Continuity in the AIDS Epidemic

The early days of the AIDS epidemic seem incredibly distant and foreign to our generation today, for both college students and young adults alike. The first report published on AIDS came after the publication of a Morbidity and Mortality Weekly Report (MMWR) description of five cases of Pneumocystis carinii pneumonia (PCP) among homosexual men in Los Angeles. The confusion drawn from what the nature of the illness and what caused it was attributed to how PCP was generally exclusively limited to those with cancer or other forms of severe immunosuppression. As the Center for Disease Control continued to receive reports of PCP among other opportunistic infections and cases of Kaposi’s sarcoma, a Task Force was created to conducted epidemiological investigations. Meanwhile, the public refused to acknowledge the severity of this pandemic, believing it to only live amongst homosexual men. Those that acknowledged it referred to it as the “gay plague” or “gay cancer,” considering that AIDS is characterized by the appearance of blue-grey skin tumors. When news sources discussed AIDS, they would call it Gay-Related Immunodeficiency Disease (GRID). The public would only grow to realize later that cancer could not be “gay” or “straight,” and that these characterizations would limit our ability to properly address this global epidemic.

Since the 1980s, a series of changes have taken place in several topics ranging from attitudes, stigma, treatments, and policies. Our progress in epidemic response and preemptive treatment has been so astronomical that those born after HIV flooded the nation, or those too young to remember it, can hardly picture a time when these policies and practices were not routine. The progress since then has not only been limited to our fight against HIV, but it has also served as a compass for future pandemics. Although our discussion is limited to the continental US, we still acknowledge the role HIV plays in various countries as it is a global pandemic. The advancements made since have also been adopted into other places, but there is still a long way to go. By analyzing the changes that have occurred since the beginning of the AIDS pandemic, we seek to convey our perspective about the early days and spin some of those themes forward. The history of the response to HIV poses one overarching question: how did an infectious disease transform into a chronic disease?

Stigma encompasses one of the most complex and greatest barriers to proper healthcare for individuals living with AIDS. The attitudes that were presented in the 1980s, some of which persist today, stalled the procession in understanding the significance of this epidemic. The disproportionate impact of AIDS on homosexual and bisexual men propagated an anti-gay bias in society, which thereby led to counterproductive responses from healthcare agencies, the public, and the government. Such negative responses included the HIV travel and immigration entry ban in 1987 and the discouragement of homosexual activity in many public schools nationwide. A significant component of the fear surrounding this epidemic was largely due to a lack of knowledge and therefore a concern over contagion. Many people believed that HIV and AIDS were always associated with death and caused by behaviors, such as homosexuality and drug use, that were considered to be taboo in several cultures. At the time, it was considered a personal irresponsibility causing many to believe it was not their concern. Although several policy makers question the prevalence of HIV stigma presented today, many polls argue that its presence remains strong. Approximately 22% of Americans believe that AIDS is not a concern for them or their families, while 70% of teens do not have personal concerns about getting AIDS. While the theory of transmission through casual contact has been debunked, the interference presented by earlier attitudes have delayed a better understanding of HIV and AIDS.

Early stigma prevented people from being tested due to a fear of marginalization and a loss of hope. As there was no treatment plan during the 1970s, individuals did not feel compelled to subject themselves to the societal consequences of their condition. This resulted in a significantly quicker spread of the epidemic as it was not lawfully required for individuals to disclose their status prior to intercourse, and a great number of people did not even know their status.

Continuity in the HIV and AIDS epidemic can be viewed by understanding the history of the epidemic’s treatment. Since the original discovery of the virus, more knowledge has been gained. What was previously linked to uncommon infections, such as pneumocystis pneumonia and Kaposi’s sarcoma, is now a disease in its own right. As more targeted treatments are developed, doctors and researchers have been able to better treat their patients. Those currently living with the disease take medicine that slow the development of the virus. These drugs, generally referred to as antiretrovirals (ARTs), were first developed in the mid-1990s. This form of treatment presents a stark contrast to the earlier technique that focused on stalling death by simply treating other infections. There are currently two main types of HIV vaccines being tested: preventative and therapeutic. These vaccines seek to accelerate the immune system in finding the infected cells and killing them, and would also work to limit or entirely stop the virus from making copies of itself when exposed. However, the sustained component in treating HIV is entirely preventing it in the first place. Preventative measures such as pre-exposure prophylaxis (PrEP) is heavily publicized and encouraged for people at high risk for HIV. PrEP reduces the risk of contracting the virus through sex by 90% and through needles by more than 70%. Testing has also been made more accessible to underprivileged communities considering that local clinics have started providing free testing days. Despite challenges presented throughout the epidemic, significant progress has been made and applied to other prevention methods.

