by Jack Hazeldine
***Disclaimer: I recognise that the majority of people in the world affected by HIV/AIDS live in Africa, and that the crisis there is distinct from that in the West. As I have only done research into HIV/AIDS in the West, I do not feel informed enough to comment sufficiently on the effects of this pandemic in Africa. I recognise the limits of my knowledge, and welcome comments and responses from readers more educated on the topic than myself.
I am currently writing a dissertation on literature of the American AIDS epidemic, focusing on black gay fiction of the 1980s and 1990s. When researching general statistics about this crisis, I discovered that HIV/AIDS disproportionately affected people of colour to a considerable degree in the United States. Between 1981 and 1986, black people made up 25% of AIDS cases, despite representing only 12% of the U.S. population. Latinos, who represented just 6% of the population at this time, made up 14% of cases.
By 1992, the death rate from HIV infection was three times as high for black men as for white men aged 24-44. Black women, by comparison, were twelves times more likely to die from AIDS-related complications than white women.
Proportionally overrepresented, people of colour were exceptionally vulnerable to HIV/AIDS during the 1980s and 1990s. The causes of this were diverse. Rendered invisible by the government, people of colour were generally denied the education, resources and healthcare necessary to deal with the epidemic. For men who have sex with men (MSM), the prevalence of homophobia in many black and Latino communities prevented them from coming to terms with HIV/AIDS and accessing the support they needed. HIV was also spread through intravenous drug use, common within socioeconomically deprived communities with a high ethnic minority demographic. More generally, HIV/AIDS was falsely regarded as a ‘white’ disease by many ethnic minority communities, a misconception which became dangerous. As white gay men became the face of the American AIDS crisis, the people of colour who (proportionally) suffered the most were ignored and became invisible.
Therefore, when various reports on March 5th announced that a second patient had been effectively ‘cured’ of HIV, I naturally took an interest in the topic.
An article in The Guardian suggests that a London patient has been left HIV-free for 18 months after a bone marrow transplant. This success comes 12 years after a patient in Berlin underwent similar treatment, a man who is still living free from the virus today. I do not understand science at all, but the cure somehow works through a stem cell transplant and gene editing. The doctors in both cases used stem cell donors with a rare genetic mutation of the CCR5 gene that made both patients HIV-resistant. This inspires hope, for editing the CCR5 gene (which lets HIV enter the body) could be a means of curing HIV in the long-run.
Confusing as this is to non-science minded people, the fact that this is a significant medical breakthrough is undeniable. UNAIDS estimates that nearly 22 million people have died of AIDS-related complications since the start of the pandemic, with 36.9 million still living with HIV/AIDS today. It goes without saying that the idea of a cure is both exciting and hope-inspiring.
However, beyond the headlines, this treatment is hardly accessible.
As stem cell transplants carry ‘unacceptable risks’, this procedure can never be offered on a large-scale. The Guardian article also maintains that both patients experienced graft-versus-host-disease. (Non-science minded people: stay with me here). What this means is that the donor immune cells could have attacked both patients’ immune cells, a factor which might have played a role in the decrease in HIV-infected cells. Considering this, the mutated CCR5 gene may not have been enough alone to cure HIV.
Therefore, it is dangerous to misread these articles as promoting a worldwide cure for HIV/AIDS. While this breakthrough may be the first of many steps to solving the problem of HIV on a global scale, there is still a long, long way to go yet.
After reading various articles reporting on this supposed cure, I was inspired to look into how far the racial stratification of HIV/AIDS had progressed since the 1980s and 1990s. In 2017, African Americans still accounted for 43% of HIV diagnoses, whereas Latinos accounted for 26%. Though the Latino population has increased to 18% of the general U.S. population since the 1980s, these minority communities are still undeniably proportionally overrepresented.
Although HIV infections are generally decreasing in the U.S., diagnoses have been increasing for the Latino population in recent years. This is particularly affecting Latino gay and bisexual men under 30. Vincient Guilamo-Ramos, a researcher at NYU, calls this ‘the invisible epidemic’. This issue is not being widely addressed by the Trump administration, journalists or medical professionals - and this neglect is damaging. In 1987, “Silence = Death” became the ominous yet effective slogan of AIDS activism. This message still rings true today, especially for the people of colour most covertly affected by the continuing threat of HIV/AIDS.
So, what can be done?
In many countries, such as the U.S. and Australia, pre-exposure prophylaxis (PrEP) is now available as a way of preventing HIV transmission. This treatment is primarily directed towards MSM, for this group constitute the biggest risk-groups in most Western countries. The presence of PrEP in a person’s bloodstream can prevent HIV from successfully transferring and spreading throughout the body. When taken daily, PrEP has proven in some cases to reduce the risk of getting HIV by more than 90%. This astonishingly high success rate is evidence of an effective preventative measure that can be taken.
Alongside this, for people living with HIV, antiretroviral drugs (ART) can stop the virus replicating in the body. If taken properly (between 1 and 4 pills a day), the viral load can become ‘undetectable’ in the blood, meaning that HIV can no longer be transmitted to other people through sex. Evidently, treatments exist that can both prevent HIV and improve the quality of lives for those already infected.
Nonetheless, despite this potential, how effective are prevention schemes such as PrEP in dealing with HIV amongst people of colour in America? Where 73% of PrEP users are white, only 13% of its users are Latino. Even worse, only 9% are black. Therefore, those who are at greatest risk of contracting HIV are not proportionally accessing the very drug that can help prevent this.
Ongoing cycles of deprivation mean that people of colour are still prevented from accessing the education, resources and medical attention necessary to fight HIV/AIDS. Capitalising on the epidemic, pharmaceutical companies in the U.S. continue to primarily target the white population. As minorities, black and Latino communities continue to be invisible to the government. What results from this neglect is that vulnerable people are being denied aid and attention from those who have the power to create change, Proportionally, PrEP should be targeted most at black and Latino MSM. However, these men evidently aren’t accessing this treatment appropriately.
These intersectional structures of inequality are also prevalent within the UK. Despite being only 1.8% of the general population, Black Africans in 2017 made up 29.1% of those living with HIV. Even worse, PrEP is only provided fully by NHS Scotland. England, Wales and Northern Ireland have started various trials and pilot schemes, yet still do not offer PrEP easily on the NHS.
Certainly, this recent medical breakthrough should inspire hope for developing gene editing as a long-term solution to the problem of HIV/AIDS. What is more important, however, is that the news should provoke us to consider what can be done in the meantime. The responsibility to effect significant change partly lies with pharmaceutical companies, who need to ensure that PrEP and ART are being widely distributed. Governments are equally responsible for making these treatments easier to access. It is our responsibility to encourage these changes: you can directly help by signing this petition for the NHS to make PrEP accessible throughout the UK.
More specifically, ensuring that PrEP is distributed amongst high-risk minority groups is of vital importance. As the ‘invisible epidemic’ of HIV increasingly affects the American Latino community, the necessity for preventive measures becomes even more pressing. This is not isolated to the Latino community, but every socially invisible group who are still suffering from HIV/AIDS. As bleak as it may sound, silence can still = death. But we do have the power to change this.