Like all great adventures, it began as an idea. What if the United States could make huge advancements in the fight against cancer in a short amount of time? How could that be accomplished? What are the metrics? How much would it cost? Who could direct such an effort? 

Millions of Americans depend on the Affordable Care Act (ACA) marketplace for their health insurance. In the past, costs have been unstable, seeing insurance premiums rise and competition flee. However, new reports estimate that Americans who receive health coverage from ACA will only see moderate increases to their premiums for 2019. During earlier repeal and replace efforts of Obamacare—otherwise known as ACA—the healthcare marketplace was volatile for consumers. Some insurers pulled out of the marketplace, leaving those that remained able to sharply increase premiums.

One of the biggest challenges in medical practice is finding a way to spend enough time with each patient amid all the regulatory paperwork. To streamline workflows and encourage better provider-patient relationships, the Centers for Medicare and Medicaid Services (CMS) proposed new reforms to roll back certain regulatory efforts that were saddling clinicians with cumbersome paperwork. As part of those efforts, CMS reevaluated some of its reimbursement methods to improve efficiency with its required paperwork.

As a hematology and oncology nurse, I’ve seen countless patients in treatment and recovery, and I’ve seen some lose their fight against cancer. In June 2018, I had the privilege to represent ONS as the sole nurse selected to advocate for palliative care with one of ONS’s coalition partners, the Patient Quality of Life Coalition (PQLC), where I was able to share my perspective and the many aspects of my role as a nurse with congressional staff. As the sole practitioner in the five congressional meetings, I provided insight about how nurses interact with patients, particularly during cancer treatment.

As the opioid epidemic ravages American lives, every federal agency with an opportunity to review access is stepping up efforts to find appropriate lines between offering proper care and potentially enabling abuse. In a recent statement, U.S. Food and Drug Administration (FDA) Commissioner Scott Gottlieb, MD, acknowledged the challenge of balancing quality care efforts with overprescribing medications and the potential ease of access to opioids.

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.

Under the Affordable Care Act (ACA), each state has the right to create its own basic healthcare system within its own jurisdictions. Currently, only New York and Minnesota have made such systems available to residents who are just over the limit to qualify for Medicaid. Those individuals receive their health care from the state—until the Trump administration eliminated certain aspects of ACA that provided federal funding for these programs. After suing to overturn the administration’s ruling, the Department of Health and Human Services announced a settlement that would pay close to half a billion dollars to New York and Minnesota to support the affected plans.

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.

The rising price of prescription drugs is an ongoing priority for the Trump administration. As part of the president’s blueprint to lower drug costs, the Department of Health and Human Services (HHS) secretary, Alex Azar, elevated the prescription cost issue throughout many federal agencies to help determine a new course of action.

A cancer diagnosis at a young age can lead to serious hardship after completing treatments and moving into survivorship. Such was the case for Matthew Zachary after his cancer diagnosis at age 21. An interesting component to Zachary’s story—and that of many others like him—is that despite the higher number of insured Americans after the Affordable Care Act, costs and complications still plague patients. Access to health care can be a double-edge sword. It means more people are seeing providers, but it doesn't mean that people can afford those treatments.

Senator John McCain’s (R-AZ) family announced on August 24, 2018, that McCain has elected to stop treatment for his glioblastoma, a rare and aggressive form of brain cancer. Although his health had surpassed his original prognosis for many months, “the progress of disease and the inexorable advance of age render their verdict. With his usual strength of will, he has now chosen to discontinue medical treatment,” his family explained.

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.

With more states legalizing medical aid in dying options for patients, the process is often vague and misunderstood. One patient, Aaron McQ, shared his story as he prepared to self-administer his life-ending medication. His story explains the nurse's key role in education and shared decision making to address the concerns of the patient.

Healthcare reform has been a hot political topic since before the introduction of the Affordable Care Act. Potential changes in the American healthcare system will be at the hands of which party controls the House of Representatives and the Senate. The upcoming midterm elections in November 2018 could determine a shift in power and potentially add further Medicaid expansion to the list of incoming health care changes.

’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.

