longevity of life for millions of people, including those with cancer diagnoses.

Anthony Fauci, MD, reflected on his career in government and gave insight into what he’s doing next in a statement released in August 2022 addressing his departure from his positions as director of the National Institute of Allergy and Infectious Diseases (NIAID), chief of the NIAID Laboratory of Immunoregulation, and chief medical advisor to President Joe Biden. Fauci served as NIAID director for 38 years and held a career spanning more than 50 years in government service.

As monkeypox continues to spread, the Congressional LGBTQ+ Equality Caucus urged the Biden-Harris Administration in August 2022 to request funding from U.S. Congress to combat the virus.

Sexual dysfunction is one of the most common side effects of cancer treatment, yet oncology professionals often under address patients’ sexuality and sexual dysfunction concerns. Providers cite lack of time, training, and resources as barriers to initiating important discussions about sexual side effects, and studies show that patients’ age and prognosis are additional hindering factors.

Cancer and its treatments can affect a patient’s body in many ways, including sexual function. However, the historical evidence base is focused on cisgender men and their sexual health post-cancer treatment, with sexual health of women and LGBTQIA+ patients largely ignored. I, and many others, are working to change these disparities in research and practice.

Veterans exposed to toxic substances in service will have more access to cancer care and other medical assistance thanks to the recently signed Sergeant First Class Heath Robinson Honoring our Promise to Address Comprehensive Toxics Act. The PACT Act passed with bipartisan effort by Congress in August 2022 and later signed into law.

A new Medicaid health home benefit could improve access to person-centered care management, care coordination, and support resources for children with complex medical conditions and their families—but only if states understand how to opt into offering it. In August 2022, the U.S. Department of Health and Human Services, through the Centers for Medicare and Medicaid Services, released guidelines for states to better understand the benefit and its requirements.

By prohibiting discrimination on the basis of “race, color, national origin, sex, age, and disability,” the U.S. Department of Health and Human Services’ July 2022 proposed rule strengthens Section 1557 of the Affordable Care Act, improving civil rights protections for patients in certain federally funded health programs.

Leita, a 42-year-old patient with locally advanced pancreatic cancer, was treated with 5-fluorouracil, irinotecan, and oxaliplatin followed by capecitabine and radiation therapy. After she completed initial treatment, a computed tomography scan conducted in preparation for a possible surgical resection revealed metastatic liver lesions. Leita’s surgery was cancelled, and she began second-line therapy with gemcitabine and nab-paclitaxel.

In a key step that would expand Medicare coverage for necessary lymphedema compression treatment items, the House Energy and Commerce Committee passed the Lymphedema Treatment Act in July 2022, advancing the bill’s journey to becoming law.

Although they’ve conquered cancer, survivors may develop late or long-term physical, psychosocial, practical, or spiritual effects from the disease or its treatment. For example, patients with breast cancer who have completed surgery, radiation, or chemotherapy should be monitored for recurrence, lymphedema, osteoporosis, and cardiac, hormone-related, and sexual issues.

Pending legislation would help residents save on prescription drug costs by empowering Medicare to negotiate lower drug prices, capping out-of-pocket costs, and limiting pharmaceutical price increases to the rate of inflation, U.S. Senator Jack Reed (D-RI) said during a discussion with a plethora of healthcare professionals, including ONS member Heather Murphy, MSN, FNP, OCN®, president of the ONS Rhode Island and Southeastern Massachusetts Chapter, about rising prescription drug prices at a Rhode Island conference in July 2022.

A person’s zip code often matters more than their genetic code when it comes to their health. Where we live and work, how connected we are in our community, and how much support we have are core social determinants of health that also significantly affect cancer health outcomes.

To improve cancer care and lower costs, the Centers for Medicare and Medicaid Services created the Enhancing Oncology Model in June 2022.

For the past 244 years, the world has envied the Great American Experience. Civics 101 class equipped us with the U.S. checks and balances system’s elementary pillars:

• Government has three equal branches: executive (the president), legislative (the congress), and judiciary (the courts).
• When legislative laws are disputed, the judicial system interprets a law’s constitutionality.

Healthcare professionals are called to provide patient-centered care in an environment where they listen to patients’ goals and desires and support patient autonomy. However, heeding that call requires patients’ participation to voice their needs and concerns, and some patients may be reluctant to speak up for themselves.

We’ve made incredible progress against tobacco’s reign over youth, but the battle is far from over. Tobacco use is responsible for the death of nearly half a million Americans and more than 8 million people worldwide each year.

Propensity to adhere to cervical cancer screening recommendations varies widely by sexual orientation, researchers reported in study findings published in Cancer. They found that those in sexual minority groups are nearly 50% less likely to have ever undergone a Pap test.

To improve safety and regulation for drugs and devices, U.S. Senators Patty Murray (D-WA) and Richard Burr (R-NC) introduced the Safety and Landmark Advancements (FDASLA) Act in May 2022. The act reauthorizes and builds on the U.S. Food and Drug Administration’s (FDA’s) prescription drug, generic drug, biosimilar, and medical device user fee agreements.

Symptom assessment gives oncology nurses a consistent matrix to directly evaluate the significance that symptoms have on patients’ distress, quality of life, and survival. Both symptoms and their impact can evolve throughout a patient’s cancer course, making high-quality and detail-oriented assessments an essential tool for successful treatment and management.

With the relaunch of the Biden-Harris administration’s Cancer Moonshot initiative, the fight against cancer is back in the government spotlight. To support the Moonshot’s goals, in May 2022 the U.S. Department of Health and Human Services (HHS) allocated $5 million to the Health Resources and Services Administration-funded community health centers.

