A while back in my district, a public school teacher fainted when his wife stumbled upon him collecting his free monthly HIV antiretroviral (ARV) medication allotment.
The poor man was promptly ferried in an ambulance to a hospital 49 miles away. He was ultimately revived. The reason for his panic was cruel. Our beloved teacher was collecting ARV medication secretly for 17 months, not wanting his spouse to know.
You might feel the urge to express outrage over the teacher’s behavior of being diagnosed with HIV and embarking on treatment without telling his partner, but here is another piece of the puzzle before you judge.
Leaking HIV Data
In Zimbabwe, the country where I live and where the teacher lives, some underpaid nurses or hospital clinicians—the professionals who dispense ARV drugs to the public—are at the forefront of leaking patients’ names to their WhatsApp groups, pub-drinking friends, or church friends.
“Do you know so-and-so, your neighbor, comes to my clinic monthly for ARVs?” a midwife who has since left Zimbabwe for better money to practice abroad in England once asked me, shocking me with her casual disregard for the data of patients under her care.
Some dishonorable health care workers trade this sensitive information for a small tip. A nurse once asked me to buy her a $5 drink in the bar in exchange for showing me names of local celebrities who were picking up ARV medication from her clinic. “For a $5 drink, I’ll show you a paper trail of prominent community celebrities collecting ARV drugs at my clinic,” she said to me.
In regions like Canada or the European Union where sharing patients’ clinical data is strictly protected by law, this nurse friend of mine would have likely been stripped of her practice license. Not so much here in Zimbabwe. But it’s not only the absence of punitive rules that fuels this amoral behavior.
“In Zimbabwe, the Public Health Act clearly prohibits unlawful sharing of patients’ records without consent,” Thabisa Sibanda, MBchB, MSc, a senior infectious-diseases specialist and health care manager who hails from Zimbabwe but now practices in Melbourne, Australia, told TheBody. Sibanda continued, “These few bad-apple health care workers are committing a crime by leaking such confidential information.”
The motives apart from mischief are usually financial. Health care professionals are inadequately paid in Zimbabwe. In 2020, amidst a job strike, the leader of Zimbabwe Nurses Association disclosed that the lowest-paid nurse was pocketing a lowly $73 USD a month. Hardly a year goes by without nurses and physicians striking over woeful earnings or lack of necessities like personal protective equipment.
In some notorious WhatsApp groups, nurses are “group administrators” and solicit bribes of $5 to spill the names of HIV treatment takers at their clinics. In 2010, a disturbing report by human-rights lawyers revealed scandalous allegations of nurses asking for bribes to give out ARV pills that are normally free.
Weaponization of HIV Data
What happens to the data that the nurses leak? It is often resold to scandalous online and print tabloids or groups on Facebook or WhatsApp. There are often consequences for victims of such data violation. Such improperly disclosed HIV privacy data can be used to blemish victims and undermine them in political contests or employment competitions. For example, in September 2018, a well-known lawmaker publicly took an HIV test and posted his results online to dull social-media gossip hawkers who were scandalizing him about his HIV status.
According to the World Health Organization (WHO), 1.4 million people are living with HIV in Zimbabwe, and 86% of those with HIV are enrolled in a free ARV drug medication program. This places Zimbabwe in the top-10 list of countries in sub-Saharan Africa where the infection is steepest.
Consequences of HIV Data Leaking
So, some people who are publicly outed in WhatsApp groups as taking ARV medicines sometimes stop visiting clinics every month to collect drugs, which leads to medicine defaults and multi-drug-resistant HIV strains.
Personally, I know firsthand how disrespect of clinical patients’ data can discourage men, especially, from seeking quick treatment for sexually transmitted infections (STIs).
Someone known to me almost got their testicles damaged when for two months they hid a fast-maturing gonorrhea infection from their wife. They feared to visit the clinic out of embarrassment that nurses would mock them and splash the news of their infection across our tight community.
“Such is the likelihood of developing untreatable gonorrhea, when patients delay visiting the hospital out of fear their names would be leaked to WhatsApp groups,” said Yasin Kakande, a technology rights activist and TEDx speaker, in a phone interview.
The damage could seep into society more broadly. The WHO Global Action Plan on HIV Drug Resistance July 2018 report reveals that up to 130,000 people taking ARVs in Zimbabwe have developed clinical medication resistance. If people feel their HIV-status data are being mishandled by clinicians, they could (out of embarrassment) avoid getting tested or coming to hospital to collect medication rations. This potentially causes defaults, which are associated with developing multi-drug-resistant HIV strains. It is not clear whether embarrassment from leaked HIV data is a direct factor, but the WHO mentions Zimbabwe as one of the countries with significant HIV-drug-resistance incidences. About 10% of patients starting ARV treatment in Zimbabwe already have such resistance.
These digital leaks of HIV privacy data force some, like the teacher who fainted, to travel 100 miles away from nearby clinics just to collect their ARV drugs in tight secrecy, far from the prying eyes of local nurses, spouses, or sexual partners.
“The damage is obvious here, with patients wanting to travel long distance at extra cost, as some are more likely missing out medication supplies when they run out of transport money or as a result of COVID-19 travel lockdowns or incapacitation to illness,” Sibanda added. “This is very sad. It’s likely to worsen the HIV stigma.”
We all, as a community, get clinically harmed if someone is hiding their ARV under the pillow hoping their sexual partner won’t know.