The Kaiser Family Foundation released a report stating that coverage for pre-existing conditions ranks highest among healthcare campaign issues for American voters. According to the report, the issue cuts across all parties, including Democrats, Republicans, and voters living in battleground states. Since attempting to repeal and replace the Affordable Care Act, 58% of those polled say that President Trump’s administration and the Republicans in Congress are responsible for problems with the healthcare law moving forward.

As of July 16, 2018, the Agency for Healthcare Research and Quality (AHRQ) through the U.S. Department of Health and Human Services ceased maintenance on guideline.gov, the website that housed the National Guideline Clearinghouse. The website had been a resource for healthcare providers for more than 20 years.

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.

On July 16, 2018, Kevin Brady (R-TX), House Ways and Means Committee chair, announced that he’s working with the Trump administration to restore funding to key Affordable Care Act (ACA) payments. Previously, the White House suspended more than $10.4 billion in payments to insurers, which brought criticism from Democrats and stern warnings of rising healthcare premiums.

In response to the U.S. Food and Drug Administration’s (FDA’s) Advanced Notice of Proposed Rulemaking (ANPRM) on setting a tobacco standard for nicotine levels in combusted cigarettes, ONS submitted comments urging the agency to lower nicotine levels in combusted cigarettes and all tobacco products. Specifically, ONS recommended lowering the level of nicotine to a maximum of 0.4 mg or lower and that the ratio of tar to nicotine stay around 1 to reduce addiction. ONS pointed out that even lower levels of nicotine are harmful to health. ONS also cautioned the agency about the harm of additives in tobacco, including sugar, that counteract reduced nicotine levels.

ONS shared the perspective of nurses caring for patients who may struggle to afford cancer drugs in comments submitted to the Department of Health and Human Services (HHS) on its Prescription Drug Reform Request for Information.

Health care is arguably the top domestic policy issue and of major concern to most Americans. Coverage, access, and, most importantly, affordability are not abstract political concepts discussed in elite coffeehouse circles but rather are real-world problems that people struggle with daily. Do I need to see a physician for this problem? What impact will a diagnosis have on my life? Can I afford the medication?

Previously, reports had emerged that the Trump administration was considering cuts to funding for Affordable Care Act (ACA) outreach groups whose aim has been to educate and assist Americans interested in enrolling in the healthcare program. On July 10, 2018, the administration officially announced funding cuts to the outreach programs, reducing their funding from $36 million to $10 million for 2019.

An initial proposal from the Trump administration might cut funds for outreach related to the Affordable Care Act (ACA). As of yet no decisions are finalized and funding may still remain consistent, but limiting funding for outreach of the ACA, known to most as Obamacare, isn't a new move for the current administration. In 2017, it cut funding for navigators who educated and enrolled Americans in the ACA marketplace, leading to confusion among potential applicants and lower enrollment numbers. If funding is cut again this year, new or returning enrollees are unlikely to find success when looking for coverage.

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.

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.

The Department of Health and Human Services (HHS) Pain Management Best Practices Inter-Agency Task Force held its first public meeting from May 30–31, 2018, in Washington, DC. Convened as part of 2016’s Comprehensive Addiction and Recovery Act, the task force has been charged to address the nation’s continued opioid abuse crisis. During the two-day meeting, the 28-member task force deliberated on the goals of an upcoming study, set to be released July 2019, that aims to update best practices and clinical guidelines, while also addressing gaps and inconsistencies in chronic and acute pain management.

Options and cost are a double-edged sword as biomedical research marches forward and the list of approved drugs expands. More targeted drugs for specific diseases means that more patients have treatment plans that can directly fight their specific disease, possibly resulting in cures.

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.

On May 22, the U.S. House of Representatives passed S.B. 292, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act. The legislation will improve efforts to identify and track childhood cancer incidence, improve quality of life for childhood cancer survivors, ensure pediatric expertise at the National Institutes of Health by requiring the National Cancer Advisory Board to have at least one pediatric oncology expert on its board, and identify opportunities to increase childhood cancer research to better treat the 10,270 children diagnosed with cancer in the United States every year.   

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.

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.

With hopes for more than 1 million participants, the National Institutes of Health (NIH) has launched the All of Us initiative, a radical precision medicine campaign to amass a collective gene pool data repository. The NIH is aiming to shrink our differences and expand on the similarities found in our genetic data. For some, compiling genetic data of an entire country’s citizens may sound very reminiscent of Big Brother from the book 1984. But the amount of information that could be shared and learned from such a massive health database is remarkable.

