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We Need to Celebrate the Unpaid Health Care Heroes in the Fight Against HIV

Author: Stephanie Chamberlin, MIA, MPH, PhD Candidate 

In February, at a large international conference in Denver, scientists stunned the world when they announced that they had cured a third person of HIV, catalyzing a new wave of optimism for ending the HIV epidemic. Since the advent of antiretroviral therapies in the late 1980s, scientific advances in HIV treatment and prevention have received resounding applause, improving the lives of those infected with HIV and changing the course of the HIV epidemic. Scientists and healthcare workers create and distribute these critical tools in the fight against HIV. For that reason, they are often cast as the heroes of our epidemic stories, and rightfully so. Nevertheless, when we tell the narrative of HIV, we may be missing the central protagonist, the unpaid and dedicated healthcare heroes who have changed the course of the epidemic – the people living with HIV who routinely seek out and take their HIV treatment.  

We don’t need to wait for news of the latest scientific discoveries in the fight against HIV to feel optimistic. We can and should celebrate what has already taken place. In sub-Saharan Africa, where over 25 million people are living with HIV, expanded HIV treatment access has meant cutting HIV-related deaths and new infections by almost half over the past decade.  

Too often, people living with HIV in sub-Saharan Africa are cast as passive recipients of HIV treatments, as victims of a disease who require someone else to provide lifesaving help. In reality, people taking HIV treatments work diligently to get to the clinic, to take their medication on time, and to do so amidst numerous challenges. Without the efforts of people living with HIV, HIV treatment would remain an unfulfilled promise. 

While HIV treatment has become simpler, taking a pill every day requires lifelong dedication and effort. Most people struggle to take medications regularly, which is why so many medications come with advice about how and when to take a pill if you miss a dose, and why statistics for birth control pill effectiveness include numbers for “perfect use” vs. “average use”. Missing HIV treatment pills can have severe health consequences, especially if that happens frequently. When my colleagues from UCLA and I spoke with people living with HIV in Malawi, they were very aware of the importance of daily HIV treatment and made concerted efforts to take their pills every day. 

In sub-Saharan Africa, the challenges of daily HIV medication go beyond remembering to take a pill. The barriers to getting HIV treatment refilled include fear of HIV-related stigma and being seen with medications, monthly or quarterly trips to the HIV treatment clinic that is often only open one or two days each week, long clinic wait-times—often for multiple hours, lengthy walks to and from the clinic, expensive transportation fares to clinics, and unwelcoming clinic staff. Our research shows that these obstacles are compounded by competing life demands, such as caring for a home and family, daily work schedules, unexpected family obligations such as illnesses and funerals, and traveling for work.  

Despite these challenges, over 90% of people taking HIV medication in sub-Saharan Africa are doing so effectively. Indeed, researchers who talk to people living with HIV have repeatedly documented a strong appreciation for and commitment to continuing their HIV treatment. When we asked people in Malawi what they do to manage their HIV treatment, they described their detailed systems and tools to navigate obstacles, as if it were a job. Many people we spoke with have strategies to remember their medication, often enlisting friends and family members to help remind them. Some manage medication side effects by finding the right time of day to take their pills—like with a meal, or right before bed. Others have systems of making check marks on a wall or calendar or counting pills routinely to ensure they get to the clinic before running out. Social support is also key, as many ask friends or family to watch children or fill in for them at work when they need to go to the clinic for a refill, and many proactively borrow money, cars, or bikes for transit to the clinic. 

Further, we found that people go to great lengths to remain on HIV treatment even when they can’t get to the clinic. Some receive extra pills from their health care providers when they know they have to miss a clinic visit. Others seek out friends and family members to go to the clinic on their behalf, and some seek medication at another health clinic when they are travelling. These strategies involve planning and concerted effort to make sure HIV treatment continues amidst everything else that goes on in life—this is work, and it is important work.  

In fact, in a related study, my colleagues and I from UCLA and University of Colorado Denver estimated that the unpaid labor of simply getting to the clinic for HIV treatment refills required 20 to 40 hours over the course or a year. That amounts to a full week of vacation or sick leave, half of what is available in many fulltime jobs in the US. And that number does not include the hours of planning and effort to manage treatment outside of the clinic.   

These efforts towards successful HIV treatment have big payoffs. Effective treatment means the level of HIV in a person’s body is so low that it doesn’t lead to AIDS-related illness. It also means they won’t transmit HIV to their sexual partners, and that has huge implications for slowing down the HIV epidemic. 

Let’s celebrate these critical unpaid health care heroes and their success in curbing the HIV epidemic. We should value people living with HIV in sub-Saharan Africa as key partners in the fight against HIV. In doing so, we can honor their efforts by continuing to invest in improved health care infrastructure and new treatment options that makes their health care work easier and gives them more time to invest in other efforts.  

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