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Stories of Care Podcast March 30, 2023

The Impact of Stigma on Patient Care: 6 Experiences Shared from the HIV Epidemic and Beyond

The recent outbreak of mpox in the United States was reminiscent of the HIV epidemic that was first recognized in the early 1980s. Both viruses were found in high rates in the gay community, and both highlighted the prejudice and stigma that this community faces. When healthcare professionals do not understand how a virus spreads and makes people sick, there can be a heightened fear of transmissibility and that can affect care at the bedside. The American Medical Association recently spoke with Dr. W. David Hardy, an infectious diseases physician with firsthand experience in both outbreaks, to hear his insights on how stigma can impact patient care.

  1. Stigma was born from lack of knowledge.

    Early in the HIV epidemic, many physicians had no connection with the gay community, and their lack of knowledge and understanding bred fear and prejudice. Watching that stigma play out, however, also drove many young physicians to help this marginalized population. Because of their connection to the community and their history of treating gay patients, many gay physicians found themselves caring for very sick people who were in a very vulnerable position. In doing so, they began to combat some of the stigmas that had developed within the medical community.

  2. Fear of transmission is real.

    HIV was a novel virus that took years to identify. Transmission routes weren’t initially known, leading to fear among health care professionals for their own safety. In contrast, SARS-CoV-2 was fully sequenced within 10 days, thanks to the PCR technology born out of the search for HIV, and transmission routes were determined more quickly. Mpox was a known virus. However, clinicians in the U.S. had very limited experience with it as it has not traditionally been reported here. Despite the differences in these viruses, understanding how they spread and the infection prevention and control measures needed helps to address fear of transmission and leads to more empathetic care.

  3. Leaders came forward to change the narrative.

    In the 1980s, Director of the National Institute of Allergy and Infectious Diseases (NIAID), Dr. Anthony Fauci, recognized that his department was in the position to grant funding to study HIV/AIDS and improve understanding in the medical and research community, while also working directly with impacted communities and activists. Dr. Fauci has since been recognized for being a voice on the side of science and evidence and speaking out against medical disinformation. Actress and activist, Elizabeth Taylor also applied media pressure to destigmatize the disease and the gay community at large.

  4. Nothing can replace human contact.

    Novel viruses, including SARS-CoV-2, HIV and mpox, can raise concerns among healthcare professionals about their own safety. However, health care professionals stepped up and realized that being present for patients – even and especially when there is no effective treatment – can add humanity and dignity to an otherwise difficult situation.

  5. Physicians learned to practice medicine differently because of HIV.

    Initially HIV patients were left in the hospital for many months and health care professionals and administrators were frustrated. Patients wanted to be at home. The HIV epidemic changed how health care professionals approached treatment for dying patients and patients with chronic conditions. Patients, who often had weeks to live, were finally allowed to go home and spend time with their families and friends among familiar and comforting surroundings.

  6. The stigma seen during the HIV pandemic was largely avoided with mpox.

    While fear of the unknown can still lead to the stigma of disease, the overarching stigma seen during the early years of the HIV epidemic didn’t materialize as fully with mpox. The CDC took the lead, and through inclusive language and action, as well as reinforcement of effective infection control recommendations, tried to steer clear of the stigma and prejudice that came so easily before. Public health continues to be imperative in protecting the population from infectious disease outbreaks.

This post provides highlights from episode seven of the Stories of Care podcast, Fighting Stigmas Associated with Infectious Diseases: From HIV to Mpox. To hear the full episode with Dr. Hardy, listen here.

Additional CDC Resources:

Project Firstline is a national collaborative led by the U.S. Centers for Disease Control and Prevention (CDC) to provide infection control training and education to frontline health care workers and public health personnel. The American Medical Association is proud to partner with Project Firstline, as supported through CDC-RFA-CK20-2003. CDC is an agency within the Department of Health and Human Services (HHS). The contents of this article do not necessarily represent the policies of CDC or HHS and should not be considered an endorsement by the Federal Government.


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