Policy and Advocacy Issues Affecting Patients in Need

Engaging in advocacy is one of the key responsibilities of patient and nurse navigators, according to Elizabeth Franklin, MSW, from the Cancer Support Community.

“I don’t think you’re fulfilling your professional role unless you engage in advocacy,” she said at the AONN+ 10th Annual Navigation & Survivorship Conference. “Our patients deserve as much as we have in our tool kit to put toward their health and well-being, and advocacy is one important tool in that.”

The First Amendment to the US Constitution states that “Congress shall make no law respecting an establishment of religion; or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.”

Ms Franklin said that in simpler terms, this means that if you’re upset about something, you have the right to petition to change it.

“We talk a lot about grassroots advocacy, and all that means is that people like you and me, people who are not lobbyists and do not live in Washington, DC, can engage in advocacy,” she said. “A lot happens on the federal level that really has an impact on patients, but also on the state and local levels, and I would even challenge you to think about policy decisions that are made in your hospital or clinic.”

Lobbying versus Advocacy

There’s a big difference between lobbying and advocacy. Lobbying is specific and is legally defined as the act of attempting to influence decisions made by elected officials. Advocacy, on the other hand, is about education, including education of elected officials and staff (ie, city council, state legislators, members of Congress, or hospital administrators). It’s defined as the act or process of supporting a cause or proposal, and it can be conducted by any individual or organization.

“We can all educate; we can all advocate,” she said. “We don’t have to be professional lobbyists to do that.”

She admits that Capitol Hill can be intimidating but encourages navigators to be empowered by the fact that they know more about patients with cancer than most people on Capitol Hill, and they should see this as an opportunity to advocate for those patients.

“Members of Congress, members of state legislature, members of city council and their staff need to hear from you,” she said. “That was the biggest lesson I learned when I moved to DC. I felt a little icky at first going up there and being a lobbyist, but I figured out very quickly that cancer patients depend on me to provide that information to members of Congress and their staff.”

Cancer is a bipartisan issue, and advocating for patients is more effective when it remains bipartisan. Most people, regardless of party lines, have at least something in common; the trick is in doing your research, identifying that common ground and building on that relationship, she said. But advocating for patients with cancer does have a slight advantage: by and large, most people care about patients with cancer, and most have been affected by it in some way personally, she added.

“All advocacy is—is relationship building—just like you build relationships with your patients on a daily basis,” she said.

A Beginner’s Guide to Advocacy

Advocating is certainly not confined to Capitol Hill, and can involve:

  • Writing a letter/e-mail/postcard, calling or meeting with your elected official
  • Attending a lobby day about a specific issue
  • Testifying in a committee hearing
  • Signing onto a coalition letter
  • Writing an op-ed piece or letter to the editor of your local paper
  • Volunteering on a campaign
  • Sharing patient stories
  • Tweeting at/tagging (on Facebook, Instagram, etc) your elected official
  • Voting and helping others register to vote.

And the list goes on...

Ms Franklin says that advocacy should start by identifying the issue and the players involved (is it a state/federal/hospital issue?). Identify the story you want to tell and practice telling it. Find data that support the issue, and identify the appropriate audience to target. Do your homework and identify the solution (don’t simply complain; offer solutions). Then, take action and advocate, and then advocate again…and again.

“It’s never ending,” she said. “There’s always something to advocate for, and it takes time.”

She reminded attendees that elected officials work for constituents. They are just people, and they are not experts on every issue. So, know where to focus your efforts (and don’t ignore district offices), be prepared with both personal stories and data, be brief and respectful, and thank your elected officials for their time, she advised.

Ms Franklin is a member of the AONN+ Policy and Advocacy Committee, whose members seek to utilize legislative, regulatory, and policy advocacy to protect and promote the practice of oncology patient navigation to best serve individuals and families impacted by cancer.

“We’re constantly thinking about the needs of patient and nurse navigators, as well as our patients and their loved ones,” she said.

The committee is currently recruiting for 2020, and she urges navigators to get involved.

Understanding Medicaid Expansion

According to Debra Kelly, RN, BSN, OCN, ONN-CG, a nurse navigator at Sarah Cannon Research Institute, all Americans pay the price when low-income Americans are in poor health.

“This is not a political issue, this is a people issue, and I just want to help my patients get cancer treatment,” she said.

The intent of the Patient Protection and Affordable Care Act (ACA) was to provide low-cost insurance to the uninsured and to poor, low-, and middle-income Americans through subsidy and Medicaid expansion. It also sought to offer protections for Americans with preexisting conditions, continued protections for young adults aged 18 to 26 years, and for people who may find themselves unemployed or sick.

“But Medicaid expansion is where everyone gets confused,” she said.

Medicaid expansion is a component of the ACA that was designed to provide early interventions for those with chronic illness, encourage prevention and nutrition, and provide care for the elderly, mentally ill, disabled, children, and the poor.

For every $1 a state invests in Medicaid expansion, an estimated $13.41 in federal funds will flow into the state. The impetus for the expansion is providing insurance for the unemployed, temporarily disabled, and low-wage earners who find themselves without insurance and do not earn enough to qualify for marketplace insurance.

The uninsured rate varies by state and can be as high as 25%. But despite the concern that Medicaid expansion is too expensive for some states to adopt, research done by the Kaiser Family Foundation revealed that Medicaid savings actually offset expenditures in the states that adopted it.

“So how can we save money when we’re spending more money?” she asked. “Because there’s a positive economic impact when you’re covering and treating people early on.”

Positive economic impacts and cost offsets included:

  • Interventions and earlier detection of cancers, diabetes, and coronary artery disease
  • Availability of mental health treatment
  • Treatment for opioid addiction and other substance abuse
  • Reduction in marketplace insurance premiums (because more sick people showing up to emergency departments were insured)
  • Reduction of medical debt and bankruptcies due to medical debt
  • Adults living with disabilities were more likely to be employed
  • Criminal justice system cost reductions (many uninsured, mentally ill individuals end up in jails).

“The cost of doing business is much higher in states that don’t participate in Medicaid expansion,” she said. “My favorite example is Ohio: they embraced Medicaid expansion, and bankruptcy due to medical debt was cut in half.”

Hospital closures are at an all-time high in the United States; they are 3 times more likely to occur in rural areas in states that did not implement Medicaid expansion due to the fact that the majority of uninsured individuals live in rural areas. Currently, 14 states have opted out, denying coverage for the most vulnerable and leaving many people uninsured, she said.

However, the poor, mentally ill, and low- to middle-income families continue to go to hospital emergency departments for care, driving up hospital costs and often closures. Now, because of these closures, Americans are facing the emergence of healthcare deserts. When faced with a medical emergency, some people have to drive more than 100 miles to seek care. By that time it is often too late, resulting in detrimental outcomes or deaths.

With little or no availability of nearby healthcare services, rural communities are becoming unattractive to young families and retirees, resulting in economic and population decline in these areas. As a result, she says, the economic stature and potential of the entire country is threatened.

“When Americans are in poor health, it costs us all,” she said. “If we cover every American with health insurance, we’re talking about saving $1.8 trillion in medical care, and I would no longer be from a state (Texas) with the highest number of amputations because we don’t take care of people with diabetes.”

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