When Patients Know Best

A few years ago, I met with a group of doctors and scientists in Tanzania to discuss the challenge of getting more people on HIV treatment. Huge progress has been made in the fight against HIV through increased access to lifesaving AIDS drugs for millions of people around the world. And yet, only half of the 37 million people living with HIV are receiving treatment.

As we talked about possible solutions to this problem, Tom Ellman of Doctors Without Borders stepped forward to share what his organization had learned about a new approach to delivering HIV treatment. He spoke briefly—just 5 minutes—but as soon as he had finished, I thought: Far more people should be doing this.

The innovation Tom described wasn’t a new technology. It was a way of simplifying HIV treatment to make it more efficient and responsive to the needs of the patients. (And as I note below, the groups highlighted in this video are just one example of the approach Tom told me about.)

Last week, I asked Tom to share his organization’s story in New York City at Goalkeepers, an event to celebrate global health and development successes and focus on what challenges remain, including in the fight against HIV.

Tom told the audience about Mozambique, where Doctors Without Borders has been working in support of the government on HIV since 2003. When HIV treatment was first rolled out, the government followed a traditional approach. Doctors working in centralized clinics controlled the care and treatment for HIV patients. In a country where one in 10 adults was living with HIV, clinic staff were so overburdened that they often could spend just a few minutes with each patient. Patients regularly traveled hours to reach clinics and waited in long lines to receive care.

While the program was successful in putting thousands of patients on treatment for the first time, it wasn’t serving the needs of the patients as well as it could. Not surprisingly, many patients—about 30 percent—dropped off treatment.

In 2007, small groups of HIV patients from villages around Tete, Mozambique, decided to challenge this approach. Instead of walking for hours every month to pick up their antiretroviral (ARV) medication, they would send one of their group to pick up drugs for all the other group members on a rotating basis. And that’s how a new model of care, known as the Community antiretroviral therapy (ART) Groups (CAGs), got started.

Reduced wait times and less frequent visits to the clinic made getting HIV treatment easier, and more patients stayed on treatment and stayed healthier. It also eased the burden on the country’s overloaded health care system, giving staff more time to focus on patients who needed the most help.

With clear evidence that these new models of care were making a difference, Doctors Without Borders worked with Mozambique’s Ministry of Health to expand these groups across the country. The Community ART Groups are just one example of what’s known as “differentiated models of care,” which are now being applied in many different ways and settings across Africa. In other countries, communities operate their own pharmacies to distribute HIV medication or have adapted approaches to meet the specific needs of the patients and their communities.

“The essence of these models is very simple. You listen to patients, you trust them, and adapt your services to their needs. You simplify things, you de-medicalize things,” Tom says. It’s pretty striking to hear a doctor talk about reducing the role of doctors in treatment—but the results speak for themselves.

This approach also became a real catalyst for our foundation. Although we don’t fund Doctors Without Borders, it inspired us to take a bigger role in spreading differentiated models to other countries.

What impresses me about Tom is that he is always looking to build on the progress that’s been made. “If the goal is to provide treatment to everyone who needs it, the world needs to go further. We need to adapt models of care for the hundreds of millions left behind in conflict zones, in fragile states, for migrants and refugees,” he said.

Next, Doctors Without Borders is eager to see how these new models of patient-centered care could be used to improve treatment for other diseases like tuberculosis or to expand access to vulnerable and marginalized groups including sex workers, migrants and those caught in conflict areas. These models could also be adapted to family planning or non-communicable diseases.

Tom’s vision is to develop health care systems based on trust and equal partnership between health professionals and communities. By empowering communities, he imagines a world where “leaving no one behind” is not just a slogan. Thanks to the work of Tom, his colleagues, and the patients they’re partnering with, it is on the way to becoming a reality. 

This originally appeared on gatesnotes.com.