In watching the film How to Survive a Plague and reading Steven Epstein’s piece on AIDS activism and clinical trial reform, it is clear that the fight to provide care and treatment for those suffering from AIDS has been extremely difficult. Both of these also demonstrate the strong linkage between activism for HIV/AIDS research and treatment is strongly linked to identity, as the 1980s AIDS movement became led by affected individuals that often identified with the gay community. Because AIDS became associated with things like sex and drugs, AIDS became heavily stigmatized and the connection between identity and illness became problematic.   The AIDS movement revealed many systemic issues in the way research is conducted and how those with stigmatized conditions are treated by the medical community and society as a whole (Epstein).  The HIV/AIDS epidemic has been a public health issue for several decades, and though great strides have been made in developing drugs to treat AIDS, there is no cure and an effective vaccine has yet to be developed.   Why has vaccine and drug development for HIV/AIDS been such a long and challenging process? Once available, how will stigmatization and bias toward HIV/AIDS impact vaccination efforts? 

Overview on HIV and AIDS

Since first identified in the US during the 1980s, human immunodeficiency virus (HIV) has remained a public health concern and affects millions of people across the globe.  HIV is a virus that causes flu-like symptoms in the acute stages.  However, if left untreated HIV weakens a person’s immune system such that the infected person develops AIDS (acquired immunodeficiency syndrome).  Once a person progresses to AIDS, they typically only live for a few years, and are at serious risk for contracting opportunistic pathogens that cause fatal infections in a person with AIDS (“Symptoms of HIV and AIDS: What to Look For?”).  HIV is transmitted through contact with bodily fluids and men who have sex with other men, particularly black men, are most affected by HIV, but anyone can contract HIV if exposed (Levine).  

Challenges to Treatment

HIV’s association with and increased incidence in the gay and bisexual communities complicates treatment.  Homophobia has historically played a large role in creating HIV stigma and continues to play a role today. During the AIDS movement of the 1980s many, including government and church officials, judged those with HIV and AIDS, believing that sexual behaviors that contributed to spread the virus were immoral (How to Survive a Plague).  Homophobia prevents many from getting tested for HIV, has caused resistance to pre-exposure prophylaxis, a newer preventative medication for HIV and AIDS, and inhibits safe sex education efforts.  Gay and bisexual men often experience discrimination that causes higher rates of suicide, depression, and drug abuse.  Some lose support from their families after coming out to them which can make them economically disadvantaged, inhibiting their access to healthcare (Halkitis).  Though more people are becoming accepting of the gay and bisexual communities remnants of historic discrimination and homophobia are still evident today and affect these communities’ healthcare especially as a group that remains vulnerable for contracting HIV. 

The difficulty in treating HIV is also due to the biology of this disease.  Unlike other infectious diseases like COVID19 and influenza which are RNA viruses, HIV is a DNA based retrovirus that is less easily targeted by mRNA vaccines.  Specifically, HIV latency phase can prevent HIV from being easily detected.  An HIV positive individual can live for over a decade with latent HIV infection where the virus exists in the body at very low levels (Cure – Science of HIV).  They are still able to transmit HIV with a detectable viral load, but proper medication with antiretroviral therapies (ARTs) can allow a person to have an undetectable viral load that prevents the person from experiencing symptoms or being able to transmit the disease.  However, as a retrovirus, HIV integrates into the infected person’s DNA, so ARTs can prevent replication of HIV, but cannot eradicate HIV DNA from the host.  Thus, those at risk for contracting HIV must be regularly tested and positive individuals must monitor viral loads to understand their risk for developing AIDS and whether they can transmit the virus to others.  With respect to vaccine development, typical antibody neutralization of HIV is challenged by the virus’ ability to evolve and mutate rapidly to evade antibody mediated neutralization.  

