On March 26, 2019, more than 40 nurses came together at the Maryland General Assembly’s Senate President’s Conference Center for the Oncology Nurses Night in Annapolis. This was the Greater Baltimore Chapter of ONS’s (GBCONS’s) third advocacy trip to the statehouse, but it was the first statewide ONS event. All four Maryland chapters were active in planning the night, and many new advocates were inspired to speak out.

Oncology nurses advocate for their patients every day, and it’s easy to see firsthand the difference it can have in those patients’ and families’ lives. But there’s a way to make an even larger impact by using those same advocacy skills at the local, state, or even national level—potentially changing thousands or even millions of lives of patients, survivors, and families across the United States.

Washington is the first state in the country to offer a public insurance option to its residents after Governor Jay Inslee signed the bill into law on May 13, 2019. Is it any coincidence that Inslee is also running for president? Coming from a traditionally “blue” state with a strong progressive legislature allowed this Democratic candidate to deliver on a particularly interesting policy.

After recent a best-selling book-turned-movie detailed her story, Henrietta Lacks’ extraordinary impact on cancer research continues to become common knowledge to more people. However, many more are still unaware of how her story, struggle with cancer, and tumor cells changed the face of cancer care. For that reason, Representative Elijah Cummings (D-MD), along with a congressional delegation from both chambers, introduced legislation to both honor her role in history and improve access to medical research to traditionally underrepresented groups.

Advocacy is a pillar for both ONS and me, personally. As a professor, organizer, chapter leader, and now ONS president, engagement in oncology nursing issues is an essential part of what I do and who I am. In March 2019, I accompanied ONS staff along with my ONS Pittsburgh Chapter colleague, Grace Campbell, PhD, MSW, RN, CRRN, assistant professor at the University of Pittsburgh, to meet with Congressional Representative Connor Lamb’s (D-PA) district office director.

In a bold move, Senate Majority Leader Mitch McConnell (R-KY) announced on Thursday that he would put forward a bill to raise the national age for tobacco product purchases to age 21. It’s a remarkable move on many levels, not the least of which is that McConnell is from Kentucky—a region of the country that produces tobacco products. More importantly though, McConnell made a public statement about the rise in youth consumption through vaping.

For more than five years, the cancer advocacy community—along with the larger healthcare environment—has presented and promoted a comprehensive piece of legislation focusing on patient-centered care, palliative care training, and hospice education. Advocates are familiar with the Palliative Care and Hospice Education and Training Act (PCHETA)—an initiative that contains many of ONS’s policy priorities and one that ONS members have lobbied for on Capitol Hill.

Each spring marks a new budget season in Washington, DC. It’s a time of year that provides a glimpse into policy priorities for the fiscal year. In March 2019, the Office of Management and Budget released its 2020 funding allocations for the entire federal government. The budget was comprised after each federal department spent the preceding months looking at their previous year’s budget and outlined programmatic priorities that align with the president’s agenda.

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.

In early January 2019, I had the opportunity to represent ONS before the Virginia State Senate Finance Committee on the growing epidemic of electronic cigarettes and vaping device use among youth. In Richmond, VA, I delivered testimony about the dangerous health ramifications of this newer trend of tobacco use.

When heads of federal regulatory agencies are health and medical professionals with years of research experience, their background helps guide the mission and vision of the department along with the direction of thousands of staff and employees engaged in implementing health policy. U.S. Food and Drug Administration (FDA) Commissioner, Scott Gottlieb, MD, is a clinician and activist, and he acts as a staunch advocate for public health issues—namely the dangers of tobacco use, especially among young Americans.

How often have you gone to the mailbox, pulled out your latest issue of the Oncology Nursing Forum or Clinical Journal of Oncology Nursing, and excitedly read about some innovative study with game-changing outcomes that’ll revolutionize the delivery of health care—only to find that it never moves off the pages of the journal? What does it take to move research from the proverbial bench to the community? That was the focus of the Fourth Annual Meeting of the Patient Centered Outcomes Research Institute (PCORI), “From Evidence to Impact: Putting What Works into Action,” held from October 31–November 2, 2018, in Washington DC. 

