As an oncology advanced practice nurse and administrator for cancer services, every day I care for patients and caregivers coping with cancer. I mentor nursing staff in best practices to deliver care, and I create a work environment conducive to advancing quality cancer care. However, my commitment to supporting people with cancer does not end at the walls of my workplace.  Oncology nurses are called to be a visible change agent in our communities—and beyond—to continue the worthy work of championing quality care for people diagnosed with cancer, along with spreading prevention and early detection information.

The U.S. Food and Drug Administration’s (FDA’s) mission is primarily to protect the American public by regulating the sale and development of consumer items like cosmetics, food, tobacco products, medication, and much more. However, a lesser known arm is FDA’s Oncology Center of Excellence, established to further prevention, detection, patient-centered research, and cancer-specific education.

Developed to combat the nation’s opioid crisis, a comprehensive opioid addiction bill has finally made its way to the president’s desk. On October 25, 2018, President Trump signed the opioid package into law. The new law allots more than $8 billion to address addiction, drug trafficking, and recovery issues. 

When Senator John McCain (R-AZ) passed away in August 2018 from aggressive glioblastoma just one day after his family announced he stopped treatment, it put a poignant highlight in Washington on a need of which oncology nurses are far too aware: palliative care and hospice. Ideally, palliative care begins at the time of a cancer diagnosis and is aimed at managing symptoms throughout the cancer journey. Hospice begins when a patient’s prognosis is six months or less, yet in most cases, as McCain’s illustrates, patients begin hospice far too close to death. Many point to a lack of awareness and education—for patients and the public as well as oncology nurses and other palliative care providers.

As the Affordable Care Act is challenged in court, 12 Republican Senators signed a letter insisting that pre-existing conditions be covered in any new healthcare laws moving forward. Despite initial praise for the GOP, many patient advocacy groups, including the American Cancer Society Cancer Action Network, have voiced concerns about the efforts being far too little and far too late. On September 4, 2018, more than 25 patient advocacy groups came together and released a statement condemning a recent Republican bill stating it didn’t provide enough protections for pre-existing conditions, compared to what’s currently covered under the ACA. The advocacy groups noted the bill's outlying weaknesses and pushed for stronger reassurances.

As an oncology nurse, I’m grateful to work alongside so many colleagues who bring dedication, grace, and skill to their work. No other industry in the world shares the same frustrations or emotional tolls as nursing, but we continue to bring enthusiasm, optimism, and devotion to our daily work. Nurses strive to ensure the best for their patients. It’s the call to patient advocacy that is at nursing’s core.

On March 6, 2018, 23andMe—an at-home genetic testing company—announced their direct-to-consumer genetic test (DTCGT) would include DNA results for the three common founder BRCA mutations commonly seen in people with Ashkenazi Jewish ancestry. This was big news because DNA results for the BRCA mutations had been previously available on the 23andMe panel report until the U.S. Food and Drug Administration removed them in 2013.

Imagine being in a hospital, unable to verbally communicate and having to find a way to get across your basic human needs. As oncology nurses, we take care of a variety of different patients: some able to make their needs known and some who unfortunately cannot.

Financial toxicity in cancer care is an increasingly recognized burden for many patients. Driven by many factors, financial toxicity is often a combination of a patient’s individual characteristics, the costs associated with care, and the overall impact of the illness on a patient’s ability to work throughout the cancer journey. Financial toxicity negatively impacts patient outcomes, and many patients struggle with costs regardless of whether they’re covered by health insurance—this includes undocumented immigrants. Currently, more than 11.1 million undocumented immigrants live in the United States, and they aren’t immune to cancer diagnoses.

On May 7, 2018, the White House told the Department of Health and Human Services to overturn Kansas’s new lifetime limit restrictions on Medicaid. Kansas has been leading the way for states looking to implement restrictions to federal benefits. The state previously implemented work requirements for Medicaid recipients and was trying to impose time limits for how long recipients could receive Medicaid for some time. Had its efforts stood, this would mark a fundamental shift in how the federal program is implemented at the state level.