As of now, there is no cure for HIV/AIDS.  Antiretroviral therapy (ART) is the most effective strategy to date for HIV management.  Since the start of the HIV/AIDS epidemic, nearly 24 different pharmacological agents have been approved for treating HIV and work by preventing viral replication.  In addition to ART, pre-exposure prophylaxis (PrEP) was approved in 2012 and is highly effective at preventing HIV infection.  Current work is aimed at developing a vaccine for HIV especially as mRNA vaccines have shown great promise for the COVID19 pandemic.  Moderna and the National Institute of Allergy and Infectious Diseases are currently testing mRNA based HIV vaccines in phase 1 trials.  Though initial data from these trials, an additional 5-10 years of trials must be conducted before these vaccines can become widely available (Vesper).   

Enacting an Effective Vaccination Campaign

Beyond overcoming biological challenges in developing an effective vaccine, combating systemic issues and likely opposition to HIV vaccination will be a major concern in disseminating the vaccine to the population.  First, HIV stigma, homophobia, and embarrassment  may prevent people from wanting to get vaccinated.  Many might think vaccination is not necessary for them because it is only common in the gay and bisexual communities, and if they do not identify with those communities they might be reluctant to get vaccinated.  Advocates for improved HIV/AIDS treatment development efforts suggest investing in community engagement and behavioral science to increase reception to vaccination.  With more people receptive to receiving vaccination the social risk a person takes in getting vaccinated decreases.  The COVID19 vaccination effort was wildly successful because public health officials and epidemiologists were able to generate excitement around getting vaccinated and brought millions of vaccines to people in a coordinated effort.  To obtain similar success with HIV vaccination, significant work would need to be done in educating the public about the benefits of vaccination and reducing stigma and perceived social risk surrounding vaccination.  In addition, ensuring that the public has access to vaccination is critical to ensuring success of an HIV vaccination campaign.  This could be accomplished by creating a public vaccination program for an HIV vaccine or by expanding insurance plans to cover an HIV vaccine.  A lack of a federal vaccination program would present challenges in ensuring vaccines reach uninsured people, especially as many at risk for HIV may not have strong health insurance.  A final consideration in bringing vaccination to the public is overcoming vaccine hesitancy.  A significant number of Americans have become wary of vaccines such that the WHO has identified hesitancy to vaccinate as a top ten global health threat.  Even if researchers and vaccine developers can overcome scientific barriers in developing an HIV vaccine, combating systemic issues and societal reluctance to vaccinate will be an equally challenging factor in the vaccine’s success (Bose).  

Levine, Hallie. “6 Surprising Things You May Not Know About HIV/AIDS Today.” Content Lab U.S., 15 Mar. 2023, www.jnj.com/innovation/6-surprising-things-you-may-not-know-about-hiv-aids-today.

Conclusions 

Currently 1.2 million people in the United States have HIV and over 18,000 people died of HIV in 2020 alone (“HIV And AIDS Trends and U.S. Statistics Overview”).  The battle for effective therapies for HIV/AIDS has been ongoing for decades, and without better therapies, people will continue to suffer from this disease especially as climate change will increase opportunistic pathogens that contribute to deaths in the coming years.  As vaccination is one of the most effective ways to prevent death for most diseases, an HIV vaccine would significantly improve the status of HIV positive individuals (Ten Threats to Global Health in 2019).  

However, just developing the vaccine is not enough, and strategizing ways to vaccinate the public will be critical in the vaccine’s success.  With the existence of vaccine hesitancy among Americans, public health officials must properly educate Americans on HIV and the efficacy of the future vaccine.  Additional work must be done to de-stigmatize HIV/AIDS to increase reception to an HIV vaccine and increase the number of vaccinated individuals.  Education is incredibly powerful in helping Americans understand the severity and complexity of this epidemic.  In anticipation of a vaccine, advocates must continue the momentum begun in the 1980s in support of HIV/AIDS treatment and care.  

References:

Arts, Eric J., and Daria J. Hazuda. “HIV-1 Antiretroviral Drug Therapy.” Cold Spring Harbor Perspectives in Medicine, vol. 2, no. 4, Cold Spring Harbor Laboratory Press, Apr. 2012, p. a007161. https://doi.org/10.1101/cshperspect.a007161.

