Chaos syndrome is a chronic decline in the political system’s capacity for self-organization. It begins with the weakening of the institutions and brokers—political parties, career politicians, and congressional leaders and committees—that have historically held politicians accountable to one another and prevented everyone in the system from pursuing naked self-interest all the time. As these intermediaries’ influence fades, politicians, activists, and voters all become more individualistic and unaccountable. The system atomizes. Chaos becomes the new normal—both in campaigns and in the government itself.

Jonathan Rouch, The Atlantic
alec stone
Alec Stone MA, MPA, ONS Public Affairs Director

By all accounts, the 2020 political environment is one of the most contentious in American history. The two parties that dominate the political system, liberal and conservative, are even more entrenched in their separate ideals and doubling down during the presidential election cycle. The federal budget, immigration, and health care are the top issues discussed around the watercooler, kitchen table, and coffee shops—and of course the president’s impeachment is looming large.

Yet, it’s a ripe opportunity to be a harbinger for education. ONS advocates are actively engaged in the policy arena, sharing their stories and informing their representatives about the need for improved access and affordability, quality care, and workforce safety. Now, more than ever, oncology nurses need to raise their voices and advocate for policies and legislation to improve cancer prevention and care, patient experiences, and the nursing workforce.

Advocacy Achieves Results

When it comes to cancer-related legislation, policymakers seek to find common ground, working together for all Americans. ONS supported the Breast Cancer Education and Awareness Requires Learning Young Act, or the EARLY Act, which became law along with the Affordable Care Act in 2010. The bill came from U.S. Representative Debbie Wasserman Schultz (D-FL), a vocal cancer survivor herself.

“The EARLY Act focuses on a central tenet: that we must empower young women to understand their bodies and speak up for their health. It creates an education and outreach campaign that highlights the breast cancer risks facing young women 45 and under, and it empowers them with the tools they need to fight this deadly disease,” Wasserman Schultz said.

“We can never say it enough: every woman—especially every young woman—must take charge of her health and do what’s right for her. And if we say it loud enough and often enough, there’s no telling how many women we’ll help,” she added.

Washington Recognizes Nurses

ONS and its oncology nurse advocates are championing their causes just as loud and often, and congressional representatives want to hear from nurses. In early 2019, the Congressional Nursing Caucus, a bipartisan working group dedicated to the role of the nurse, shared these words in an internal House letter from U.S. Representatives Dave Joyce (R-OH) and Tulsi Gabbard (D-HI): “Nurses are the backbone of our healthcare system. As the largest healthcare workforce in the United States, with four million RNs nationwide, nurses provide care and comfort to patients in the most trying circumstances. The bottom line is that any challenge facing our nurses hurts the health and well-being of the American people.”

Nurses’ stories are different than what policymakers typically hear. They understand the patient experience like no other and can tell it in a way that produces action and results on Capitol Hill. Sometimes a jolt to the system is the most effective approach.

New Legislation Opportunities

In 2019, U.S. Senator Lamar Alexander (R-TN), chair of the Health, Education, Labor, and Pension (HELP) Committee, introduced a bill to improve healthcare access and affordability for patients.

“The Lower Health Care Costs Act will reduce what Americans pay out of their pockets for health care in three major ways,” Alexander said. “First, it ends surprise billing. Second, it creates more transparency—there are 12 bipartisan provisions that will eliminate gag clauses and anticompetitive terms in insurance contracts, designate a nonprofit entity to unlock insurance claims for employers, ban pharmacy benefit managers (PBMs) from charging more for a drug than the PBM paid for the drug, and require that patients receive more information on the cost and quality of their health care. You can’t lower your healthcare costs until you know what your health care actually costs. And third, it increases prescription drug competition—there are 14 bipartisan provisions to help more low-cost generic and biosimilar drugs reach patients.”

ONS and its advocates have many opportunities to support bills like this one, and others that will come up in 2020, that have a direct effect on patients with cancer.

How ONS Advocates Make a Difference

With congressional briefings on survivorship and tobacco cessation, ONS and its member advocates are a leading voice on Capitol Hill with elected officials and staff. And ONS efforts are producing results. Recent successes include the U.S. House’s passage of the Palliative Care and Hospice Education and Training Act and the Title VIII Nursing Workforce Reauthorization Act, both in October 2019 thanks to ONS’s advocacy efforts during the Fourth Annual Hill Days the month prior.

And that follows a long history of success. Helping to enact the 21st Century Cures Act in 2015, ONS was quoted on the U.S. House Energy and Commerce Committee’s blog as saying: “Thank you again for the inclusion of Sections 2082 and 2083 in the 21st Century Cures Act. We stand ready to work with you and your staff to reduce and prevent suffering from cancer, and are committed to maximizing the potential that nurses, the largest group of healthcare professionals, have in reducing the incidence of cancer.”

In today’s politically challenging arena, finding new ways to get the message to the right people is crucial. Decision makers rely on experts—like oncology nurses—to be their resources. ONS and its members are leaders in palliative care, symptom management education, coordinated care, smoking and vaping cessation, investment in cancer research and access to clinical trials, and specific diseases and their societal impact.

The times may change, but the need for advocacy does not. If you feel led to make a difference, learn more about how you can join with thousands of other oncology nurses to have your voice heard with ONS.