Patients with cancer and other healthcare consumers would receive reinforcements in the fight against financial toxicity with new legislation that would “empower the Federal Trade Commission (FTC) to increase drug pricing transparency and hold pharmacy benefit managers (PBMs) accountable for unfair and deceptive practices that drive up the costs of prescription drugs.” U.S. Senators Maria Cantwell (D-WA) and Chuck Grassley (R-IA) introduced the proposed bill in May.

Samuel, a 55-year-old patient with a history of T3N1M0 oropharyngeal HPV+ cancer on the base of his tongue, underwent surgery followed by 70 Gy of intensity-modulated radiation over seven weeks with concurrent weekly cisplatin. He responded well and had a positron emission tomography (PET) scan three months post-treatment that showed no cancer. Two months later, Samuel calls the triage line to report swelling on the left side of his neck, the same area where he first noticed a lymph node that led to his initial diagnosis.

Driven by the reignited Cancer Moonshot, the National Cancer Institute (NCI) hosted a virtual roundtable discussion on the possibilities and challenges of increasing clinical trial accrual in May 2022.  

Highlighting the most prominent barriers that people accessing care face and the influencers acting on providers, the Centers for Medicare and Medicaid Services (CMS) unveiled in May Chronic Pain Experience Journey Map. The map came out of the work done under the 2019 Chronic Pain Stakeholder Engagement initiative to explore the serious role chronic pain has in patients’ lives.  

The Palliative Care and Hospice Education and Training Act (PCHETA), an ONS health policy priority that supports both patients and the profession, returned to the U.S. Senate floor in May 2022. Senators Tammy Baldwin (D-WI) and Shelley Moore Capito (R-WV) reintroduced the bill to improve and sustain the workforce and the well-being of patients and their families with life-threatening illnesses.  

Various patient groups, including children, racial and ethnic minorities, and low-income populations, may need more specialized healthcare services than others, particularly during a cancer journey.

A pandemic is not the time to experiment with Medicaid work requirements, the Biden-Harris administration maintained in April 2022 when it urged officials in Arkansas and New Hampshire to cancel their U.S. Supreme Court hearing appeals regarding the Trump administration orders and send the matter back to the U.S. Department of Health and Human Services (HHS) for further action.

Amid its celebration of Black Maternal Health Week in April 2022, the U.S. Department of Health and Human Services (HHS) raised awareness of a sobering fact: Black maternal mortality and morbidity are a healthcare crisis throughout the United States.

An April 2022 Biden-Harris administration executive order on Continuing to Strengthen Americans’ Access to Affordable, Quality Health Coverage will protect and strengthen the Affordable Care Act (ACA) and Medicaid. The order directed federal agencies and departments to review existing language and correct regulatory wording that might be inconsistent with the goals of offering more affordable access to health care.

Among the first set of nearly 100,000 whole genome sequences from participant partners in the National Institutes of Health’s (NIH) All of Us Research Program, “about half come from people who self-identify with a racial or ethnic minority group,” Joshua Denny, MD, MS, All of Us chief executive officer, and Lawrence Tabak, DDS, PhD, NIH acting director, said. “That’s extremely important because, until now, over 90% of participants in large genomic studies were of European descent. This lack of diversity has had huge impacts—deepening health disparities and hindering scientific discovery from fully benefiting everyone.”

Virtual appointments and other telehealth care allow patients and families to have ready access to cancer care from the comfort of their own home, Kevin M. Curtis, MD, medical director of the Center for Telehealth at Dartmouth-Hitchcock Health, said in a March 2022 National Cancer Institute (NCI) blog post praising the service. Curtis also highlighted telehealth’s role in addressing health disparities, its high satisfaction rate with both patients and clinicians, and the service’s future in cancer care research.

People from all major racial and ethnic minority population groups in the United States report experiencing more COVID-19–related discrimination than White adults, including being threatened or harassed based on a perception of having COVID-19, according to results from a new study funded by the National Institutes of Health (NIH).

President Joe Biden released the National COVID-19 Preparedness Plan in March 2022, enabling the United States to move forward with goals to protect against and treat COVID-19, prepare for new variants, prevent economic and educational shutdowns, and expand vaccinations.

Systemic racism persists throughout today’s society, presenting barriers to basic human rights and services, including quality health care for millions of people. Overcoming those disparities and achieving social justice require advocacy from all—but especially nurses.

Carole Johnson returned to the U.S. Department of Health and Human Services (HHS) as the new administrator of the U.S. Health Resources Services Administration (HRSA) in December 2021. Johnson, who previously served as testing coordinator for the White House COVID-19 response team before being replaced by HHS’s Tom Inglesby, expanded access to health services in New Jersey as the state’s human services commissioner.

A new risk model tailored for Black patients predicts their risk of developing breast cancer as accurately as current models for White patients, researchers reported in the Journal of Clinical Oncology. Because Black patients are more likely to be younger at diagnosis, present with aggressive or advanced cancer, and die from the disease than other racial and ethnic groups, using the new model to personalize prevention and screening recommendations may reduce those disparities.

Advancing equity, justice, and opportunity for Asian American (AA) and Native Hawaiian and Pacific Islander (NHPI) communities in the United States requires an ambitious, whole-of-government agenda, the U.S. Department of Health and Human Services (HHS) announced in December 2021. To drive that agenda, the agency launched the Biden-Harris administration’s White House Initiative on Asian Americans, Native Hawaiians, and Pacific Islanders (WHIAANHPI).

Patients now have protection against unexpected—and often extraordinarily high—medical bills. On January 1, 2022, the Biden-Harris administration’s bipartisan No Surprises Act went into effect to ban surprise billing in private insurance for most emergency care and many instances of nonemergency care, according to the U.S. Department of Health and Human Services (HHS).