Navigating the Fringes of Health Care: the Role of Makeshift Medicine in the U.S.

We sat down with doctoral candidate Patrick Kelly to discuss the needs of marginalized Americans who seek care on the periphery of our formal health care system.

Despite spending more per capita on health care than any other country, possessing advanced medical technologies, and investing in health care reform through the Affordable Care Act, the United States still struggles with significant challenges of uninsurance and underinsurance. Consequently, a sizable portion of the population is unable to receive necessary medical care, leading them to the periphery of the formal health care system.

The term “makeshift medicine” describes health care practices that people use when they have difficulty accessing insurance, providers, and treatment. It was coined by Patrick Kelly, a doctoral student in behavioral and social health sciences, along with his advisors Katie Biello, vice chair of behavioral and social sciences, and Jaclyn Hughto, assistant professor of epidemiology and behavioral and social sciences at the Brown University School of Public Health.

In a recent article in Nature Human Behavior, “Makeshift medicine is a response to US health system failures,” Kelly, Biello and Hughto present three case studies of demographics on the medical fringe: transgender individuals seeking gender-affirming care, people who inject drugs and self-treat skin and soft tissue infections (SSTIs), and people who self-manage abortions.

“The makeshift medicine framework involves the actions that people take to meet their health care needs when they’re pushed outside of the formal health care system,” Kelly said. “They might share community resources, such as antibiotics or the knowledge that comes with managing the self-treatment process. But practicing makeshift medicine may not always address the health problem. It may also exacerbate it.”

We talked with Kelly to discuss the makeshift medicine framework, and how people are finding ways to bridge the health care gap.

What inspired you to write about makeshift medicine?

I grew up low-income and didn’t have health insurance for a period during my childhood. There was a time when I needed medication and we had to depend on these pharmaceutical packs that a physician was able to give us kind of on the down-low, because we couldn’t afford it otherwise.

During research experiences as an undergraduate and master’s student of public health, I was confronted with the reality that people were having to make really tough decisions about their health, and this made me think of my experience in adolescence.

When I applied for the Ph.D. program at Brown, I began focusing on what people do when they have a health problem, but have little access to care. What are the cognitive processes driving your medical decisions when you cannot access formalized health care, or when you choose not to because doing so exposes you to discrimination or stigma or suboptimal care? And today we’re seeing policy being used to legislate people out of the formal health care system, pushing them to the edges of medicine.

So we created the makeshift medicine framework, which is helpful in providing a common language that allows us to think about a multifaceted issue. It’s a framework that can be applied to different health topics. With dentistry, for instance, there are people who are practicing on their own mouths, pulling their own teeth if they can’t afford dental insurance or if the insurance they do have doesn’t cover needed care.

How does the idea of makeshift medicine build on existing research into “common care” and “formal-informal healthcare systems”?

In medicine, there’s the vertical transfer of knowledge from the provider to the patient. But we’ve written out this idea that our peers can be a source of medical care. Victor Montori’s “common care” speaks to the sharing of knowledge and practices between peers. You can see examples of this in families who practice home remedies that are passed down through generations.

Maybe we can rethink and start to realize that although it’s not a perfect solution, makeshift medicine practices can afford benefits when an individual has limited to no avenues to formally meet their health care needs.

Patrick Kelly

In her novel, Health Care Off the Books: Poverty, Illness, and Strategies for Survival in Urban America, Danielle Raudenbush describes the formal-informal exchange of resources where people share prescriptions and medical devices that they may get through their insurance. Those who have access share these resources with the members of their families and community who do not. Of course, a lot of these practices occur in a legal gray area, and so people also share knowledge on how to minimize the risk of prosecution.

With abortion care right now many people across the country have to go around the system while being mindful of the ever-changing laws around abortion services. In our article, the abortion case study points to a situation where legislatures quite literally remove protections for certain health care procedures and then move to criminalize those procedures, creating a gap filled by makeshift medicine practices.

How do access barriers disproportionately affect marginalized groups?

The more identities that one holds that are typically targeted by society — whether that be at a structural level through legislation or through interpersonal conveyed discrimination — they’re going to have a more difficult time meeting their health care needs in the formalized health care system. That’s when people try to address those needs on their own.

How can people balance the need for health care with the potential risks of informal health care practices?

We know that these self-treatment practices can be health harming and can have the unintended consequences of worsening a problem. But we want to be mindful that many people are ostracized from formal medicine. And so makeshift medicine becomes a rational choice.

When I think about these practices, I’m drawn to the principles of harm reduction, which say: ‘it’s not going to be perfect but maybe there’s one thing that can help this person in the midst of a health crisis.’ Maybe we can rethink and start to realize that although it’s not a perfect solution, makeshift medicine practices can afford benefits when an individual has limited to no avenues to formally meet their health care needs. 

What should policymakers know about vulnerable populations relying on themselves and each other for health care?

There’s this idea of ‘centering the margins’ that calls us to consider who might be within  the margins of a piece of legislation. You think about who’s going to be negatively impacted by a policy: ‘Why is this happening? Is this a decision that we’re willing to make?’ 

We need to return to policy that is rooted in evidence instead of fear. Because right now, I think specifically with access to gender-affirming care and gender-affirming care for youth — we’ve just lost sight of that entirely.

For more on makeshift medicine, read commentary from Kelly, Biello, and Hughto in Nature Human Behavior: “Makeshift medicine is a response to US health system failures”