The BBC radio documentary mini-series “A big disease with a little name”, released June 2020, is an incredibly moving and informative look at HIV/AIDS from its appearance to the modern day.
AIDS, caused by HIV, was first written about in 1981, in the USA.
The virus — initially “Gay-Related Immune Deficiency, GRID” — disproportionally impacted gay men, and was associated with homosexuality. Hitting a particularly persecuted and in many ways invisible set of people — even more so then than now — worsened its impacts in many ways.
“Straight America” mostly responded with indifference. For many, it was impacting others, people they had distain for, who did distasteful, immoral activities. Simultaneously, it intensified homophobia. Patients were blamed for their suffering, shamed for their sexuality and lifestyle, subject to powerful stigma which still lingers today.
HIV has a long incubation period, allowing wide infection before symptoms appear. AIDS has an infection fatality rate (IFR), without treatment, of near 100%. Covid-19 has an IFR of 1% or less.
Many gay people lost dozens of — previously young and healthy — friends to it. People would nurse their dying lovers through their painful degeneration, knowing that they, too, had it and would (almost) inexorably succumb and die, in turn, and alone.
Homophobia, stigma and disinterest drove a slow response by wider institutions and society to this juggernaut devastating LGBTIQ communities. Homophobia created huge barriers to the necessary public health communication and uptake, as more — slowly — became scientifically understood about ways to limit infection.
Social conservatives, religious leaders, the religious right; Thatcher, Reagan, and others; resisted public health messaging to combat it. They feared it would undermine “public morals”, and “encourage” or “condone” particular behaviour. Many didn't see cause to care about the “immoral” people affected — they were happy to let them die.
The story is not just one of suffering and bigotry. It is also of many people working, fighting, campaigning for better.
Perhaps most inspiring episode is campaigning by “ACT UP”, the “AIDS Coalition to Unleash Power”, in the USA. This brought in gay men from varied backgrounds, some still closeted; numerous lesbian women, and others. Many ACT UP activists had contracted HIV, were fighting with their backs against the wall.
Instead of surrendering in grief and despair, they channelled anger into organising to fight for better.
They won on many fronts, through audacious direct action.
Initial treatments were developed primarily through government funded research, but were sold through private corporations. Through a series of campaigns, activists forced the price down rapidly from $10k/year to less than a quarter of that.
Many changes won had much wider impacts.
ACT UP put a spotlight on women contracting AIDS, previously ignored.
Women were excluded from clinical trials in the USA and elsewhere. The exclusion was often motivated by sexist and religious consideration around women's reproductive capabilities, and wider sexism. Clinical trials were at points the only way for many to access treatment of AIDS. Also, potential medical benefits or harms of certain treatments which disproportionately impact women are better identified without this exclusion.
Campaigning successfully changed research practices. It is now standard practice to compare new treatments to the best available alternative treatments, not simply placebo.
“Needle swaps” for drug injectors have been adopted across the world.
Public health messaging around AIDS, while effective, also forced wider discussion around sexuality and other issues.
Individuals, seeking treatment, were often forced to “come out” publicly as homosexual, confronting homophobia. Forcing the LGBTQI community to rally around to care for each other and fight back in some ways perhaps forged a stronger force to confront homophobia.
The series also looks at palliative care and LGBTIQ community support; the major black market in anti-HIV treatments, the growth of AIDS denialist conspiracy theorists which costs hundreds of thousands of lives, particularly in South Africa; the development of effective treatment; and the situation today.
Today, PEP and PrEP can effectively protect individuals against contracting HIV. Where individuals do contract it, ongoing treatment can make it undetectable, untransmittable, and have no impact on their health or life expectancy. While no cure or vaccine yet exist, it would be possible to eradicate it.
Major stigmas still exist, feed homophobia, and form obstacles to effectively combatting HIV.
The 10 short episodes, two hours altogether, are told through first person narration, interview snippets, by people involved or impacted at the time. Have some tissues handy!
The series is unquestionably sympathetic to victims of HIV, stigma, and homophobia. It doesn't, however, cover the impact on trans women, or on sex workers, who are particularly at risk. It only touches in passing on the epidemic among drug users, in the global South, or differential impacts on people from different socioeconomic background.
It doesn't mention anti-condom campaigning and legislation driven by religious institutions, particularly the Catholic Church. Or draw wider political conclusions — e.g. the need for greater funding for public health research and programs. Nonetheless, it's well worth a listen.