Bose, Devi Leena. “Preparing Society for a HIV Vaccine.” Nature India, Nature Portfolio, May 2022, https://doi.org/10.1038/d44151-022-00050-4.

Casadevall, Arturo. “Climate Change Brings the Specter of New Infectious Diseases.” Journal of Clinical Investigation, vol. 130, no. 2, American Society for Clinical Investigation, Feb. 2020, pp. 553–55. https://doi.org/10.1172/jci135003.

Cure – Science of HIV. scienceofhiv.org/wp/cure/#:~:text=HIV%20is%20so%20difficult%20to,detected%20by%20the%20immune%20system.

Epstein, Steven. “The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials.” Science, Technology, & Human Values, vol. 20, no. 4, 1993.

Halkitis, Perry N. “Discrimination and Homophobia Fuel the HIV Epidemic in Gay and Bisexual Men.” https://www.apa.org, www.apa.org/pi/aids/resources/exchange/2012/04/discrimination-homophobia.

“HIV And AIDS Trends and U.S. Statistics Overview.” HIV.gov, www.hiv.gov/hiv-basics/overview/data-and-trends/statistics.

How to Survive a Plague. Directed by David France, Public Square Films, 2009.

Levine, Hallie. “6 Surprising Things You May Not Know About HIV/AIDS Today.” Content Lab U.S., 15 Mar. 2023, www.jnj.com/innovation/6-surprising-things-you-may-not-know-about-hiv-aids-today.

“Symptoms of HIV and AIDS: What to Look For?” HIV.gov, www.hiv.gov/hiv-basics/overview/about-hiv-and-aids/symptoms-of-hiv.

Ten Threats to Global Health in 2019. www.who.int/news-room/spotlight/ten-threats-to-global-health-in-2019.

Vesper, Inga. “Cautious Optimism for Trials of mRNA-based HIV Vaccine.” SciDev.Net, 30 Mar. 2022, www.scidev.net/global/features/cautious-optimism-for-trials-of-mrna-based-hiv-vaccine.

Through the Contemporary Concerns in Medicine course, we have learned about flaws in the United States healthcare system and have determined that current policies do not provide high quality care for all people.  One particular group that receives inadequate healthcare is Americans living in rural regions of the country.  Among the worst off are Native Americans living on reservations.  

In high school, I traveled to Pine Ridge, South Dakota, one of the largest of the 326 Native American reservations on US territory (Indian Affairs (IA)).  This was an immersive trip and part of my high school’s effort to educate students on disadvantaged communities within the United States.  In learning about the conditions on the reservation, I was most surprised to learn about the poor healthcare available on the reservation and the diminished healthcare outcomes for Native Americans living on the reservation.  Taking both the knowledge I learned from my travels to Pine Ridge, and our discussions on disparities in the U.S. healthcare system in this class, it is clear that the Pine Ridge reservation is an example of how the US healthcare system does not support all people living in this country.  

