When doctors stigmatize their HIV-positive patients, health care can become a pill too bitter to swallow.
When Sky, an HIV-positive woman from Queens, made an appointment with a podiatrist at her local infectious-disease clinic in 2001, she never imagined that stigma surrounding her HIV status would come between her and proper health care. But when a medical assistant reacted to her status after reading her chart—by leaving it wide open, pointing out Sky’s status to the doctor and refusing to treat her—the message that stigma exists even at the doc was made painfully clear.
“You pick up on these things, and you don’t want to be bothered with people acting like that,” Sky says. “You feel like you don’t belong in there, and people look down on you.” Sky immediately told the doctor how she felt about what had happened, and he shared her concern about his assistant’s reaction. But for Sky, the damage was done. Today she travels all the way to the Bronx to receive health care—avoiding the local clinic and the feelings of shame and degradation she experienced there.
Sky’s situation happened six years ago, but according to a new study conducted at the University of California, Los Angeles, doctors are still stigmatizing their HIV-positive patients. Hearing that HIV patients were perceiving stigma in health care settings—and that stigma was a possible deterrent to patients’ seeking proper care—Los Angeles HIV specialist William Cunningham, MD decided to research the dynamic between doctors who stigmatize HIV-positive patients and the patients who felt stigmatized.
“I’d heard from patients that they feel discouraged or blamed for their condition and sometimes treated poorly by various staff,” says Cunningham. “I became concerned that this may be a reason why they would delay seeking medical care and getting all the care that they needed.”
The UCLA study examined 223 HIV-positive people in Los Angeles county, each of whom was asked if a health care provider had ever been uncomfortable with their HIV diagnosis and if he or she had treated them in an inferior manner, preferred to avoid them or refused to treat them. Cunningham co-authored the study with doctors Janni J. Kinsler, Mitchell D. Wong, Jennifer N. Sayles and Cynthia Davis. The results of the two-year study were published in the August 2007 issue of AIDS Patient Care and STDs. The big news? One in four people living with HIV feel stigmatized by their health care provider.
Ten years ago, incidences like Sky’s were even more dramatic. For example, in Philadelphia, roughly a decade ago, Michael Palumbaro, 64 and positive since 1987, was shocked when a resident used Palumbaro’s T-shirt as a barrier when checking for cervical lymph nodes around his collarbone. Months later, according to Palumbaro, a different resident at the same clinic who knew that Palumbaro was HIV positive could barely look at him. The resident seemed to shield himself from Palumbaro by holding his chart in front of his face. Palumbaro insisted that his protease inhibitor was making him dehydrated, but the resident kept repeating that his numbers looked great and kept his distance, refusing to examine him.
“It made me feel that he not only didn’t want to touch me, but he also didn’t even want to see me,” says Palumbaro, who argued with the resident repeatedly to put down the chart and listen to him. When the resident left, a nurse practitioner examined him, drew some blood and determined that he was indeed dehydrated. She then put him on an IV drip to rehydrate him and balance his electrolytes, and the doctor switched his protease inhibitor.
Palumbaro concedes that the culture as a whole is more educated about HIV today, but makes no excuses for the ignorance he faced. “It’s not as bad now, but even 10 years ago doctors should have known better,” Palumbaro told POZ.
While sensitivity training around HIV is available to health care workers, there is currently no universal requirement for medical professionals to undergo such training. But the results of this new UCLA study on HIV stigma may change all that.
Though the UCLA study only measured perceived stigma and was based solely on patient interviews (as opposed to observed interactions in a health care setting and polls of doctors and health care workers), whether each participant actually experienced stigma is still in question. Future studies are needed to investigate whether stigmatization is truly taking place. However, the UCLA study is an important first step toward fortifying the doctor–patient relationship in HIV care.
“[People living with HIV] have a disease, and they need care. And as health care providers we should provide it without judgment,” says Cunningham. “But health care providers are human, and their own judgment or attitudes or beliefs [may influence] the way they behave toward patients. They may not even be aware of it. On the flip side, most providers have positive attitudes. It’s the minority that don’t.” That said, it is still important to ensure that patients feel comfortable when seeking treatment.
“Now that we know that [fear of being stigmatized by their doctor] is a barrier [for HIV- positive people seeking care], we are designing interventions to both educate health care providers and also to educate patients with HIV about how to better navigate the health care system,” says Cunningham. “The relationship between HIV-positive people and their health care providers is essential for maintaining their health.”
As for dealing with the minority of doctors who are stuck on stigma, Palumbaro has this advice for positive people: “Each time a doctor belittled me, I confronted them on the spot,” he says. If a doctor is treating you unprofessionally, he needs to know. If they’re never held accountable, they’ll just keep doing it.”
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comments 1 - 5 (of 5 total)
Joey, Long Beach,CA, 2007-09-25 13:25:12
Why do people tolerate this? Did these people learn nothing in med school? Complain to the higher ups at every level every time!
Dawn, Simi Valley,CA 93063, 2007-09-25 09:29:57
I just went to my dentist to have my teeth cleaned. This was my 4th visit and I had woman clean my teeth that I had not met before(but she has been with dentist a long time). I did disclose my HIV status right from the start and its in my chart. At the END of my last cleaning and up at the front deck with many staff and fell patents at or near counter the hygenist Said very loudly (Oh ar you HIV or AIDS?) I had & I was in shock!I did eductate her about privacy issues & the law. Shocked me
Tammy, Charleston, SC, 2007-09-24 12:17:11
I was visiting the local VA urgent care for a lung infection. The DR stood across the room to examine me (my mother-in-law was witness). He didn't even listen up close. He ordered a prednisone pack and sent me on my way.
CeeJay, Scranton, PA, 2007-09-20 18:30:47
HIV is our opportunity to empower ourselves as medical consumers! Every state has a Medical Licensing Board and it is THERE that we should direct our concerns each and every time we are faced with compromised care because of our HIV status. I have looked a physician in the eye more than once and said "You're Fired !" because I knew I was not receiving top-notch care. The key is Do Your Homework. Learn as much as you can about treatment options, etc. and show them what makes us survivors
DM, California, 2007-09-19 20:22:12
Not much has changed in the minds of many medical personnel. Went to pick up my HIV meds at a pharmacy connected with my health plan, the pharmacy tech was pleasant, got my prescription, looked at it and then his demeanor changed radically, pushed it at me, I signed the charge slip and he didn't even say thank you. I have learned, in many cases once someone knows you have HIV, you are no longer a person, just a virus carrier.
"I'm HIV positive and diabetic (as well as have high cholesterol) and some of my meds specify taking them with 'high fat foods' which I have to do twice a day. I've eaten as healthy as possible, but when it comes to high fat foods, I am in a quandary...about what to eat sometimes..."
