By Paul Bhuhi and Annika Lindorsson Krugel
Governments need to commit to solving lack of capacity, overdependence on donor funding, poor coordination, and deteriorating infrastructure
To end HIV in our lifetime, collaboration will be the driving force. We regained a sense of the power of collaboration again this year, when after nearly two years of being grounded thanks to COVID-19 and confined to online meetings and email exchanges, we could hold in-person, dynamic roundtable events with multifaceted stakeholders again to discuss the core challenges in HIV treatment management.
There really is no substitute for true interpersonal synergy – we got together to share learnings and co-created solutions. We left with a renewed optimism and passion for the job at hand: together we can achieve the UNAIDS 95-95-95 HIV treatment and care targets, and together we can minimize the burden of disease!
Recent roundtable sessions in both Abuja, Nigeria and Kampala, Uganda, focused on the common and pressing challenge in HIV treatment and care programs, of how we retain patients on their HIV treatment. In public health speak we ask: how do we achieve the ‘second 95’ on the HIV epidemic control continuum? This is an essential tenet of HIV management, because for people to live healthy lives and stop the transmission they must be virally suppressed and that means they need to stay on long term treatment.
While great strides have been made in both countries, there is always more to learn and more to do. That is where the power of in-person collaboration brought together four groups of stakeholders – namely government, donors, implementers and medical experts – whose collaboration is integral to differentiated service delivery and continuous quality improvement so that people living with HIV can continue to have positive health outcomes and live healthy lives. Together we discussed our shared challenges, dreamed into a better future and co-created solutions.
Here are a few key insights and reflections:
Too many people are dropping off HIV treatment
Latest data from Uganda National HIV programs, for example, shows patients dropping off treatment or ‘loss to follow up’ at clinics, where 21% of people drop off treatment in the first six months, and up to 30% of people drop off treatment within the first two years.* Similarly trends in Nigeria have shown significant improvement in retention but more needs to be done.
The reason for individuals dropping of treatment is multifaceted
Stakeholder have interconnected challenges to improve patient outcomes:
Governments need to commit to solving lack of capacity, overdependence on donor funding, poor coordination, and deteriorating infrastructure. Donors need commitment from governments, delivery on infrastructure and good quality data from their health systems. Implementers on the ground can face several barriers ranging from workforce attrition, industrial strikes, resource constraints, technology support and access to connectivity. All these ultimately lead to a worse outcome for patients often facing high costs of transport, long waiting periods and hidden costs which means these patients are more likely to fall off their HIV treatment.
Patient stigma is still a problem
Central to the patient is often stigma which continues to be a massive obstacle to seeking treatment throughout their lives. Patient rights and privacy need to become the center of shifting the conversation.
So, what can be done to increase patient retention? The challenges are multifaceted and patient outcomes must be at the heart of what we do. This group of stakeholders together across borders, programs and roles brought us to some very focused actions and themes that, scaled-up, could lead to improved retention and better outcomes for the patient. One of the major themes we see across programs is sustainability. It was uplifting to see that across the countries we visited there was resounding support for strong coordination between government, funders, implementing partners, civil society, and other relevant actors for effectively working towards achieving patient retention and to strengthen the broader health systems and epidemic control.
While there may not be a silver bullet, the following are key success factors and trends that enable retention:
We must use technology to inspire action
Technology is another hot topic especially in retention and reaching the final 95 target of viral suppression. As we have found in our current work across Africa, using Artificial Intelligence (AI) and predictive analytics, it has become possible to identify high-risk patients who are more likely to fall off treatment due to missing appointments or not collecting medication. As one of the delegates said, “we simply don’t have the resources to call or personally reach out to everyone”. By having this data, AI can guide programs on where to focus their resources and develop outreach and communication strategies to reach these patients and ensure they remain on treatment. We support a large HIV program in Southern Africa, and it has shown that reaching out to these patients via SMS, telephone call or home visits has significantly improved appointment attendance. It all comes down to how technology can help to guide where that action should be focused.
Retention is a dynamic, moving thing
This is where AI becomes even more important as actions and strategies can be molded around data driven analytics. Technology can also be the backbone to ensuring patient data remains private and protected. With the right security protocols in place, patients will be less exposed and therefore able to maintain their right to fair access and privacy. As one of our attendees who has used technology extensively said, “The project has demonstrated the effectiveness of proactive tracking of people living with HIV and has made us understand the importance of the tracking interventions we are implementing. It has broadened our minds and we already have plans to scale up to more facilities.”
The other major theme is around differentiated care and service delivery.
We need to meet the patients where they are and understand their challenges better. Improved facility care, welcoming the patients without discrimination and stigma, creating shorter waiting periods, and ensuring there are no hidden costs that cause them to go off treatment, are all problems we can solve if we work together.
And as we gather more and more people together from across health programs that we work in, we always walk away with a sense of togetherness. Our vision is a world where access to good health enables people to flourish. From interactions on the ground, we can tell you that although it may seem challenging and difficult, it is a shared vision across borders and there is most certainly a drive to keep reaching for that vision.