The Pine Ridge Reservation was established in 1889, encompasses 2.1 million acres of southwest South Dakota, and is located near Rapid City, South Dakota and Badlands National Park (Strickland).  Roughly 18,000 people live on the reservation with the majority of residents identifying as part of the Oglala Lakota Native American tribe who consider the Black Hills of South Dakota their ancestral lands (Pine Ridge Indian Reservation Facts | Re-Member).  People living on Pine Ridge have some of the worst health and are among America’s poorest with a per capita income of $8,768.  Life expectancy on the reservation is the lowest in the entire U.S. with women having a life expectancy of 52 years and men having a life expectancy of 48 years (Shift).  89% of people on the reservation are unemployed, and a reported 53.75% live in poverty, and some estimate the poverty rate to exceed 80% (Pine Ridge Indian Reservation Facts | Re-Member).  Additionally, Native Americans on Pine Ridge see an excess of tuberculosis, infant mortality, suicide, alcoholism, cervical cancer, diabetes, car crashes, and unintended injuries (Shift).  Further, very few hospitals exist on the reservation and within the surrounding area, meaning residents have to travel great distances for care.  Only one true hospital exists on the entire 2.1 million acre reservation which is the Pine Ridge Hospital.  Despite being responsible for a population of 18,000 people, this hospital has only 45 beds and 16 physicians (Pine Ridge Service Unit | Healthcare Facilities).  The available care is still significantly worse than care received at other hospitals.  In 2017, the Centers for Medicare and Medicaid Services ended the provider agreement with Pine Ridge Hospital, preventing the hospital from being able to bill Medicare for services.  This decision was made due to reports of misdiagnoses and inadequate care that put patients at risk for “imminent injury, serious harm, death or impairment” (Abourezk).  The combined effects of extreme poverty and limited access to adequate care causes Native Americans on Pine Ridge experience extremely poor health.

Disparities in healthcare are caused and exacerbated by a variety of factors, including a lack of access to insurance, inability to afford medical care due to cost-sharing, geographic barriers, illness-based disparities, and institutional racism (Dickman et al).  All of these issues can be seen on the Pine Ridge reservation and contribute to the decreased health outcomes for Native Americans.  At present, the US has no national health care plan, and healthcare is primarily tied to employment  (Shmerling).  For the people in Pine Ridge, 89% of people are unemployed, meaning most do not have reliable health insurance or must rely on Medicaid for insurance.  Even for those who are insured or qualify for Medicaid, cost-sharing and out of pocket costs for specialty services can be expensive and not feasible for the many residents of Pine Ridge who live in poverty. As is common with healthcare in many rural regions, Pine Ridge has extremely few healthcare facilities, and aside from the Pine Ridge hospital, there are only two other facilities on the reservation with limited providers and services (Pine Ridge Service Unit | Healthcare Facilities).  

Roland left the reservation for the first time in his life in April, when he was airlifted to a hospital in Rapid City for an emergency surgery after he slipped in the snow and shattered his hip while chopping firewood. Only able to move with the help of a walker, Roland, who wears a dirt-covered jacket and repeatedly pulls up his oversized jeans as they sag from his waist, says he will never be able to pay the $2,000 in medical bills through the small amounts of cash he gets doing odd jobs for neighbors and ranchers.

Strickland

Additionally, several of the illnesses plaguing Pine Ridge residents such as substance abuse and mental health conditions are not adequately treated for and exhibit illness-based disparities.  With limited health centers and practicing physicians, treatment for psychiatric care is limited in Pine Ridge despite the widespread incidence of mental health conditions and substance abuse among residents.  Psychiatric care is oftentimes an out of pocket cost not covered by insurance plans, meaning low income families may not be able to afford these services (Dickman et al).  Systemic racism also affects Native Americans on reservations.  During the U.S. westward expansion, Native Americans were forcibly removed from their ancestral land and placed on reservations.  Beyond this, Native American communities have experienced massive injustice, including massacres such as the 1889 Wounded Knee massacre at Pine Ridge and placement in conversion schools.   For decades, the U.S. government did not provide healthcare to Native Americans despite stipulations in reservation treaties dictating the government must provide for these needs.  This history of oppression has placed them at an economic disadvantage, and to this day federal programs and infrastructure on reservations are underfunded and underdeveloped.  These systemic issues have direct effects on the health of Native American people (Ferguson and Solomon et al).

The present-day poverty gripping many indigenous communities – on and off reservations – is firmly rooted in the historical laundry list of massacres, ethnic cleansing, land theft and broken treaties endured by indigenous people in North America.