Earlier in 2018, the Trump administration proposed a new rule that would permit Americans to buy short-term health insurance for up to 12 months, breaking from an Obama-era regulation that limited short-term health plans to a maximum of three months. To some, the proposed extension would potentially extend coverage to Americans interested in insuring themselves and their families. However, the America’s Health Insurance Plans group is on the other side of the argument, insisting that temporary plans—for any length of time—are no substitute to real coverage. Short-term plans are not covered by Affordable Care Act regulations, and it could lead to patients with pre-existing conditions being charged more for temporary insurance.

In coffee shops around the country, between clicking cups and grinding coffee beans, former second lady of the United States, Jill Biden, EdD, is quietly gathering small groups of oncology nurses, care coordinators, social workers, and family members who support patients with cancer to discuss the obstacles facing caregivers throughout the cancer journey. As part of the Biden Cancer Initiative’s (BCI’s) continued work to improve oncology care, this coterie of caregivers is heralding the trials and triumphs that come with addressing the physical, social, emotional, and spiritual needs of patients with cancer.

After a flurry of proposed legislation to repeal and replace Obamacare—the unofficial name for the Affordable Care Act (ACA)— the GOP has shifted its focus to other policy issues. In fact, many Republican senators and congressional representatives have removed any mention of the healthcare law from their websites. With the 2018 midterm elections approaching, GOP lawmakers are seemingly breaking with the Trump administration’s stance on the healthcare law, recognizing that their constituents may be in favor of the ACA’s many protections.  

Nurse practitioners (NPs) are key to improving the quality of care for their patients with cancer through advocacy—both in institutions across the country and in legislative offices on Capitol Hill. With the intent to remove barriers so NPs can help move the needle for healthcare policy, ONS’s Center for Advocacy and Health Policy held the summit, “Policy Barriers and Opportunities to NPs in Oncology,” on April 10, 2018, in Washington, DC.

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.

Researchers for the PanCancer Atlas, a genomic data set reference tool, recently completed an analysis of molecular and clinical information from more than 10,000 different tumors spanning more than 33 cancer types. The PanCancer Atlas is the result of nearly a decade’s worth of work associated with the Cancer Genome Atlas—a multi-institutional program driven by the National Human Genome Research Institute and the National Cancer Institute (NCI). The results of the analysis were published as a set of 27 papers.

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.

Although it’s one of the less visible commissions, the President’s Cancer Panel monitors the activities of the National Cancer Program and reports on the burden of cancer. The panel reviews a number of topics and keeps current with demographic information and the latest cancer incidence research. After reviewing and recommending based on existing data, the panel releases a formal report to the president. In its most recent report, the panel found serious issues with barriers to access for cancer survivors, and it addressed the costs of drugs and the value therein.

An estimated 14.4 million Medicare recipients were prescribed some form of opioid treatment in 2016, paid for by their Medicare benefits. In an attempt to help curb the national opioid epidemic, officials from the Center for Medicare and Medicaid Services (CMS) announced that Medicare would no longer pay for long-term, high-dose prescription pain medication. Unsurprisingly, the plan received flak from patient and provider advocacy groups alike. Opponents to the CMS announcement decried the efforts, citing barriers to crucial medications needed for patients in chronic or severe pain—including those with cancer.

In a new message, the National Institutes of Health’s National Institute on Aging (NIA) division introduced a public health campaign concentrating on smoking cessation for senior citizens. The program elaborates on a central theme that says, “No matter your age, quitting smoking improves your health.” The agency lists the benefits of cessation, including the critical health impact that diseases have on those who continue to use tobacco.

Racing against the clock to ensure the government stayed funded through September 2018, President Trump signed the Consolidation Appropriations Act, a $1.3 trillion spending bill that includes funding for a number of key nursing and public health initiatives. The bill, which had made its way through the House of Representatives and the Senate last week, also contains new clarifying language for the Dickey Amendment, ending a 22-year ban on government-funded gun violence research. ONS joined the Nursing Community Coalition—led in part by the efforts of the American Nurses Association—to support evidence-based inquiry into gun violence and its potential impacts on 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.