On January 3, 2019, the newly elected, Democrat-controlled House of Representatives introduced legislation to reopen the federal government and end the current shutdown. It’s not about the money, which is usually the case; it’s about the blame. The border wall funding—in whatever capacity—is politically driving the shutdown. But Senator Mitch McConnell (R-KY) doesn’t want to take up a Democrat-sponsored bill that he knows the president will veto. Democrats want that to happen to force the president to either accept the blame for the shutdown or to cave without funding for the wall and reopen the government.

Election results may appear to be seismic shifts, jarring the foundations of the American political system to its core as voters stare in disbelief, attempting to translate the meaning of the public’s intent. But is that really the case?

Before the hustle and bustle of the holiday season, I wanted to thank you, our ONS members, for advancing the voice and contributions of oncology nurses to critical issues in cancer care.

Nurses should initiate financial conversations with patients early and offer resources to improve access to cancer care, speakers at the ONS Center for Advocacy and Health Policy’s third annual policy summit on November 13, 2018, concluded. The event, held at the Hyatt Regency Hotel on Capitol Hill in Washington, DC, brought together nurses and industry and government experts to address the issue of financial toxicity in today’s cancer care.

As a staunch advocate for the advancement of cancer treatments, research, and patient care, President George H.W. Bush left an enduring legacy through contributions to the field of oncology and health care in the wake of his death on November 30, 2018. His continued support of healthcare professionals—including oncology nurses—spoke to his administration’s focus before, during, and after his tenure in Washington, DC.

Washington insiders weren’t surprised by the election’s outcome, and the next session of Congress will be something to watch in 2019. However, the current work of politics in a lame duck session can be interesting at best and potentially dangerous at worst. Members of Congress who lost their seats are now under no obligation to their districts, leadership, or party and often vote their conscience on late-session bills.

After an arduous campaign season, the midterm election results are mostly as anticipated. The Democrats gained seats in the House of Representatives, giving the party the majority in the lower chamber starting in January 2019. The Dems say their focus for the next congressional session will focus on health policy and high drug prices. Although the jury is still out over what the midterm elections meant, most experts agree that health care was the driving political issue for voters, regardless of party.

On September 12, 2018, I had the honor of attending the Nursing Community Coalition’s (NCC’s) 10th Anniversary Celebration as an ONS representative, joining members of ONS’s health policy staff. NCC is a 61-member coalition, working to further nursing education, training, and support through united advocacy efforts.

ONS, like so many membership organizations with dedicated healthcare interests, oils the gears that move the public policy machine forward. Each shift represents another opportunity for success. One such tactic is working in coalitions, and ONS is a vital member of health advocacy groups in Washington, DC, usually as the only nursing society at the table.

As the U.S. government’s arm of patient-centered research, the Patient-Centered Outcomes Research institute (PCORI) is driving new initiatives and opportunities focused on unlocking novel treatment methods and cutting-edge interventions to better care for patients. On September 24, 2018, PCORI announced its new Board of Governors, naming ONS member Christopher Friese, PhD, RN, AOCN®, FAAN, as the agency’s first nursing research representative to hold a seat on the board.

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.

In May 2018, I participated in the American Cancer Society’s (ACS’s) Cancer Action Week in my role as a legislative volunteer for ACS’s Cancer Action Network (CAN). In this role, I advocate on the state level for various key legislative efforts for people with cancer in New Jersey.

’Tis the season. Well, at least in DC, it’s an exciting time. A political year. A long summer recess. A host of bills that are on the verge of passing. We are all aflutter with anticipation of the possibilities. But legislators need to remember who sent them to Washington and for what reason. Advocacy begins at home, and elected officials are heartened by what their constituents request, especially when that legislation is bipartisan and emotional and can affect people’s lives.

