HIV infection and lung cancer have little in common from a disease perspective, but the stigma that surrounds both can negatively impact patients and their treatment. Now lessons learned from the HIV epidemic are helping people living with lung cancer and their loved ones.

During the first years of the HIV epidemic, some of the initial stigmatizing beliefs were that the virus only impacted men who have sex with men and that it was possible to contract it by sharing utensils or being in close confines with a person living with HIV. This helped contribute to acts of discrimination and an atmosphere of blame, and in some cases prevented people from getting diagnosed or seeking care.

People diagnosed with lung cancer face similar stigma challenges because of the known link to tobacco use – despite the National Cancer Institute’s estimate that 10-20% of people with lung cancer in the United States are non-smokers. As with HIV, the blame and stigma surrounding this disease can decrease the likelihood that someone experiencing symptoms will seek care.

“Stigma isn’t just a social issue; it’s a public health crisis.” says Marcus Wilson, Gilead Senior Director, U.S. Public Affairs, HIV Advocacy. “It determines the quality of care that people receive; whether they feel safe seeking care and, ultimately, their health outcomes.”

Gilead recently partnered with GRYT Health to host a New Lens on Lung Cancer workshop where people living with lung cancer and their loved ones shared their experience with stigma.

Rhonda Meckstroth’s husband, Jeff, who had no history of tobacco use, was diagnosed with lung cancer in 2015. “The first question was always, ‘Is he a smoker?’” she says. “We innately felt shame and guilt and would tell people he had been diagnosed with cancer, but we didn’t want to say lung cancer.”

“People project their ideas of why you have lung cancer,” says Aurora Lucas, who was diagnosed at 28 years old. “Within seconds they come up with absurd ideas.” She notes that some people speculated that it could be because she worked in a nail salon. Others incorrectly assumed it might be due to the building materials used in her childhood home in the Philippines.

As in the early days of the HIV epidemic, the lung cancer community quickly realized how important it is to advocate for themselves, both in and out of the clinic.

In Jeff’s case, his care was in a rural health care system where doctors weren’t always familiar with the latest research or the clinical trials available for lung cancer — or the fact that there are other risk factors besides tobacco use.

“Because Jeff didn’t fit the criteria for lung cancer, his diagnosis was delayed for about six months,” says Rhonda. “I quickly learned that instead of being angry when people asked me if Jeff had a history of tobacco use, I use it as a platform for education, and to put blame where it needs to be, which is on the tobacco industry.”

“We have so much to learn from the HIV community,” says Jeff Stibelman, who was diagnosed with lung cancer in 2021 after doctors also initially overlooked it on a scan he had done previously in 2017. “I remember a billboard, it was of all people: old, young, black, white, Hispanic, Asian. All it said was: ‘This is What HIV looks like.’ That’s what I want for our community.”

“Anyone with lungs can have lung cancer,” concludes Aurora. “It’s time to remove the blame.”