Robin Evans-Agnew and Jay Clay: Health care nonprofits have vital role to play

Americans deserve a better health care system in which science drives the decisions we make, we prevent the chronic diseases that put people in harm’s way, and we have the workforce prepared and equipped to prevent diseases like COVID-19 before they are even a threat. It is really as simple as that, but we cannot wait for government to shake things up. The vital third leg to the healthcare system stool is the health advocacy organizations that ensure the public and patients have a voice in advancing science and changing policy for such a system.

Jay and I decided to write this column because our health system is in need of a shake to its roots. Jay lost his wife to lung cancer, and I lead an association of pulmonologists, nurses and respiratory therapists now working inside critical care units and in the community to rescue everyone from threats to lung health, including COVID-19.

It was an advocacy organization that in 1913 made Spokane the home to the first public health nursing school in Washington state. The physician-led Washington Tuberculosis Association, coordinated by an inspirational secretary named Bethesda Beals Buchanan, successfully convinced our state government to empower the counties to build TB hospitals across the state, including Edgewood in Spokane. She partnered with physicians to launch a three-part campaign: educate the public, engage in research and advocate for the institutionalization of a public health nursing workforce. And it worked. That revolutionary health care system vanquished tuberculosis 20 years before a cure was discovered.

Patients and families impacted by disease become the strongest advocates for health care system change. For Jay, his wife had known there was something wrong for quite some time: It had started with a cough, followed by shortness of breath, that progressed to being winded walking their son to the bus stop. But it took him some concentrated effort to find a doctor in the system that would ultimately diagnose her with Stage 4 lung cancer. The disease was frighteningly swift; after three months of chemotherapy and radiation she ended up losing her battle. Left behind were Jay, their son, and hundreds of supportive friends and family. This disease didn’t just impact her alone; it impacted everyone her life had touched.

COVID-19 is the newest threat for those of us who fight against breathlessness, and we are learning that now, more than ever, we need the combined support of clinicians, government, and community organizations to survive. Legions of Americans remain critically vulnerable to this new infection, especially those from marginalized groups. Advocacy organizations that fight for patients with these chronic and acute diseases must have a leading voice in shaping the campaign for health system reform: Women with lung cancer; Black, Brown and LGBTQ people with heart disease, asthma and diabetes; and environmental justice communities that have been poisoned by pollution in the air and water. Communities more burdened by air pollution may be more at risk for mortality from COVID-19. But health advocacy organizations are especially at risk in this uncertain economy when our attention is focused (rightly) on first responders, those who cannot pay rent or find work, and now the tragedy of systemic racism.

The governor and the Secretary of Health say they are committed to addressing the racial health inequities exposed by COVID-19, but who is there to hold them accountable? Science-based advocacy organizations are essential in holding the government to making decisions based on evidence, not partisanship. On behalf of the clinicians we work with in lung health, the staged relaxation of the stay-home order in Spokane must be guided by public health science. But politicians are politicians, and we watch with alarm the disorganized rollback occurring across other parts of the country. Disorganization breeds bad data and further exacerbates inequities. Communities will depend on the guidance, support and advocacy of clinicians, public health and community organizations to navigate the days ahead.

At this postshock moment when we are considering what next must be done, we should remind ourselves that nonprofit organizations concerned with our health have a vital role to play in our recovery. Because it is through partnering with clinicians on the front lines, advancing science-based education and advocacy for governmental reform that the lungs, hearts and lives of those most at risk will be protected.

Robin Evans-Agnew is president of the Washington Thoracic Society and an associate professor of nursing at the University of Washington Tacoma School of Nursing and Healthcare Leadership

Jay Clay is a director at Expeditors and serves as the local leadership board chair for the American Lung Association.