Strickland

Native Americans experience significant problems in accessing healthcare and experience worse health outcomes than the majority of people living in the United States.  This is a serious injustice that contributes to massive suffering among Native American communities and must be addressed.   Many initiatives from well-known organizations are in progress to address the social determinants of health that apply to rural communities such as efforts by the Association of American Medical Colleges to educate new physicians on healthcare in rural regions and how to treat patients in rural areas.  Additionally, the US Department of Health and Human Services included rurality as a social factor that affects health in its report to Congress to inform Medicare purchasing programs (Social Determinants of Health for Rural People Overview – Rural Health Information Hub).  However, in discussing the issue of health disparities in rural communities, the significant disadvantages that Native Americans face are lumped together with the larger issue of inadequate rural healthcare.  There is a lack of awareness and understanding of the considerations specific to Native American reservations, especially with respect to healthcare.  

The problem of healthcare on reservations is vastly complicated, involves the interplay of economic and social factors, and is rooted in historic mistreatment of the Native American community.  In my opinion, a critical first step in rectifying healthcare disparities is increasing the number of practicing physicians on reservations.  This could be accomplished by incentivizing physicians to work in Pine Ridge or by encouraging and providing access for community members to gain an education to become a physician.  Additional work could be done in expanding insurance coverage and in tackling extreme poverty occurring on the reservation.  

Severe mistreatment of Native Americans is a part of U.S. history that is not always acknowledged, but still impacts their community today.  Healthcare is a basic human right, and the fact that Native Americans experience barriers in accessing health care due to their initial displacement in the 1800s is disheartening and adequately addressed.  It is important to continue educating people about this issue to reach any progress and improve conditions for these communities who called U.S. territory home well before the majority of Americans.

• References:
• Abourezk, Kevin. “Another Indian Health Service Hospital Placed in ‘immediate Jeopardy’ Status.” Indianz, 6 Nov. 2017, www.indianz.com/News/2017/11/06/another-indian-health-service-hospital-p.asp. 
• Dickman, Samuel, et al. “Inequality and the Health-care System in the USA.” The Lancet, vol. 389, no. 10077, Elsevier BV, Apr. 2017, pp. 1431–41. https://doi.org/10.1016/s0140-6736(17)30398-7. 
• Ferguson, Dana. “Violated: Inside South Dakota’s Native American Health Care Crisis.” Argus Leader, 5 Dec. 2018, www.argusleader.com/story/news/2018/12/05/south-dakota-ihs-indian-health-service-history-native-american-healthcare-crisis/2128151002. 
• ​​Indian Affairs (IA). “Frequently Asked Questions | Indian Affairs.” Indian Affairs (IA), www.bia.gov/frequently-asked-questions#:~:text=There%20are%20approximately%20326%20Indian,%2C%20communities%2C%20etc.
• “Pine Ridge Indian Reservation Facts | Re-Member.” Re-Member, www.re-member.org/pine-ridge-reservation. 
• “Pine Ridge Service Unit | Healthcare Facilities.” Great Plains Area, www.ihs.gov/greatplains/healthcarefacilities/pineridge. 
• Shift. “What Led to Health Disparities for Native Americans on the Pine Ridge Reservation — and What Can Nurses Do About Them? – SHIFT.” SHIFT, 10 Aug. 2022, www.shiftnursing.com/articles/pine-ridge-reservation. 
• Shmerling, Robert H., MD. “Is Our Healthcare System Broken?” Harvard Health, 13 July 2021, www.health.harvard.edu/blog/is-our-healthcare-system-broken-202107132542. 
• Social Determinants of Health for Rural People Overview – Rural Health Information Hub. www.ruralhealthinfo.org/topics/social-determinants-of-health#address-issues. 
• Solomon, Danyelle, et al. “Systemic Inequality: Displacement, Exclusion, and Segregation – Center for American Progress.” Center for American Progress, 14 Feb. 2023, www.americanprogress.org/article/systemic-inequality-displacement-exclusion-segregation. 
• Strickland, Patrick. “Life on the Pine Ridge Native American Reservation.” Human Rights | Al Jazeera, 2 Nov. 2016, www.aljazeera.com/features/2016/11/2/life-on-the-pine-ridge-native-american-reservation