Government service isn’t forever. Dynamic, transformative leaders enter and leave federally appointed positions for a variety of reasons and new appointments. Such was the case for the National Cancer Institute’s (NCI’s) former director Norman Sharpless, MD, who was appointed to head the U.S. Food and Drug Administration in April 2019 after Scott Gottlieb, MD, announced he would step down as of June 2019.

In a move that echoed the Department of Justice’s (DOJ’s) previous stance on the Affordable Care Act (ACA), the Trump administration’s DOJ announced it was siding with a lower court’s ruling that stated ACA was invalid and unconstitutional. Siding with conservative state attorneys general who sued and won a lower federal court judgment on the constitutionality of law, DOJ issued a terse, two-sentence letter supporting the judge’s decision to strike the law down.

On January 25, 2019, President Trump announced a deal to end the longest U.S. government partial shutdown in history—35 days of closed public places and programs, furloughed or unpaid federal employees, and an apprehensive American nation. What was its impact on health policy and, more specifically, cancer care?

Pediatric cancers have more than an 80% overall cure rate, and that, at first glance, seems like something to celebrate. However, in terms of lives lost to different pediatric cancers, the American Cancer Society estimated that more than 1,100 children under the age of 15 will die from their disease in 2019—roughly one in five children diagnosed. Although survival rates are improving in cancers like acute lymphocytic leukemia and Hodgkin lymphoma, other childhood cancer types haven’t seen increased survival since the early 2000s.

Race and economics are still driving cancer treatment and survivorship, ONS member Janice Phillips, RN, PHD, FAAN, explained in her article, “Unfair Diagnosis: Socioeconomic Gap Drives Cancer Outcomes,” published in January 2019 in Scientific American.

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?

Since 2016, ONS has gathered hundreds of nurse advocates in the nation’s capital to speak truth to power during its annual Hill Days conference. This two-day meeting brings more than 100 oncology nurses to Washington, DC, to learn about the Society’s health policy legislative agenda and to be trained in how to educate elected officials on the priority issues most important to ONS members.

A billion dollars was once an astronomical amount of money to spend on one federal agency. But since the 1950s when Senator Dirksen (R-IL) was a leading voice for fiscal conservatives, the federal government’s budget has ballooned, with both political parties equally responsible for increases. During this time, great achievements have been made, and much of it in biomedical research at the National Institutes of Health (NIH), as what former Senator Arlen Specter (R-PA) often referred to as the crown jewel of the federal government.

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 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.

The Biden Cancer Summit was held in Washington, DC, on September 21, 2018. The day-long event was filled with cancer-related educational sessions—some hosted by ONS leadership—discussing ways to move cancer research and care forward. Formerly dubbed the National Cancer Moonshot Initiative, the country-wide effort to make a quantum leap in cancer care has evolved in into the Biden Cancer Initiative (BCI). BCI’s ongoing work will continue to break down barriers and help providers and researchers overcome obstacles as they work toward progress in cancer care.

’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 July 23, 2018, the U.S. House of Representatives passed by voice vote two ONS priority bills that would provide palliative care training, awareness, and research and funding to build the nursing workforce.

Through tremendous bipartisan support, the House of Representatives passed comprehensive opioid legislation to address the national abuse epidemic in the United States on June 22, 2018. For many healthcare advocates, an opioid legislation package has been a long time coming. The opioid crisis has been in the news since before the 2016 presidential election but was brought to the forefront during that campaign.

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.

April is designated as National Cancer Control Month in the United States. It’s a federally endorsed observation, annually encouraged by a proclamation from the president. April is dedicated to raising awareness for cancer prevention and treatment throughout the country. Approved through a joint resolution by Congress in 1938, the yearly presidential announcement serves as a reminder to all Americans that awareness of the factors that cause or prevent cancer are crucial to the public health.  

At the center of the President Lyndon B. Johnson’s great society was Medicare, a federal program designed as a partial safety net primarily for America’s older adults. It was signed into law on July 30, 1965. Controversial at the time, it is now sacrosanct and often referred to as the “third rail of politics”: touch it and die.

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.

Presidential appointees come, and presidential appointees go. Recently, the Center for Disease Control and Prevention’s (CDC’s) director resigned for financial conflicts of interest. The new Department of Health and Human Services (HHS) secretary, Alex Azar, sought to fill the important public health role as soon as possible. With opioids, the flu, vaccine shortages, and cancer prevention under the purview of the CDC, finding a new director was crucial to continuing the agency’s work. Since many of the CDC’s top officials are often reported on in the news, replacing the director was also essential for public trust in public health.

Legislation ushering experimental drugs and treatments to patients without U.S. Food and Drug Administration (FDA) approval hit a snag on March 13, 2018, after it failed to garner enough votes in the House of Representatives. The right-to-try bill, a priority for the Trump administration, didn’t accrue the two-thirds majority vote needed to pass it along to the Senate. Lawmakers opposed to the bill had lingering questions about the safety concerns connected to bypassing FDA regulations for patients searching for new treatments. Patient advocacy groups have been speaking out against tenets of the bill, expressing concern for removing the FDA from the process.

We live in the greatest age of scientific discovery and medical breakthroughs. Advances in the innovation and understanding of diseases are providing more insight into how we treat, and often cure, people with life-threatening illnesses. What was once deemed a death sentence diagnosis is now described as a chronic disorder, that can be handled with the help of the patient and a team of healthcare providers.

To ensure more Americans understand the public health implications of cancer, the Centers for Disease Control and Prevention (CDC) is taking an active role in creating awareness activities. By posting commonly asked questions, the CDC hopes to demystify cancer and its treatment to the uninitiated, while also helping survivors and caregivers better comprehend the cancer journey.