On June 27, the House Energy and Commerce Subcommittee on Health passed by voice vote two health bills that have been among ONS’s top legislative priorities: the Palliative Care and Hospice Education and Training Act ([PCHETA], H.R. 1676) and the Title VIII Nursing Workforce Reauthorization Act (H.R. 959). The bills are now poised for consideration by the full House Energy and Commerce Committee.

Recently, immigration policies have come front and center in the news. The issue of separating children from their parents at the border was elevated to a public health issue, as the American Academy of Pediatrics—among other healthcare organizations—decried the Trump administration’s policies, noting the potential for irreparable harm to children. ONS was one of the many provider groups that sent formal letters to the Department of Homeland Security, encouraging change to immigration policies that separate children from their parents.

In our nation’s capital, healthcare policy meetings occur weekly for various government and private organizations whose aim is to improve care and conditions for patients with cancer. The ONS National Capital Chapter members are involved in lobbying on the Hill and attending meetings about improving cancer care through the ONS Capitol Hill Gang.

In today’s increasingly fractured political environment, with heightened partisanship, Washington, DC, has become toxic. New ideas and common-sense solutions are rare and promoting issues without politicization is literally a full-time job. Interest groups are now finding policy opportunities for success in the state capitals. Some advocacy initiatives have found easier, and faster, wins for their organizational efforts at the state legislature level.

ONS President Susan Schneider, PhD, RN, AOCN^®, FAAN, was appointed to the Biden Cancer Initiative board of directors, among other experts in health care, business, finance, and technology. The Cancer Initiative also named ONS Chief Executive Officer Brenda Nevidjon MSN, RN, FAAN, to its advisory committee, comprised of 25 other experts aiming to transform the way cancer is detected, diagnosed, and treated by implementing new solutions to complex healthcare problems.  

The U.S. Congress continued its budget pattern in February, enacting another extension of the 2017 budget agreement into law on February 8, 2018. The current iteration of the budget law will raise caps on defense and non-defense spending over two years and keep the federal government running through March 23, but more importantly, it includes the following provisions of special interest to ONS.

Each day, more than 175 Americans die from an opioid-related overdose. Misuse of, addiction to, and overdose from opioids cost the United States $78.5 billion a year, “including the costs of health care, lost productivity, addiction treatment, and criminal justice involvement.”. Other alarming numbers abound: 21%–29% of patients who are prescribed opioids misuse them, 4%–6% of those transition to heroin, and 80% of people who use heroin first misused prescription opioids.

Thousands of pieces of legislation are introduced in each Congress, but only a small percentage make it through the entire process, especially in that first year. Bills that are not voted into law and signed by the president during that two-year period “die” when the second session is completed and Congress adjourns. According to congressional rules, “A bill may be introduced at any point during a two-year Congress. It will remain eligible for consideration throughout the duration of that Congress until the Congress ends or adjourns sine die.”

Breakthroughs and advancements in research and management have significantly changed the ways we understand how cancer works and how best to treat it. Recently, the Centers for Disease Control and Prevention (CDC) released its Annual Report to the Nation on the State of Cancer.

On November 3, 2017, the House of Representatives passed HR 3922, the Championing Healthy Kids Act, which reauthorizes the Children’s Health Insurance Program (CHIP) program for an additional five years. The act also reauthorizes public health programs. Previous funding for the CHIP program had expired September 30, 2017.

The Centers for Medicare and Medicaid Services (CMS) finalized a rule on November 1, 2017 that would reduce the current Medicare Part B drug payment to 340B hospitals from average sales price (ASP) plus 6% to ASP minus 22.5%.  However, rural sole community hospitals (SCHs), children’s hospitals, and PPS-exempt cancer hospitals are excluded from this payment adjustment in 2018.

In May 2017, Scott Gottlieb, MD, was named as the newest U.S. Food and Drug Administration (FDA) commissioner. He’s since shown a commitment to regulating tobacco and nicotine delivery systems—such as e-cigarettes—especially when it comes to children. In one of his public forums, Gottlieb spoke about the FDA’s commitment to continued oversight and regulation of these products and their distribution, a stance that’s drawn support from the medical community.

