It was July 2018, Amsterdam.
Brooke Wurst felt her cellphone buzz in her pocket. Around her, thousands of public health experts were bustling to their next engagement at the International Aids Conference which was being held in the city.
Wurst was frozen in place. She had been waiting for this WhatsApp message.
She’s an entrepreneur who heads up an HIV nonprofit called the Triad Trust. The trust runs a programme for a small nonprofit in KwaZulu-Natal, helping it to deliver SMS reminders to more than 1 000 teens and young people — the messages prompt them to take their HIV treatment.
Wurst had been texting back and forth with one of her colleagues about what she thought was an easy-to-fix glitch in the system.
She anxiously opened the message. It was only 10 words long, but the implications were huge — even deadly.
Wurst remembers her stomach dropping when she read the text: “I was devastated.”
On a bright green pitch, a boys’ soccer team practises their drills ahead of a friendly match.
Siphesihle Zondi, 22, is bounding away from the pitch at the nonprofit WhizzKids United Health Academy and running up a set of wooden steps leading to the organisation’s clinic.
Young people such as Zondi are drawn to the Pietermaritzburg nonprofit with hopes of playing for its soccer league. If they’re lucky, they might even be coached by former Bafana Bafana captain Mbulelo Mabizela, who works for the organisation.
Youngsters come to practise corner kicks and headers, but they also get access to WhizzKids’ computer labs, tutors and books. And they can visit the organisation’s youth-friendly clinic for free treatment for TB, HIV and other sexually transmitted infections (STIs).
Zondi was born with HIV and has been collecting his antiretrovirals (ARVs) at WhizzKids for almost eight years.
“The clinic has become like a second home to me. I hardly ever forget to fetch my pills,” he says.
But some of his peers need reminding.
Globally, almost 40% of HIV-positive people between the ages of 12 and 24 who are on treatment don’t take their medication correctly — they may skip doses or don’t take their treatment regularly to bring the level of HIV in their blood down to low enough levels to live a healthy life, a review of 50 studies published in the journal AIDS found in 2014.
To help remind WhizzKid patients to collect their drugs on time, the organisation uses simple SMS reminders.
When young people come to the clinic, their fingerprints are scanned. Each person’s fingerprint is linked to their medical profile, which logs whether they are on HIV medication, and when they are due to collect their next monthly refill of ARVs.
“As soon as the system picks up [that] someone has missed an appointment to come and fetch their ARVs, they will get an SMS within two days,” WhizzKids country director Gugu Mofokeng says.
And if they still don’t show up, that patient will keep getting messages: One after five days and another one after a month.
Wurst, who invented the tool, explains: “Since many people share phones, messages are discreet to avoid accidentally revealing someone’s HIV status.”
Messages are often in isiZulu and would read something like: “Don’t forget to pick up your parcel at the academy.”
When researchers surveyed almost 300 HIV patients at a public clinic in Brakpan, in eastern Gauteng, they found that about three quarters had never missed a dose. But just under one in 10 patients had skipped between two and four days of treatment in the year that the research was conducted, the 2014 study, published in the African Journal of Primary Health Care & Family Medicine, found.
A 2016 review by the United Kingdom’s Cochrane research network revealed that overall reminder texts improve how well HIV patients take their medicine. This was true whether the messages were short or long, and whether they were sent daily, weekly or only when needed.
Cochrane reviews are widely recognised as one of the strongest types of research reviews in healthcare, sifting through and making sense of all of the scientific evidence on any given topic.
In Pietermaritzburg, Zondi spends so much time at the academy that he can be reminded in person to collect his medication — this means he hasn’t received a reminder SMS in ages.
But then, for a long time last year, neither had anybody else.
Back in Amsterdam, Brooke Wurst was staring at her phone in disbelief.
When a WhizzKids employee had flagged something was awry with the electronic health system she had designed for the organisation, Wurst was sure the solution was as simple as turning the server on and off.
But it turns out, the problem wasn’t electronic at all. It was human error.
“The SMS system hasn’t been topped up in nine months,” Wurst’s colleague texted from halfway across the world.
Wurst was worried.
“How many kids could be struggling because of this?” she wondered.
Mofokeng explains: “We had paid for 500 SMSes, but they were all gone.”
Triad Trust data shows that, without the familiar pings of monthly reminders on their phones, less than a quarter of patients who should have collected their ARVs actually did.
Once the mistake was uncovered, both the WhizzKids and TriadTrust teams rushed to make sure a fresh batch of SMSs was loaded onto the system. In addition, Mofokeng assigned an employee the task of checking weekly that enough airtime has been loaded onto the SMS system.
One by one, reminders started re-appearing on patients’ phones, calling them back to the clinic.
Within a week of the return of the SMSes, the number of patients who were virally suppressed tripled, the organisation’s unpublished data shows.
Viral suppression happens when patients take their HIV medication so well that the virus can no longer be detected in their bodies by viral load tests. Research has shown that it is scientifically impossible for patients who are virally suppressed to transmit the virus.
South Africa’s HIV plan aims to get 90% of people on HIV treatment virally suppressed by 2020. The country’s newest HIV household survey, published in 2018, showed that it is close to reaching this target: 86% of South Africans taking ARVs had undetectable levels of the virus in their blood.
Within a month of the fresh batch of SMSs going out, the number of teens and young people at WhizzKids fetching treatment had doubled.
Wurst concludes: “We could quickly see the real power of ARVs.”
Today, SMS reminders go out without a hitch. But Wurst says there are lessons to be learned: “It’s great to have a tool like this, but if you’re not using it right — it’s worthless.”
A 2018 research review published in the Journal of Medical Internet Research looked at more than 220 studies. Solutions that increased health workers’ workloads, or changed the role they held in facilities by, for instance, making them have to explain new technology, were among those listed as more likely to fail.
Wurst explains: “These tools should help people on the ground spend less time with their eyes on a screen and more time with eyes on a child who needs your help.”
A high turnover of staff was also linked to mhealth solutions’ — mobile technologies such as mobile phones and tablets to deliver healthcare — failure, the research showed.
Mofokeng says this is especially true in the nongovernmental organisation sector. “I had only just started at WhizzKids when we realised the SMSs weren’t going through. I didn’t know this was something that had to be checked.”
And then there’s the human element.
“The one thing that saved us when the SMSs went down was that we were still going into communities to find the patients who weren’t coming to pick up their pills,” she says.
In 2018, this team of counsellors and community health workers found over 150 patients who had stopped coming for treatment, the organisation’s annual report shows. Social workers are an essential part of this team.
Mofokeng says: “They pick up issues in the household that a counsellor might miss.” At the academy, school is over for the day and young people have started trickling onto the grounds.
On the phone from New York, Wurst is confident WhizzKids has found a winning solution: “Someone dropped the ball. It happens, but once it was fixed … my, were the results powerful.”