Medium Blog: On HIV Exceptionalism

 HIV is often treated differently from other diseases, even sexually transmitted and infectious diseases. This notion gave rise to the term HIV exceptionalism. HIV is treated as beyond “normal” health interventions, and often granted additional privacy and confidentiality measures (Smith et al, 2010). Recently, with changes in the way HIV is perceived by the public and advances in HIV research, HIV exceptionalism has been widely criticized. Additionally, several people have criticized that HIV receives a large and disproportionate amount of attention in global health. In this article, I aim to examine the history of HIV exceptionalism, how HIV exceptionalism is manifested, and criticisms against HIV exceptionalism. 

In 1983, HIV was first isolated from a patient (Merson et al, 2006). Today, over 76 million have been infected with HIV. 38 million people are still living with HIV today (“The Global HIV/AIDS Epidemic,” 2020, page 1). HIV is a disease that disproportionately affects marginalized populations, including men who have sex with men, and people who inject drugs. In some countries, epidemics are found with 30% of individuals being infected (“The Global HIV/AIDS Epidemic,” 2020, page 5). 

In the United States, public health response to the rise in HIV cases was unprecedented. Within the stigmatized groups, certain public health measurements could make HIV even more underground. Because of this stigma, patients will continue to face discrimination in all facets of life. Thus, HIV was reframed as not just a health issue, but also a social issue in which patients are connected with counselling and safeguards for privacy and anonymity. For instance, in many places it is against the law to share HIV test results over the phone/internet. However, as HIV became less of a mass hysteria and antiretroviral treatments were found, HIV was reframed as less as a life sentence, but a disease that could be managed. Yet, many HIV positive people in the US and around the world still continue to be discriminated against and even assaulted and murdered. 

Outside of the United States, HIV/AIDS still remains a critical issue in many parts of the world, especially in sub-Saharan Africa.  UNAIDS was formed in 1996 to collect data about HIV and AIDS around the world, prevent transmission, and provide medical services and care. In 2003, there was over $61.1 billion invested in global development for HIV/AIDS. Controlling HIV/AIDS was seen was being able to control a host of other issues, such as poverty and debt relief and other diseases (Smith et al, 2010). 

Many people believe that HIV/AIDS programs have been disproportionately represented in public health efforts relative to global disease burden and public health official/scientists’ jobs. Some experts, like Roger England, criticized UNAIDS for “creating the biggest vertical programme in history” and believe that a better public health measure would be to put money into bed nets, immunization, and childhood diseases. He noted that HIV represented 3.7% of mortality but 25% of international healthcare aid (Smith et al, 2010). 

Additionally, many criticisms against HIV exceptionalism think that it creates bureaucratic burden. For instance, special safeguards have to be put in place for sharing HIV data, but we currently have better treatments and understanding as a society of HIV stigma. Advocates against HIV exceptionalism believe that keeping results under a veil of secrecy further stigmatizes the disease rather than accepting it as a chronic illness just like any other illness. 

In my opinion, it is important to address the pressing issue of HIV in the United States and beyond, but also to analyze the systems that are responsible for HIV care critically. Where is the money really going towards? How can we lessen bureaucratic burdens? 

Additionally, are patients ready for more transparency on data reporting or does the risk of being “found out” and the stigma of the disease still necessitate special safeguards? It would be helpful to first examine qualitative studies of current beliefs and perceptions towards HIV before rushing into any new policies. This varies among different cultures and practices. For instance, some cultures believe that someone diagnosed with HIV is responsible for their illness, devaluing patient suffering. This prejudice and victim blame was especially seen in the early years of the epidemic, so it would be interesting to see if and how this has evolved over time or if perceptions have largely remained unchanged.

Thus, HIV/AIDS is a complex issue and incredibly challenging to face. Perhaps we should focus on normalizing HIV public health practices first, such as the growing U=U movement, as opposed to radically changing existing infrastructure overnight. As we approach a new decade, we will need innovative solutions to address the delivery and messaging around HIV/AIDS initiatives. '

- Fan

Sources:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004826/

https://www.kff.org/global-health-policy/fact-sheet/the-global-hivaids-epidemic/#:~:text=Approximately%2076%20million%20people%20have,the%20beginning%20of%20the%20epidemic.

https://www.nejm.org/doi/full/10.1056/nejmp068074#:~:text=On%20June%205%2C%201981%2C%20when,from%20a%20patient%20with%20AIDS.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004826/