Along the rural coastline of the Eastern Cape, a small community grieves the loss of a beloved makhulu, Nosethu Siyo*, at the age of 62. As the matriarch, she cared for 12 grandchildren.

But her death was not due to old age or natural causes. She died because she lived too far from the clinic to get her HIV medication.

At the end of each month, Siyo had to go to the clinic to refill her prescription. But the nearest one was a three-hour walk away, fraught with a river crossing and kilometres of steep hills.

She’d wake up early to start the trek, and after waiting for hours she’d finally collect her antiretrovirals (ARVs) that would prevent the HIV in her body from making copies of itself, and then begin the exhausting trip back home – all on foot, because there was no money for transport.

Because of the arduous journey, Siyo couldn’t get to the clinic every month as she was supposed to, which meant she’d miss taking her pills. Not keeping up with her treatment weakened her body and she often fell sick, a cruel cycle of illness and difficulty that made it even more challenging for her to travel to the clinic to get her medicine.

But it didn’t have to be this way.

Community-based pick-up points: A case study of Bulungula Incubator

Since 2014, people who use the state health system with chronic conditions such as HIV, diabetes or high blood pressure have been able to get their repeat prescription medication from a community pick-up point (PuP) instead of having to go to a government clinic.

These points don’t have to be a healthcare facility nor do they have to be staffed by a healthcare worker. For example, a non-profit organisation, church, youth centre, creche or even a traditional leader’s home can be a PuP.

Getting medicines delivered to their doors helps HIV patients in this rural community stay on their treatment. (Photo: Bulungula Incubator)

Bulungula Incubator, a nonprofit based in Siyo’s community, registered as a PuP in 2021 during the Covid-19 pandemic, when lockdown rules made getting ARVs even more difficult because gathering in busy spaces (such as queues at a clinic) was strictly controlled.

Bulungula uses its own health programme, which has a health point and a team of community health workers (CHWs), to get people their medication – and help them stay on it.

The health point is like a “mini clinic” and is staffed by three nurses who offer primary care to people in the community, including general health checks, maternal care and child immunisations. CHWs do home visits and, together with the staff at the health point, make sure everyone receives primary healthcare.

For an HIV patient to get their repeat medication from a PuP, they must have a check-up at a clinic first to see if the amount of virus in their body has dropped, which means they’re responding well to their medicine. The facility then sends an electronic prescription to the government’s central system that dispenses chronic medication, and it gets packed and couriered to the community’s PuP – in Bulungula Incubator’s case, the health point. The patient can then pick up their pills from there or have them delivered to their home by CHWs. If someone stops collecting or taking their treatment, the CHW can help them get back on track.

With people now being able to get their ARVs close to where they live and having CHWs who can help if they stumble, interrupted treatment is rare, and patients only need to travel to a formal clinic twice a year – instead of every month – for routine check-ups.

Read more in Daily Maverick: People living with HIV default on ARV treatments due to hunger, increasing transport costs to collect medicine

Says Bongezwa Maleyile, the health programme manager at Bulungula Incubator: “People don’t want to be sick; they want to adhere to their medication. The biggest reason they stop taking their ARVs here is because the clinic is just too far for them.”

Why PuPs work – and why it shouldn’t be difficult to set one up

When someone takes their ARVs every day, the amount of the virus in their body becomes so low that they can’t transmit it to someone else (this is called viral suppression). In this way, making it easy for people living with HIV to collect and take their treatment, PuPs can help to reduce the spread of the virus.

Opening more community-based PuPs can help people keep up with their ARV treatment, which is one of the lingering challenges to achieving the United Nations goal of ending the Aids epidemic by 2030.

Bongezwa Maleyile, Bulungula Incubator health programme manager, receives medication from the government’s chronic medicines distribution scheme. (Photo: Bulungula Incubator)

Lynne Wilkinson, a public health expert on Bulungula’s team who helped to get us registered as a collection point, explains that making it easier for people to get their medicine can help them stay on it.

“The biggest gap is not people never diagnosed or started on ARVs, but rather people dropping out, especially in the [early] months.”

Research shows that by March 2019, 37.5% of people on ARVs – almost four in 10 – were getting their medicine from community PuPs in districts where this service was available.

But for many small community sites, the process of becoming a PuP is drawn out and difficult, so many don’t open.

Because PuPs are seen as a service provider for the government, they are paid R10 per patient for delivering the medication. To get paid this fee, a site must first register on the central supplier database and have all its tax matters in order. Most often, the admin of the registration process is what discourages a collection point from opening, particularly those in poorer communities. But once the initial registration is done, running a PuP is fairly smooth.

We know PuPs help to get treatment to more people so they can live longer, healthier lives.

Now the big task is scaling them. Bulungula Incubator has learnt a few things along the way that can help to make the process easier:

Spread the word

The first step is to know that a central place in a community can become a PuP. At Bulungula, we registered as a pick-up point in 2021 during the Covid-19 pandemic and with the help of a health systems expert, even though we’ve had an established health programme for nearly 10 years. We hadn’t registered before simply because we didn’t know we could.

The idea of getting chronic medication from someone who’s not a medical professional may seem strange. But a government pharmacist is still dispensing the script; the PuP is simply the distributor. It’s like couriers in cities delivering scripted medication from private pharmacies.

Partner up

To run a PuP successfully and for a long time, it’s best to develop a relationship with a nearby clinic. This is important because the clinic will be the starting point to become a PuP.

There are also many partner organisations, such as the Anova Health Institute, the Aurum Institute and the Health Systems Trust, that can help communities set up and run PuPs.

Bulungula Incubator is partnered with TB HIV Care and Nkanya Clinic, our local government clinic. TB HIV Care helps us register and stay open, and we work closely with Nkanya Clinic to enrol patients and organise medication delivery to the PuP.

Know what people need

Setting up a community-based PuP is meant to make it easier for people to get their medication and improve their quality of life. Knowing what people in a community need is the best way to help them stay on their treatment.

When Bulungula Incubator first became a PuP, people still needed to come to the health point to collect their ARVs. However, we realised that even though it was closer than the clinic, it was still hard to get to for some.

‘People don’t want to be sick; they want to adhere to their medication,’ says Bongezwa Maleyile, health programme manager at Bulungula Incubator. (Photo: Bulungula Incubator)

The area is rural and sparse, with one long, winding road. Even walking just 5km to the health point can take more than an hour, because the terrain is so difficult.

Read more in Daily Maverick: Court to decide whether pharmacists can start HIV medicines without a doctor’s script

And if someone can’t walk easily or uses a wheelchair, it can take them much longer, if they manage at all.

This prompted us to have the CHWs deliver the medication during their home visits.

This added service has helped those enrolled on the government’s dispensing list to keep up with their treatment.

We realised that one size does not fit all. By adapting to the needs of the community, we make sure that no one gets left behind.

Despite having access to HIV testing and care, and medication being available at a nearby clinic, Siyo was missing the most critical component to improving her health: ongoing, easy access to treatment.

PuPs can help to change that, especially in the hardest-to-reach areas.

Says a 67-year-old resident of Xhora Mouth, who is unable to walk owing to a stroke and depends on a disability grant: “Now I don’t need to worry if I have enough money to go to the clinic anymore, because my medication is delivered straight to my house” DM

* Not her real name.

Sigrid Kite-Banks is the content manager at the Bulungula Incubator.

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.