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Stigma and HIV: The people change, but the song remains the same

I’ve been thinking a lot about HIV and stigma this trip after hearing accounts from several health care providers regarding the low availability of healthcare services, especially surgical, here in India for HIV positive patients. The reports have ranged from “we have a partnership with a number of surgeons in the area who will perform procedures for a higher price” to “no one will perform this procedure.” The most impoverished patients are the ones suffering the most from this stigma, as private hospitals will offer procedures but at a higher rate that the patients may not be able to afford. There is some legal recourse for these patients as the Indian government passed an HIV/AIDS bill in 2007 which prohibits discrimination in the work place and in healthcare against HIV positive patients. However there is little to no litigation on these matters as it requires money, and many people living with HIV are impoverished.

One physician we talked to lamented the fact that it was difficult for HIV positive pregnant women to find obstetricians so they built an operating theater in their hospital to perform C-sections, filling a need that was not otherwise being filled. As to why no one will operate on people living with HIV, I heard several explanations from several different clinicians. These explanations ranged from concern for re-using equipment and the need for “extra” sterilization to the desire to avoid excess personal risk. Further some clinicians have suggested that some of the avoidance of treatment is related to the stigma associated with caring for patients with HIV.

Regarding discrimination specifically in india among health care providers Eckstrand et al (2) in 2013 surveyed health care providers (nurses, ward staff and doctors) in urban settings in India to gain a better understanding of the underlying issues driving the stigma against HIV positive people and the extent of the problem. The results they found were startling.

57% doctors, 40% nurses and 71% ward staff surveyed would discriminate against HIV positive patients in low-risk settings where standard precautions would be sufficient to prevent any kind of potential transmission. When asked if they would become patients at clinics that treated HIV positive patients at least half of the participants in all the groups (59% of doctors, 61% of nurses and 50% of ward staff) said they would stop attending, or demand extra precautions, Indicating misconceptions about transmission. This bias is not just present in settings where the risk of transmission exists, there was also evidence of blame and social discrimination: 50% of doctors, 70% of nurses and 83% of ward attendants surveyed felt that patients who acquired HIV through sex or drug use (the main methods, especially in india where the illness is largely spread by heterosexual sex and, to a lesser extent, by IV drug abuse in the north) “got what they deserved”. A worrying 13% of doctors felt that health care workers should have the right to refuse to treat people living with HIV. The discrimination went so far as to say that positive men and women should not be able to marry (41% of doctors, 77% of nurses and 88% of ward staff felt that HIV positive men should not be allowed to marry) and 55% of doctors felt that HIV positive women should not be allowed to have children, despite the advances in medical care to almost ensure that they will not pass the virus on to their children.

There is historical evidence to support the physicians’ concerns over spreading HIV by re-using medical equipment. The beginning of the HIV epidemic in Africa, as well as its propagation in many parts of the world, has been linked and, in some cases driven by, iatrogenic spread from improperly sanitized medical equipment. I just finished a fascinating book “The Origin of AIDS” by Jacques Pepin which proposed a theory for the early spread of HIV in Africa by colonial government programs to eradicate illness (Yaws, TB and many other treatment campaigns). These treatment programs were driven, in part, by the advent of machine made glass syringes which made treatment more accessible to the colonies while at the same time posing the same sterilization conundrum when you have 2 or 3 syringes but are trying to treat 40-100 people in a day; often they were not adequately sterilized between administrations and thus likely contributed to the spread of HIV. However this is (or should be) no longer relevant because of disposable syringes and standardization of sterilization protocols.

We have come a long way in terms of setting up adequate sterilization protocols with proven elimination of pathogens for reusable instruments. The WHO puts out guidelines, as does the CDC (https://www.cdc.gov/hicpac/Disinfection_Sterilization/3_2contaminatedDevices.html) and the CDC recommends, in general, that the disinfectant processes be standardized. This is also known as universal precautions, which assumes that everyone is potentially infected with a blood borne pathogen and that the methods of disinfection should not be tailored to if a patient is known to have HIV or not. In my medical training to date (Which is admittedly limited) that has been my experience. The standard (or universal precautions) should work universally and if there is concern over their effectiveness either they are not being implemented correctly or there is a fundamental lack of knowledge.

Universal precautions are used throughout the US and it is easier to find a willing surgeon to operate on an HIV positive patient there. When I first started writing this blog post I had assumed that in the US there would be some hesitancy and perhaps extra caution when operating on known HIV Positive patients but that this would not prevent the surgery from happening. (Because as a medical student I have been in the OR while HIV patients were being operated on) however when I looked into the data I was shocked. The Williams institute at the UCLA school of law put out the results of a survey they conducted from 2003-2005 where they called up different providers in the Los Angeles county area and posed as patients asking standardized questions regarding availability of treatment for HIV positive patients. What they found was upsetting, 55% of the obstetricians phoned would not provide treatment for HIV positive patients and 26% of the plastic surgeons would not treat HIV positive patients (5).

The law in California prevents discrimination against people living with HIV and mandates treatment unless one of three criteria are met: 1) they would not perform the requested service for a person who was HIV-negative, 2) the requested services would pose a “direct threat” to the safety of the health care provider or the patient, or 3) a legitimate referral to another provider is warranted. The excuses given in the survey included “we are not set up for that here,” and “ the doctor has no experience with that.” In some cases the obstetrics receptionist questioned whether or not the patient wanted to keep the baby. Indicating a startling lack of knowledge and misconceptions about transmission. Further, in order to meet one of the three criteria legally listed above, the respondent should have asked more questions (such as the health of the patient, their CD4 count to ascertain if the procedure would be injurious to the patient) few of these extra questions were asked once it was found out that the patient was HIV positive. This study was from over 10 years ago, i would be interested to see what the misconceptions are like now and what the availability of treatment is. In my limited search I was unable to find newer surveys or articles regarding discrimination in the US, Im sure they are out there and if anyone finds any I’d love to read them.

There is always the threat of accidental injury to the provider when performing an operation and its easy for me to sit here and say that surgeons should not care about HIV status and perform the procedure regardless of status when I, as an internal medicine physician, will have limited potential exposures. To that I would say that any operation is a potential exposure (with 4th generation tests there is still a window of 15-17 days during which a positive patient will not test positive while the virus is present and replicating) and, worse, the unknown HIV positive patients will have high viral loads making their infectivity much higher and stressing even more the importance of universal precautions.

This is a global problem. If even the people who are most educated, and should know the most about HIV and the likelihood of spread will not care for the patients, who will?

We should know better
We need to do better

  1. Rutala, william and Weber. “Disinfection and Sterilization in Health Care Facilities: What Clinicians Need to Know” Clin Infect Dis. (2004) 39 (5): 702-709.
  2. Eckstrand et al “Prevalence and drivers of HIV stigma among health providers in urban India: implications for interventions” J Int AIDS Soc. 2013; 16(3Suppl 2): 18717
  3. http://www.helplinelaw.com/civil-litigation-and-others/RHPI/rights-of-hivaids-patients-in-india.html
  4. http://www.lawyerscollective.org/files/Final%20HIV%20Bill%202007.pdf
    Sears, Brad and Deborah Ho. “HIV Discrimination in health care services in los angeles county”
  5. http://www.bc.edu/content/dam/files/schools/law_sites/library/pdf/content/tremblay_schulman/2006-12-00.Sears_Ho.pdf
This entry was posted in BMC.

One comment on “Stigma and HIV: The people change, but the song remains the same

  1. Swati Shah says:

    Yup, so true

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