Through treatments such as these, disease management has greatly been improved. This progress has been seen in other epidemic crises as well. While a treatment plan in areas such as the United States may be effective, they may not produce the same results in locations with less access to resources. Factors such as schooling, access to local clinics, and poverty levels (among other factors) highly influence the response to conditions of HIV and AIDS. They also play a role in determining how to prevent and educate local communities on their HIV status. Questions such as who should be tested are tied to age and risk factors; however, the general recommendation is that all individuals between the ages of 13 and 64 should get tested at least once. All of these components tie together to create a comprehensive treatment plan that has since evolved alongside the policies that support it.

There are many different policies in action that tint the lens through which HIV and AIDS are currently viewed in society. The Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 both classify HIV and AIDS as disabilities, as opposed to explicitly stating that they are transmittable diseases. This has the effect of allowing the public to be aware of the chronic nature of these diseases. This is the polar opposite of the panic that had arisen due to the unknown origin of the abnormally aggressive, life-threatening, opportunistic infections that characterized he first known cases in the HIV and AIDS outbreak.

Additionally, there are 33 US states that criminalize the intentional or known exposure of HIV to another individual. Twenty-four of these states require disclosure of HIV positive status to all sexual partners, fourteen of these stages oblige disclosure to needle-sharing partners, and eleven of these states prohibit other behaviors, such as biting, spitting, or throwing bodily fluids by individuals who have HIV. In 28 of these states, all HIV-specific criminal laws are categorized as felonies; in three states, the exposure is not a crime (although it can be an additional factor in another related crime); and in two states, it is simply counted as a misdemeanor, not distinguishing between high or low threat of transmission. In a closer examination of which states are enacting these laws, there is no specific order to which states have HIV criminalizing policies based on population density of high-risk individuals. For example, New York does not have any HIV criminalization laws, despite being a hotspot for the original outbreak; Alabama also lacks any HIV-specific policies regardless of the fact that there is a notably high rate of HIV-positive individuals in the southern United States.

After a courageous young man named Ryan White was diagnosed with AIDS following a blood transfusion, he was forced to fight for this right to return to school. He eventually became the face of public education about his disease. Ryan White implemented changes in the movement, revealing to the public that this disease was not marginalized to a single race, age, or sexuality. It was through gaining more knowledge that individuals finally began to realize the generality of this issue, which resulted in treatment plans becoming more adept.

It is significant to note that in 1990, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act required all states to have criminal laws that were adequate to incriminate any HIV-positive individual who knowingly exposed another to HIV. These laws have the potential to alleviate some of the stigma that high-risk populations are all affected by requiring individuals to report their status. However, there are other policies in place that could reinforce these negative assumptions that HIV is particular to a group of people, that group being homosexual males in this case. Previously, the 1992 memorandum, “Revised Recommendations for the Prevention of Human Immunodeficiency Virus (HIV) Transmission by Blood and Blood Products” recommended an infinite deferral for malesseeking-males (MSM). This has since been repealed and the policy now requires a 12-month deferral from most recent sexual contact for MSM. Additionally, there is a 12-month deferral for the most recent contact for a female who has had sexual contact with a man who has sexual contact in the last 12 months.

Furthermore, in the context of the donor history questionnaire that is required in order to donate blood, male or female gender is self-identified and self-reported. This offers the possibility of transgender and non-binary individuals, who could fall into the high-risk population that blood donation services attempt to monitor more closely, to slip under the radar. Because of this, policies have the power to perpetuate the stigma that has persisted since the first known cases of the outbreak: that HIV is a “gay man’s disease.” While the rationale of these policies is clear, that MSM are still the highest risk populations, it is easy to extrapolate that those who are less informed could take away an incriminating message. While policies seek to aid and protect at-risk populations and those in need of blood infusions, the manner in which HIV and AIDS were viewed from the beginning is still palpable, despite the many positive steps that have been made.