13 Reasons Why is an American teen drama series from Netflix. The fourth and final season landed on the platform earlier this month and the season finale has divided fans, and angered some people living with HIV.
I’ve never watched the show, in fact until I saw the furore breakout on ‘HIV Twitter’ I’d never even heard of it. The fact I could watch the HIV/AIDS storyline in short YouTube clips in less than ten minutes is a major part of the problem.
The story was rushed, the rapid decline you see in Justin’s health largely unrealistic (he’s the character diagnosed with the virus), and the script and dialogue displayed piss poor medical practice.
I take issue with a lot of the criticism towards to show solely being focused on the fact they decided to kill the character, with viewers witnessing him dying in a hospital bed after collapsing at the high school prom.
Yes effective medication exists, yes this enables people living with HIV to live well, to have healthy lives and protect their sexual partners from getting the virus, but there are lots of people who still experience poor health outcomes. Access to treatment isn’t guaranteed, and too many people are still diagnosed late and many people are still too afraid to test for HIV.
People with HIV are still dying. Two close friends, who had a huge impact on my life died in 2019. And it was the anniversary of the memorial for one of those friends yesterday that led me to want to learn more about this show and the controversial subplot.
How many deaths are recorded in people living with HIV?
Global deaths
Data isn’t recorded in the same way in every country. It is important to pay attention to how data is defined and reported – the direct sources of surveillance information should outline this.
UNAIDS report that AIDS-related mortality has declined by 33% since 2010 and AIDS-related deaths have been reduced by more than 56% since the peak in 2004. According to their 2019 factsheet around 770 000 [570 000–1.1 million] people died from AIDS-related illnesses worldwide in 2018.
They report 13,000 [9,400–16 000] AIDS-related deaths in 2018 from their ‘western and central Europe and North America’ region.
USA
The Centers for Disease Control and Prevention (CDC, the US health protection agency) reports on deaths due to any cause, so not necessary AIDS-related or with any connection to an individual’s HIV status.
Their data reports 15,820 deaths in 2018 among adults and adolescents with diagnosed HIV in the US and dependent areas. Justin’s death is of course fictitious but in 2018 the CDC recording the following number of deaths in the USA based on the following transmission categories across all men:
- Male-to-male sexual contact: 6,578
- Injection drug use: 2,114
- Male-to-male sexual contact and injection drug use: 1,378
- Heterosexual contact: 1,528
To put these figures into context the CDC reported 1,040,352 adults and adolescents were living with diagnosed HIV infection in the United States and 6 dependent areas in the same year.
UK
Public Health England (PHE) reported 473 deaths in people living with HIV in 2018. Using a calculation of between 22-47% of deaths being attributed to AIDS-defining illness they estimate this number to be a maximum of 222. Mortality rates in the UK are highest in those with HIV who inject drugs. Key commentary from PHE is their advice that those diagnosed with HIV late are at increased risk of developing an AIDS-defining illness and continue to have a more than 10-fold increased risk of death in the year following their diagnosis.
Controversy sparks interest
Was this season poorly written? Or were the producers well aware these scenes would be debated amongst fans, or encourage new interest in the series? As I started to write this piece I almost tuned into the episode myself. Maybe being decommissioned after four seasons had an impact on how they wanted to share Justin’s story.
Experiences with HIV aren’t always positive, there isn’t always a happy ending. Must the media always depict a favoured outcome, or one that fits a palatable narrative for today’s health promotion messaging? No. Do TV and film have a responsibility to portray issues through a sensitive, realistic and factually correct storyline? Absolutely. Soaps, dramas and films can take health messaging to whole new audiences and reach people campaigns will never touch, especially in the context of how under-funded HIV now is in 2020.
HIV storylines through TV and film largely only tackle death and loss if they’re set before the advent of effective combination antiretroviral therapy in the second half of the 1990s. Shows like Pose and films like Rent have attempted to sensitively engage audiences in the pain and anger that people losing loved ones to AIDS experienced.
It is interesting to see that 13 Reasons Why tried to break this pattern by engaging this narrative in modern times, but the delivery was poor, and not acceptable. The writers had an opportunity to tell a different type of story. By all accounts, in failing to give time to the storyline, and include information of what Justin’s life could have been like had he tested sooner, they ultimately didn’t manage to educate their audience about HIV and also left viewers dissatisfied with the portrayal of the character’s demise.
Alex Sparrowhawk 