A Trio of HIV Specialists Offer Their Take on HIV -- Then, Now and in the Future
HIV doesn't discriminate geographically any more than it does any other way, but the experiences of physicians who treat it can differ significantly depending on where their clinics are. To get some sense of the differences, as well as the commonalities, PA asked three doctors to share their thoughts and experiences, especially when it comes to stigma, fear, and denial.
Dr. Betsy Brown has specialized in HIV since 1996 and practices in Santa Fe, New Mexico at the Southwest CARE Center.
Dr. Keith Henry leads the HIV Program at the Hennepin County Medical Center in Minneapolis, where he started the first AIDS clinic in Minnesota in 1986.
Dr. Paul Volberding founded the nation's first HIV program in San Francisco in 1981, and now practices at the VA and University of California, San Francisco.
How would you describe your patient population?
Brown: We have many Hispanics and whites and a significant number of Native Americans, but only a smattering of African Americans. We are also seeing more Central American immigrants. Most of our patients are gay men, although we do have a number with IV drug use as their HIV risk factor. We do not see many women, but it feels as if that is increasing. Our clinic is funded by Ryan White and we have many patients who would not have insurance if not for their diagnosis. We also have patients who have jobs and good income.
Henry: Initially, most of our patients were gay white men. Over the last three decades, I have seen a large shift toward more women (almost 30% of our population), more minorities (whites are less than 50%) and foreign-born people. We actively follow a large number of people (more than 350) from Africa.
Volberding: I see patients primarily at the VA, predominantly men; about 25% are people of color. They are great people. Most are very adherent, but many suffer from the same set of challenges in any HIV clinic -- smoking, alcohol, poverty. I also see a small number of patients at UCSF.
Compared to when you started in HIV medicine, what is your sense of HIV/AIDS stigma now?
Brown: I have been working in HIV medicine since 1996. Stigma is still strong here, especially in the more rural areas. The fear of being seen at our clinic is often palpable. We still have patients coming to the clinic who have a tough time disclosing their status and we still answer questions regarding fear families have of someone with HIV living in their household. This includes white, educated families as well as poorer, ethnically diverse ones. People also blame the person who is infected, believing it was being gay or their behavior that caused it -- using IV drugs, having multiple sex partners, etc.
Henry: When I started the first AIDS clinic in Minnesota in 1986, the stigma was staggering. The key driving factors then were links with homosexuality and fear of AIDS. For the openly gay community in the Twin Cities, acceptance regarding HIV and homosexuality has generally improved markedly. For closeted gay or bisexual men, rural residents, many women, minority groups (such as African Americans and Latinos), and foreign-born people (particularly those born in Africa), the experience of stigma remains severe.
Volberding: I saw my first AIDS patient at San Francisco General Hospital on July 1, 1981. The very earliest patients had little support, but the gay community quickly mobilized, providing services that replaced the absence of "normal" families. There never was any real panic in San Francisco despite the explosion of cases and our deep ignorance of the cause. Our early epidemic was almost exclusively in young gay men and the political and social climate was very accepting of that large community. I did have patients, especially with extensive facial KS, say they felt ostracized even within the gay community -- one said his only social life was movies at night so people wouldn't notice him. I felt some stigma directed at me, such as in "jokes" about shaking my hand, and it often felt as though devoting my career to AIDS was a bit "dissed" in the academic community. As the epidemic has matured and settled into a chronic disease affecting a largely impoverished population, often with underlying mental health and substance use issues, much of that early positive energy has waned.
Can you talk about what you are seeing from people who test positive for HIV -- their health status, their reactions, how they cope, their knowledge about HIV/AIDS?
Brown: The diagnosis is always difficult for people. I have seen people do okay until it's time to start meds; then reality sets in. Many people are diagnosed through our Es Mejor Saber ("It's Better to Know") testing program, but we have had several people not diagnosed until they were really ill because no one thought to do an HIV test. Many of my patients really thought they were low-risk and were shocked to find out they were infected. Their level of knowledge about transmission is really low. But it is not just the patients who aren't getting tested. The doctors don't think of it. I think that's the biggest change -- to many people it has become an invisible disease.
Henry: There is a very wide range of knowledge and experiences for newly diagnosed patients. Routine testing in pregnancy often identifies women with high CD4 counts, while sick inpatients often have a low CD4 count and a life-threatening AIDS-related illness. The local public health/sexually transmitted infections clinics test for HIV routinely and have been more often identifying patients recently infected. The average CD4 count for new patients seen at our public hospital has been in the 300s.
Volberding: AIDS was truly a death sentence in the early days and a diagnosis triggered deep panic. People coped with it and fought valiantly but then died. Now, HIV is still dreaded but definitely seen as a manageable challenge, a chronic disease.
Does it seem to you that Americans have made slow progress with respect to tolerance and acceptance when it comes to attitudes about people with HIV/AIDS?
Brown: I think the biggest issue right now is that HIV/AIDS has become an invisible disease. People aren't hearing about people dying from AIDS, so they think the problem is gone.
Henry: I think that as long as people get much of their information from popular sources such as People magazine, FOX News, and celebrity tweets, ignorance about important health matters will remain widespread. Despite widespread availability of the Internet with good sources of medical information, use of credible sources and learning how to filter out poor sources seem to be trending in the wrong direction.
Volberding: I think this also goes with more acceptance of homosexuality, in general. Certain states excepted, many have learned more tolerance, which I think extends to more comfort about HIV.
Brown: Also, younger people did not live during the height of the AIDS epidemic, so they don't remember the deaths from it. They also aren't learning about sex in a meaningful way, since sex education is really more about abstinence now.
Do you see much stigma within the health care setting, including among medical providers?
Brown: Yes! A young female patient of mine was hospitalized with brain lesions appearing like toxoplasmosis on imaging studies. She had two brain biopsies that showed toxoplasmosis before they actually ran an HIV test! Another example is a gay male who had KS lesions biopsied and diagnosed before an HIV test was offered. Last week a nurse in a nursing home said he was worried about sores on an HIV-positive patient infecting someone else, even if they were scabbed over (no blood) and his viral load was undetectable.
Volberding: I don't think there's really much [stigma] these days. We had some examples early in the epidemic -- patients being "dumped" on San Francisco General Hospital, or nurses not changing wet sheets, but not anymore. I've been rather impressed that sexual histories are routine these days in house staff presentations.
Henry: Ignorance and avoidance are still a problem, like not routinely testing for HIV or connecting clinical situations (for example, shingles, thrush, or very low lymphocyte counts) to it. There is also a growing stigma against immigrants, including HIV-positive immigrants, regarding access to the health care system. Immigrants are having more problems with immigration status, so they're afraid to use health care even when needed.
This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.
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