EATG » A makeover for oral PrEP: designing real-world HIV prevention for women

A makeover for oral PrEP: designing real-world HIV prevention for women

When Manu (an alias of her choosing) got married, she never suspected her future husband had something to hide — something that would change her life and health forever. He came from a respectable family and had a good job. The only clue was perhaps the rushed wedding, which took place just 20 days after they met.

Manu told me her story as we sat in her cramped bedroom in Delhi. She was sipping tea as I filmed the conversation. I kept my promise not to film her face. Revealing her identity was a risk she couldn’t take. It could mean her — and her parents — losing everything, including her job, their home, and their place in their community.

A few months after the wedding, Manu discovered she was pregnant. She went to a doctor for routine blood tests. During what should have been a joyful time, the tests revealed her husband’s secret: He was HIV positive. And now Manu was, too.

As a designer in the health care and public health sectors — I was the first chief design officer for the Office of the U.S. Surgeon General under Dr. Vivek Murthy — I’ve encountered many different versions of Manu’s story. Through those narratives, I’ve come to see HIV/AIDS as an epidemic among women.

Around the world, more than half of individuals living with HIV are women. Young women are twice as likely as young men their age to contract HIV. Among 15- to 19-year-olds in sub-Saharan Africa, girls account for 3 of every 4 new infections. As a direct result, complications related to HIV are the leading cause of death among women ages 30 to 49.

HIV passes more easily from a man to a woman than the other way around. But the risk isn’t explained through biology alone. The spread of HIV reflects the vulnerabilities and inequalities of what it means to live as a woman today.

In South Africa, it is not uncommon to hear from women that their first sexual experiences were sexual assault. In India, the largest number of infected individuals are not truck drivers or sex workers, but housewives. How does a wife negotiate condom use with her husband without seeming to accuse her husband of infidelity?

Wherever women have less power, less access to education and health care, and live in poverty, they have greater chances of acquiring HIV.

Time and time again, women have told me they are waiting for a solution that would put them in control of protecting themselves against HIV. While there are microbicides on the horizon, like a vaginal ring and other delivery methods, the best and only prevention option right now is oral pre-exposure prophylaxis (PrEP), a formulation of the same medicines used for treating people who are HIV-positive.

Yet simply having a rational understanding that HIV is a threat, or even having access to PrEP, isn’t enough to create a habit to take the medication. In communities where HIV is common, pills and medications carry stigma — a visit to a clinic, even for prevention purposes, can make onlookers think someone is already infected with HIV.

Designers in health care seek solutions that thread into everyday life. For example, IDEO, the company I work for, helped the online pharmacy PillPack develop what started as a tech solution — a better way of packaging and delivering medication — into a human solution that gives patients and caregivers easier ways to integrate drug regimens into daily life. In a similar vein, we knew we needed to take a holistic approach to designing PrEP for women. If we hyperfocused only on the “compliance” of taking a pill every day, we would miss the mark.

With our collaborators at CONRAD, a research group focused on reproductive health, local partners in South Africa, and funding support from the U.S. Agency for International Development, we worked to develop an HIV-prevention approach that offers what women want and what works in their lives. We immersed ourselves in a collaborative design process with the diverse women we aimed to serve, and together created V, a new approach to oral PrEP for women, which launched this week.

V was designed as an experience ecosystem that supports a woman’s journey, from her initial awareness of HIV to getting tested for it, accessing PrEP, and staying on it. V is meant to feel more like a branded self-care product than a medical treatment. This de-stigmatizes PrEP as a way to lower for women the barrier to taking it. For instance, the carrying case for PrEP pills resembles a lip balm case, holds a week’s dose, and is made from soft silicone that silences the attention-grabbing rattle of pills.

During the design phase for V, we set up mobile storefronts to get feedback on our idea. Women (and some men) crowded around, so enthused by the concept that some even asked to buy the prototypes. In urban area and rural ones, the response signaled a hunger for something different. To support awareness of it, the V toolkit includes “Ambassador” parties, inspired by Tupperware parties, where women can speak in private and build group accountability around adherence.

Input from health care providers, the gatekeepers of oral PrEP, was key. We heard from doctors, nurses, and pharmacists working on the front lines of HIV treatment and prevention that the boldness and vibrancy of the V approach would help them better connect with the women they’re trying to reach.

Designers believe that changing behavior starts by designing for a new mindset. With HIV and other afflictions, like addiction, mindsets are defined by stigma. In my work with the U.S. surgeon general, opioids and addiction were a high priority. While we created practical tools for clinicians, like pocket guides for prescribing opioids, the change we had to create alongside those tools was a reframing of addiction, from a personal failing to a disease.

In the case of V, the design is more than the physical tools and resources around taking oral PrEP. The power lies in changing the way HIV prevention looks and feels for those at greatest risk of acquiring it. V transforms the traditional prevention message — “Don’t get HIV”— into a message of aspiration and self-determination: “Be empowered to care for yourself.” The vibrant, optimistic, visual design of the brand language is not just aesthetic; it changes the way women think about and relate to HIV and their own health.

Whether it is HIV, addiction, or mental health, the same lesson comes up: Disease does not create stigma — it’s what humans inflict on one another. But the shame and isolation of stigma can be as harmful as the disease itself. As a patient once said to me, “Handling my HIV is fine because I have medicines. It’s the stigma that’s hard to manage.”

In a world where women do not always have agency, my hope is that design-led solutions can transform prevention from a source of shame into an empowering ritual of self-care.

By Ann S. Kim

Ann S. Kim is director of health and well-being at IDEO Cambridge. She is also the director and cinematographer of Lovesick,” a new documentary about matchmaking for HIV-positive individuals.


 

Source:
STAT
News categories: Women, PrEP