In 1982, as his immune system waged a furious battle against a virus later called HIV/AIDS, and as people afflicted with the illness — many of them friends — started to die all around him, Steve Pieters faced the possibility of his own death.
Steve Pieters with his mother around the time of his diagnoses
“Point zero-zero-zero one percent,” was what Pieters, then 30 years old, initially thought were his chances of surviving. “AIDS killed everyone back then. It was a death sentence — period.”
Two years later, he was diagnosed with Kaposi sarcoma
and given between eight months and three years to live.
“I felt myself plunging into this abyss of fear and grief and loss and sadness and anger — all of it,” said Pieters of his reaction to the news. “I thought I had all the time in the world and suddenly I didn’t.”
Almost 35 years to the day since falling ill, Pieters, sitting in an overstuffed chair at his home in the Silver Lake neighborhood in Los Angeles, recalls how lonely it felt to suffer with a new, unknown and frightening disease.
How it felt to be in the hospital with doctors, nurses and other staff who refused to touch him. How they would don gowns and gloves for simple checks of his eyes and leave meals outside his room. He felt stigmatized, he says, for having what many regarded as a “gay disease.”
“I felt like an animal in a zoo,” he said. “I felt dirty. And I was so hungry for human touch.”
Pieters admits that society’s views of HIV/AIDS, and of gay men, have come a long way since the '80s. But for some members of LGBTQI (lesbian, gay, bisexual, transgender, queer and intersex) communities, the attitude of the health system still, in some ways, mirrors what he went through back then.
Pieters shortly after undergoing an experimental treatment that saved his life
“People may be accepting of the L-G-B part but the T-Q-I part is still a little hard,” said Pieters, also a minister and a retired clinical psychotherapist. “People who are gender-fluid or androgynous, intersex people, transgender people — they talk about the difficulty of finding good health care.”
Experts in the field say LGBTQI communities are some of the most underserved and understudied minority groups in U.S. health care — and that has serious implications for cancer care.
According to a report
in CA: A Cancer Journal for Clinicians
, having a gender identity or sexual orientation that is not mainstream is associated with an increased risk of cancer — and lower survival. The reasons behind this are complex, but two big factors are income and access: about one-third of LGBT people are low income and uninsured.
“We still see stereotypes on TV shows like ‘Will and Grace’ when it comes to perceptions of the gay community,” said David Rice, director of Professional Practice and Education and a member of “Pride in the City,” an LGBT diversity resource group
at City of Hope. “It’s of the affluent lawyer living in his Upper West Side condominium, wearing custom-made suits. That's not the reality.
“Many people think of gay people as affluent, but actually there is a disproportionate amount of poverty and underemployment and underinsurance in LGBT communities.”
In addition to poverty and lack of insurance, risky behaviors practiced among some in these communities — including high rates of smoking, drinking
and risky sexual behaviors — are associated with increased risk of cancer and poorer health outcomes.
But perhaps the most pronounced barrier to optimal care in LGBT communities is the least tangible: fear.
“It’s fear among many in these communities of not feeling welcomed in health care settings,” said Rice. “It’s fear of not being respected and fear of reprisal for who they are.”
Fear and reticence are, in many cases, founded, especially among groups (like transgender, queer and intersex communities) about whom societal fear and ignorance is still quite pronounced.
A healthy Pieters in 1987
National studies are scant, but a large-scale 2015 survey
conducted by the National Transgender Center for Equality, involving 27,715 transgender individuals, found 33 percent reported being harassed, disrespected or refused treatment because of their gender identity.
Approximately 33 percent of those surveyed did not get needed health care because they could not afford it — and 23 percent did not seek care because of fear of being mistreated.
Rice says lack of training and heterosexual bias among providers is still common. A study he cites during education sessions for providers and staff at City of Hope found the average time spent on LGBT health issues in medical school hovers around five hours.
“In medical education, there is a heterosexual norm in the approach to patient care and treatment,” said Rice. “Physician and midlevel providers note a discomfort in caring for LGBTQI patients."
Rice added that ongoing support and education is required to change the traditional medical paradigm: "We cannot deliver quality, safe, personalized, patient-centered care to LGBTQI patients and families until the current frame changes.”
The study Rice cites goes further: By not explicitly teaching about LGBT issues, physicians, medical students, nurses and other health professionals will reflect the same homophobia and heterosexism that exists in broader society.
“Ideally intersex, transgender, other communities should not have to educate providers,” said Pieters. “Back in the '80s, as gay men and lesbians, we shouldn’t have had to do the education — but we had to or nobody would.”
The onus of educating may still lie with marginalized groups, but Rice says a better solution would be more national studies and data collection focused on LGBTQI communities, improved education of the health care community about LGBTQI issues and an emphasis on creating more welcoming, inclusive environments for marginalized patients.
“Knowing your patients’ particular risks means you can screen appropriately, educate about behavior modification and counsel in areas you might not otherwise,” said Rice. “It’s about having information about what’s important to the patient and important to their care.”
Pieters says to those who feel unwelcome or unsafe in health care settings: "Just run"
Faced with a system that devalues health issues that are important to them, studies — and anecdotes from people like Pieters — suggest a tendency among LGBTQI communities for sharing information about “good” doctors (which can be few and far between) — or, worse, avoiding care altogether.
“What we’re looking for is people who understand the broad sense of us,” he said. “About what our issues are and what our experience is.”
It was a series of events, including losing his health insurance, that led Pieters to providers who had that understanding — and eventually City of Hope. After losing coverage, Pieters ended up at Los Angeles County+USC medical center, which offers care to the indigent. It was there that he first met Alexandra Levine, M.D., M.A.C.P.
, a world renowned hematologist-oncologist who ultimately saved his life.
When Levine later moved on to practice at City of Hope, Pieters followed. It was Levine, and later the greater clinical community at City of Hope, who he says created the conditions for his healing and survival.
“One of the things Dr. Levine taught me early on was that we are co-creators with our physicians of our health and healing,” said Pieters, now 65, and healthy. “So it’s really important that we have a trusting relationship because we’re partners in getting well.”
He offered advice to members of the LGBTQI communities who still feel misunderstood by the health care system. In situations when they feel less than safe or welcome with a provider: “Run,” he said. “Get another opinion, get another doctor.