How Many Institutions and Actors Does it Take to Create Exercise Options in the West Valley?

My blog topic is understanding the local landscape to remove barriers and create incentives for community-based exercise for cancer survivors.

The implementation level of my topic is the local municipalities and regional governmental bodies in Phoenix’s West Valley, but it is also true, as Longest describes, that support for local exercise opportunities is linked to implementation policies developed and adjusted at every level of law-making and implementation (Longest, 82, 84). From the perspective of localities in the West Valley, support for physical activity is a very slow slog from policy formation through policy modification, especially because most local policy-implementation bodies— the ones responsible for creating local exercise programs —  aren’t directly involved until after there is funding and political will to move forward.

Phoenix’s West Valley is an exception to this trend, which is why I am participating in this effort. Even so, there is still a lot of slogging to be done through seven different levels of involvement. This blog starts with the federal level, and steps down through each level to provide a sense of how many institutions and actors must work in coordination to create an accessible exercise program for cancer survivors.

The good news is that coordination is happening in Phoenix’s West Valley, which I will describe in my next blog. For now, it is important to put our progress in context so you know just how exciting it is to see exercise become a local community priority.

FEDERAL GOVERNMENT

At the federal level is the Centers for Medicare & Medicaid Services (CMS). CMS does a good job of identifying and supporting local physical activity promotion programs like Silver Sneakers and some locally targeted interventions, such as hospital-based programs that specifically support people living with diabetes with physical activity education. Unfortunately, because of the need for cancer survivors to receive individualized exercise prescriptions that address their particular impairments associated with cancer treatment, it has proven difficult for survivors to take advantage of CMS support. Neither Medicare nor Medicaid provide financial support for cancer-related physical activity unless the survivor has debilitating injuries caused by treatment and for which an IDC-code of physical impairment has been assigned by oncology clinicians. But for those survivors who are not impaired enough to require physical therapy, reimbursement for cancer-specific exercise designed to lessen the impacts of neuropathy, lymphedema, and cancer-related fatigue is rarely available. Even participation at Silver Sneakers, which is free under Medicare, requires survivors to have the time, money, access, and self-motivation to attend.

 NATIONAL MEDICAL INTEREST GROUPS

Still at the national level, medical special interest groups have exerted a strong influence, but their effectiveness at creating exercise opportunities is minimal. For example, the American College of Surgeons (ACOS) Commission on Cancer (CoC) sent shock waves through the oncology-treatment-provider world in 2015 when it first required the implementation of survivorship care plans as part of its Cancer Program Standards for the accreditation of cancer programs. The CoC created a strong motivation for addressing physical activity that continues today as providers are held accountable, but the implementation strategy has been disappointing. Most survivorship care plans that are required for CoC certification are dozens of pages long, presented to the survivor up to one year past the end of acute treatment, and they frequently address physical activity with boilerplate paragraphs about the importance of becoming more physical activity. Although many had hoped that survivorship care plan preparation and delivery would involve a thorough review of patient needs and be delivered by a trained facilitator, most treatment facilities now rely on third-party software that pulls individual survivor data from electronic medical records, drops the information into generic plans, and are delivered electronically to discharged survivors. This is the case with Mayo Clinic Arizona for example.

 MULTI-STATE HEALTHCARE PROVIDERS

The third group of actors resides at the multi-state level: Insurance providers. As healthcare moves closer to a value-based payment system, insurance providers are seeing an erosion of their historic role in deciding who gets reimbursed for exercise and who doesn’t. The hope of researchers is that moving to a value-based payment system will unite private payers and groups of hospitals and physicians to voluntarily provide effective and safe exercise options across a spectrum of locations such as out-patient clinics, senior centers, exercise specialist training studios and community college fitness centers. As a government leader, the Department of Health and Human Safety set a goal of making 905 of all Medicare fee-for-service payments subject to value metrics by 2018. Clearly, this goal remains aspirational.

 ARIZONA GOVERNMENT AGENCIES

A fourth group are at the state-level: government agencies like the Arizona Department of Health Services and their internal Arizona Cancer Coalition (ACC), whose mission is to increase access to resources through the ACC Cancer Control Plan, which specifically focuses on delivery of survivorship care plans. https://www.azdhs.gov/prevention/tobacco-chronic-disease/cancer-prevention-control/az-cancer-coalition/index.php#cancer-control-plan-qol.  Unfortunately nothing in their mission or their currently stated objectives specifically includes exercise programming. Reliance on survivors’ survivorship care plans is a step in the right direction, but implementing exercise programs is still a stretch.

 NATIONAL NON-PROFIT ADVOCACY

Scattered across the landscape are patient advocacy non-profit groups. A perfect example of how these non-profits work, and don’t work, for the West Valley is the history of the YMCA in conjunction with the LIVESTRONG Foundation partnered in 2007 to create a program specifically for cancer survivors under the banner of LIVESTRONG at the Y. (https://www.livestrong.org/what-we-do/program/livestrong-at-the-ymca). The national program is a 12-week, twice weekly curriculum that introduces survivors to different forms of exercise delivered by instructors who attend a 16-hour training program to learn how to address cancer-specific limitations. The program is free for survivors; they do not have to be members at the YMCA where the program is delivered. The intent was for survivors to integrate exercise into their lives, and eventually join the YMCA where they received the program. The LIVESTRONG website claims more than 30,000 individuals in 400 cities nationally have participated.