On February 14, 2018, Valentine’s Day, I had the honor of representing the ONS at the Congressional Families Caucus with Alec Stone, ONS director for public affairs, who made the connection between Congressional Families and ONS. The Congressional Families Caucus is made up of spouses of congressional members serving in the House of Representatives and Senate.

Putting together the federal budget is an arduous task. Department by department, suggestions for program funding increases and decreases are reviewed, discussed, analyzed, and submitted. Budget officials are trying to match the administration’s priorities and review the fiscal environment, not to mention craft spending items to gain support from congress, who ultimately votes on the budget.

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.

The federal government structure in Washington, DC, is hard to ignore. U.S. children are taught about it in schools, and we hear about it regularly as elections, legislation, appointments, and the like are discussed in the news. Less recognized, though, is that each state has a similar legislative structure.

To plan for a strong future, one must understand the past. Reviewing the previous year’s accomplishments is always a good policy for reflection and improvement. It can help remind us of the accomplishments achieved in 12 short months. Such was the case at the National Institutes of Health (NIH), as director Francis Collins addressed the research achievements for 2017 in his opening blog.

The American Cancer Society has partnered with the Centers for Disease Control and Prevention (CDC) to promote public awareness and adoption for the human papilloma virus (HPV) vaccine. The joint initiative, dubbed the National HPV Vaccination Roundtable, brings together public, private, and voluntary experts to raise awareness of the benefits of the vaccine in an effort to decrease incidence and mortality rates associated with HPV cancers.

The National Academies of Sciences, Engineering, and Medicine recently released its latest report on the consequences of smoking, specifically related to electronic cigarettes. The report discusses the new effects of e-cigarettes as a public health hazard. According to the report, the effects of long-term e-cigarette use are still unknown, especially related to morbidity and mortality.

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.”

Many women face a lack of information and understanding after their breast cancer diagnoses. Currently, women have more treatment options than ever before, and patients have the ability to review the latest findings to identify the option that fits best for their lives.

Since its initial announcement, the National Cancer Moonshot Initiative—dubbed the Biden Cancer Initiative—has captivated the scientific, patient advocacy, and provider communities with possibilities for advancements in cancer treatments and cures. The cancer moonshot continues to maintain bipartisan support, as all involved are committed to making a decade’s worth of progress in just half the time.

Former U.S. Senator Arlen Specter (R-PA) put partisanship aside to support federal funding for biomedical research. And, while battling cancer himself, he spoke about the National Institutes of Health (NIH) and its crucial role in finding treatments and cures. “Health is our nation’s number one asset. Without your health, you can’t do anything. I believe medical research should be pursued with all possible haste to cure the diseases and maladies affecting Americans. I have said many times that the NIH is the crown jewel of the federal government—perhaps the only jewel of the federal government.”

For the past two years, an acting director has served at the head of the National Cancer Institute (NCI). However, President Trump recently selected Norman E. Sharpless, MD, as the 15th director of the NCI. Sharpless, an oncologist with research and clinical experience, said he was humbled by the selection and is looking forward to carrying on NCI’s great mission.

The future of oncology care hinges on the implementation of new sciences, the collaboration of researchers, and timeliness with which healthcare professionals can integrate change into practice, according to a new report released by Lancet Oncology.

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.

In one bold declaration during his final State of the Union Address in 2016, President Barack Obama raised our hopes to a singular goal—ending cancer as we know it—as he announced the National Cancer Moonshot Initiative, now called the Biden Cancer Initiative. Grounded in real research with tangible results, the intent was not even that daring: it was more realistic. Eradicating cancer, now understood to be many different aspects of the same disease, in five years was unlikely, but rather the goal was to achieve in five years what previously would take a decade.

Senator Bernie Sanders (I-VT) recently gave an interview for The Nation to discuss his announcement and subsequent push for a single-payer healthcare system in the United States. During his 2016 presidential bid, Sanders campaigned for universal health care and gained significant support from the public. However, many on Capitol Hill were still unsure of a “Medicare-for-all” plan. Despite the initially tepid response, Sanders recently outlined a new single-payer healthcare bill he plans to introduce, and he’s gaining surprising support from several senators in Washington, DC.

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.

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.

On August 25, 2017, ONS submitted comments to the House Ways and Means Health Subcommittee in response to its Medicare Red Tape Relief Project. The initiative, sponsored by subcommittee chairman Pat Tiberi (R-OH), asked providers for input on ways to improve health care for seniors and reduce Medicare regulations and mandates.

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.

The Affordable Care Act (ACA), better known as Obamacare, is likely here to stay. After previous attempts to repeal and replace the nation’s healthcare legislation, the Senate has finally moved on to other issues. However, this hasn’t stopped President Trump from attempting to undercut some of the financial components of the ACA. Recently, former Health and Human Services (HHS) secretaries from both the Democrats and Republicans urged Trump to support ACA subsidies that could affect the cost of more than 10 million American’s healthcare plans.

High-ventilation (light) cigarettes have no health benefits to smokers and have likely contributed to increased incidence of adenocarcinoma deep in the lungs, according to the results of a new study published in the Journal of the National Cancer Institute.

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.

“Congress is working together on a nonpartisan issue that will have a profound effect on the lives of all Americans. H.R. 6, the 21st Century Cures Act, will bring our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments,” Chairman Fred Upton (R-MI) and Representative Diana DeGette (D-CO) discussed their vision for the 21st Century Cures initiative in April 2014.

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.