As part of its mission, ONS honors and maintains nursing’s historical and essential commitment to advocacy for the public good. Working collaboratively with policymakers, cancer and nursing community advocates, and other stakeholders at the local, state, federal, and international levels, ONS seeks to integrate the nursing perspective throughout the policymaking process and urges that oncology nurses be appointed to all relevant federal panels, committees, commissions, and boards. During its September conference call, the ONS Board of Directors focused on two key areas of ONS advocacy.

Former Speaker of the U.S. House of Representatives Tip O’Neill was fond of saying, “All politics is local.” What he meant was, if an elected official took care of the constituents back home, then whatever happened in Washington, DC, wouldn’t matter as much. Whatever issues most affected voters in the legislative district, then that is where members of Congress should spend their time.

On August 21, 2017, ONS submitted comments to Centers for Medicare and Medicaid Services Administrator Seema Verma, opposing the agency’s proposed policy to include Medicare Part B drugs in the calculation of Merit-Based Incentive Payment System (MIPS) payment adjustments.

ONS joined the Patient Quality of Life Coalition (PQLC) in signing a final comment letter to the Centers for Medicare and Medicaid Services (CMS) administrator, Seema Verma, on the agency’s proposed 2018 updates to the Quality Payment Program, CMS-5522-P. PQLC, which represents patients, health professionals, and healthcare systems, advocates for palliative care for patients and families facing serious illness.

As a national nursing organization with a specialty in cancer care, ONS occupies a unique space in the healthcare public policy environment. When nurses speak, decision makers listen, because nurses are the most trusted healthcare providers. This is not an insignificant fact to those who decide how to implement health policy decisions through law and the regulatory system.

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.

Budgets are political documents. When we look at a spreadsheet, for many of us the numbers are jumbles and the lines begin to blur. But reviewed closely, budgets are the prioritization of federal policy.

On June 12, 2017, President Trump named Norman Sharpless, MD, as director of National Cancer Institute (NCI). Sharpless, formerly the director of the Lineberger Comprehensive Cancer Center at the University of North Carolina, is a practicing oncologist and cancer researcher. He will take over as for Doug Lowry, MD, who has been the NCI’s acting director since 2015.

There is a difference between campaigning and governing. Running for office is about putting out bold ideas and galvanizing a base of supporters who are energized by the opportunity for real change. It’s exhilarating and fluid. The momentum can be like a rock concert, and people are carried away with excitement about the future.

As the largest healthcare profession and the one most trusted by the public in the annual Gallup survey, nurses have the power to improve the health of communities throughout the country by bringing their expertise into the boardroom. However, we are an absent voice in so many of those boardrooms.

The National Institutes of Health (NIH) recently released the Annual Report to the Nation on the Status of Cancer, 1975–2014. According to the report, cancer death rates fell for 11 of the 16 most common cancers in men and 13 of the 16 most common cancers in women. Death rates fell for female breast cancer, lung cancer, colorectal cancer, and prostate cancers, among others. The report also notes that incidences of cancer decreased in men but plateaued for women in the same time period.

On March 15, 2017, the Trump administration released its first budget proposal, slashing federal spending in many areas of health care, education, environmental protection, and the sciences while increasing funding for defense and homeland security. The proposed budget would decrease spending for the Department of Health and Human Services by nearly 18%, which includes a 20% budget cut for the National Institutes of Health (NIH)—a decrease of nearly $6 billion. This stands to impact a number of cancer-related research programs developing new treatments and drugs through NIH funding.

On March 8, 2017, House Speaker Paul Ryan announced the American Health Care Act (AHCA), the Republican replacement plan for the Affordable Care Act (ACA). The AHCA is becoming known to many on Capitol Hill as Trumpcare, and it’s already facing stiff opposition from Democrats and Republicans alike. Many conservative Republicans are calling it Obamacare 2.0 and expected a full repeal of the ACA. Moderate Republicans are unlikely to support the bill, because it could potentially strand millions without insurance coverage provided by the ACA.