I was selected to represent ONS as a panelist at the Cancer Innovation Coalition meeting held in Washington, DC in February 2018. The meeting, “Integrating Patient Perspective into Clinical Pathways: A Dialogue Between Stakeholders,” brought together patient advocates, healthcare professionals, and technology stakeholders to address and identify the importance of patient-centered care and involving patients in clinical pathways. The National Patient Advocate Foundation released an article outlining the topics covered in our discussion.

It’s beneficial to think about financial toxicity in terms of issues adhering to treatment. Mounting evidence suggests that patients with financial toxicity aren’t adhering to their cancer care. It’s becoming a common side effect of cancer treatment, and patients might be less likely to take treatments their medical team prescribes because of it, leading to substandard care.

The cost of health care in the United States has been the source of debate for years. Questions range from the extent of Medicare and a Medicaid coverage, how—or if—the government should regulate drug prices, who deserves coverage, and how Institutions collect payments from insurance companies. But often, one important aspect is missing from the numerous conversations on health care, treatments, and financial reimbursements: the patients.

Specialized Knowledge: Quality Care. This is my ONS presidential platform. In several columns, I have discussed how ONS resources can provide you with the specialized knowledge and expertise to provide quality care. This issue, I’d like to focus on quality care.

After failing to garner support for the GOP’s healthcare bill in the Senate—known as the Better Care Reconciliation Act of 2017—Senate Majority Leader Mitch McConnell (R-KY) noted that the next strategy for repealing and replacing the Affordable Care Act (ACA) would be to repeal the legislation without any concrete healthcare bill to replace it. In 2015, the Senate already successful voted to repeal the ACA, but it was vetoed by former President Obama. According to McConnell, the 2017 repeal effort would provide a two-year window to ensure a stable transition.

Earlier in 2017, a group of 12 nurses traveled to Cuba to learn about cancer care and the healthcare system there. Cubans are very proud of their healthcare and educational systems, which are offered without charge to their citizens. We learned so much on this trip, but my take-home message from this experience was the importance of prevention and early detection.

Two members of the House of Representatives have put political party differences aside and introduced bipartisan legislation that requires health insurers to cover traditional chemotherapy, along with oral medications associated with cancer treatment. U.S. Representatives Leonard Lance (R-NJ) and Brian Higgins (D-NY) have proposed the Cancer Drug Parity Act (H.R. 1409). The intent of the bill is to ensure appropriate oncologic treatments are affordable and covered for patients with cancer.

Imagine a situation where a patient’s tumor cells were used for countless scientific experiments—without the patient’s informed consent. Safeguards are in place today to prevent such an ethical breach, but in 1951 Henrietta Lacks and her family weren’t as lucky. Author Rebecca Skloot shared Henrietta’s story in a 2010 nonfiction book, The Immortal Life of Henrietta Lacks, that was adapted into a movie released on April 22, 2017.

As an ONS member, I participate in the Bipartisan Policy Center and represent oncology nursing in dialogue and advocacy regarding health policy topics that are at the forefront of cancer care.

Oncology nurses are often called on to act as mediators through difficult moments, advocating for their patients while connecting caregivers with the resources that will help them during a challenging time.

In his last state of the union address of his presidency, on January 12, President Obama announced a new “moonshot” funding plan and asked Vice President Biden to lead the initiative to eliminate cancer as we know it. Some of us remember the original moonshot funding request made by President Kennedy, almost 55 years ago, to put a man on the moon before the decade ended and other initiatives. The cancer moonshot goal is to achieve a decade’s worth of advances in five years. Critical to this happening is the elimination of siloes.

Navigating the healthcare system as a patient with cancer, with multiple treatment options, frequent appointments, diagnostic tests, new medications, and insurance complications, is confusing and can become overwhelming. Advocacy is one crucial role a nurse fulfills, providing education and support to assist patients with making decisions and managing their condition.