Where and how to implement LIVESTRONG at the Y is decided by the governing board for each individual YMCA. As a partner in the program here in the Phoenix metropolitan area, I am familiar with the program’s history. Each YMCA that is governed by the Valley of the Sun board must underwrite the cost of the program, which is $500 per survivor. In 2015 and 2016, LIVESTRONG at the Y came to Arizona, greeted by the board with great enthusiasm. It was delivered at six locations throughout the Valley, including YMCAs in neighborhoods with lower economic profiles including Goodyear, downtown Phoenix, and Mesa. In all three of these communities, the program ended after one 12-week session because of the high cost and low attendance. Because the program is free, individual YMCAs tended to offer the program at their off-peak hours, during the day, when most survivors are back at work. Currently LIVESTRONG at the Y is only offered occasionally and only in Scottsdale.

The crucial point I’m making by providing this information in such detail, and by providing context, is that the failure of  LIVESTRONG at the Y in the West Valley has been used by some municipal actors and other non-profits to pass on involvement in West Valley community partnerships.

LOCAL NON-PROFIT ADVOCACY

Another non-profit that is locally based in Arizona is a particularly healthy, well-endowed activist group: the Vitalyst Health Foundation. Vitalyst self-defines its scope as state health policy and advocacy and describes itself as “engaging with municipalities, community development stakeholders, community-based organizations, residents, and national partners to ensure that community environments support health through public policies and practices.” According to its website, Vitalyst was established following the sale of the St. Luke’s Health System to a for-profit corporation in 1996. Before becoming Vitalyst, the foundation operated as St. Luke’s Charitable Health Trust (1996–1999) and St. Luke’s Health Initiatives (2000–2016). Again, from the website, Vitalyst reports it has invested nearly $125 million into Arizona acting as a thought leader, convener, framer, and catalyst of key health initiatives and coalitions. From the standpoint of creating exercise options, Vitalyst offers an example of how its guidance made a difference by documenting its involvement in a 2017 community-based development in South Phoenix: http://vitalysthealth.org/wp-content/uploads/VitalystSpark-PreCommunityEngagement.pdf

THE LOCAL NON-PROFIT ACTOR ACTUALLY MAKING PROGRESS: SUN HEALTH FOUNDATION

My next blog will describe the public sector institutions and actors that are coming together to create access to physical activity in Phoenix’s West Valley through the leadership of the Sun Health Foundation (SHF). SHF is an Arizona 501(c)(3) nonprofit organization and the philanthropic arm of Sun Health, which operates three hospitals in the West Valley and three residential communities for seniors, with a fourth under construction. SHF describes its mission as working in partnership with the community to champion superior health and wellbeing through philanthropy, inspired living, and wellness programs within the West Valley communities (www.SunHealth.org).

On February 13, 2020 SHF convened its second annual Sun Health Community Leaders Forum, which is part of SHF’s Generosity for Generations Campaign. The campaign goal is to raise a total of $48 million in 48 months to be completed in 2022. As part of its mission, SHF is seeking input across the spectrum of Arizona’s health community, including me.

Nancy Litterman Howe

Nancy Litterman Howe, M.S., C.E.S. is a cancer survivor and a 4th-year PhD student at Arizona State University, Edson College of Nursing and Health Innovation. As a 2020-2021 National Coalition of Cancer Survivorship (NCCS) Elevate Ambassador, Howe advocates for providing cancer rehabilitation services to people from the point of cancer diagnosis, through treatment, and for the balance of life. Howe lives in Phoenix, AZ. Email address: NancyLHowe@gmail.com

2 thoughts on “How Many Institutions and Actors Does it Take to Create Exercise Options in the West Valley?

  1. As cancer continues to rock so many lives, it is important to not give up on finding a way to strengthen the lives that have been affected by cancer. Just like any major health initiative, policy change is an ever evolving act that requires multiple levels of reform. As we have learned, the Social Security Act introduced during the Great Depression has evolved into what we know today as Medicare (Longest, 2016). It took years of institutions and actors to reform the initial bill and still is by no means perfected, but it is a result of many stakeholders, policy makers, and activist.

    Unfortunately LIVESTRONG by Y did not succeed as planned, but it is valuable to learn from the defeats and strategize to overcome moving forward. Although some may use the defeat as fuel to not put effort into such programs, there are several ways to overcome such barriers.

    Advocates, insurance companies, and policy makers are all important actors and institutions that need to come to the table. Recently I interviewed Dr. Shah (personal communication, February 14, 2020). He is part of the House of Representatives for Arizona and represents District 24. We had a great conversation about changing legislation, specifically on how to change coverage of insurance companies, including Medicare, Medicaid, and private insurance. In regards to mandating insurance companies to cover certain benefits he explained, “It’s the exception not the rule.” He added sometimes you can have advocates and community stakeholders approach insurances and explain the risks versus rewards. If it is beneficial to all parties, change can happen that way as well.

    I hope you continue to find ways to improve exercise opportunities for cancer survivors. It is near and dear to my heart. I deeply appreciate your efforts!

    Reference
    Longest, B. B. (2016). Health policymaking in the United States (6th ed.). Chicago, IL: Health Administration Press.

    1. Hi Briana,
      What a helpful response this is! I hadn’t thought of going to the AZ state legislature with this problem, but you are right — it seems that Dr. Shah (House of Representatives, District 24) gets it. It is encouraging too to discover that there is at least one physician in the legislature. Thanks so much for bringing his enthusiasm for change to my attention.

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