Stop squandering opportunities to end AIDS: be responsive to the needs of HIV prevention users

Ten years ago this month, the Food and Drug Administration approved a daily pill that was up to 99% effective in preventing infection with HIV, the virus that causes AIDS. Expectations were high that this approach, known as oral pre-exposure prophylaxis (PrEP), could change the course of the AIDS pandemic.

It hasn’t.

The use of oral PrEP today is stubbornly low, while HIV rates remain tenaciously high. Just 2.4 million people worldwide have started oral PrEP out of tens of millions who could potentially benefit, while the 38 million who are living with HIV need ongoing treatment. Use of the prevention pill has increased recently, as more comprehensive and user-focused approaches to access it have begun to prove their value. But 2.4 million users worldwide does not represent the prevention revolution the HIV community had hoped for.

Meanwhile, rates of new infections remain alarmingly high, especially among women and girls, gay men, and trans people. More than 4,000 people still contract HIV every day.

Despite the existence of PrEP, far too many new HIV infections have occurred in the past decade because of the fundamental error underlying the drug’s painfully slow rollout: the public health world’s seemingly single-minded focus on developing products and technologies without similarly focused and funded efforts to make those products accessible, affordable, and responsive to users’ needs.

This myopic focus on product development is not limited to HIV. Consider the tepid global rollout of another lifesaving scientific achievement: Covid-19 vaccines. To paraphrase the old adage, you can build it, but if you can’t explain it, make it accessible and trusted, and create community support for it, they might not come.

Two recent advances in HIV prevention offer another chance to build better models for HIV, and for other diseases as well. Thanks to the participation of thousands of clinical trial volunteers, two new and highly effective HIV prevention products — a monthly vaginal ring and injections that can prevent HIV for two months — are about to enter the global market.

Like oral PrEP, these new forms of HIV prevention are safe and effective. And because they are longer acting, they offer potential advantages for people who do not want to take a daily prevention pill or who struggle with doing that. The vaginal ring, which uses the HIV prevention drug dapivirine, provides a monthly HIV prevention method that women can control. A single injection of the prevention drug cabotegravir can prevent HIV for two months.

If introduced and supported intelligently, these new products, along with oral PrEP and other effective prevention tools, could slow annual HIV infections to a trickle, saving thousands of lives and billions of global health dollars. To do that, however, the entire global health community — funders, planners, health systems, educators, advocates, and others — must apply at least five critical lessons.

First, products do not end pandemics. Scientific discovery must be supported with equally robust and concurrently conducted research about the needs, preferences, and concerns of those people the products are designed to help. Do they prefer a shot or a pill? What side effects are they willing to tolerate? Where do they want to access the product? And how important is privacy or control over their health care choices, especially around a stigmatized condition such as HIV? It’s also important to know what it will take for a health system to safely and efficiently include new innovation.

Second, education and outreach are essential to the uptake and effective use of a product. Most health marketing efforts, however, lack the budget, imagination, or insight to engage potential users. While many HIV prevention efforts use clinical terminology and focus on HIV risk, research shows that uplifting, aspirational conversations about healthy sexuality and relationships are much more likely to generate and sustain demand for and use of HIV prevention.

Third, many health systems need to make a 180-degree turn in how they approach their customers. No business succeeds by making it difficult to access their product. Bad service, inconvenient hours, and stigmatizing attitudes don’t build consumer interest in anything, including health products.

Fourth, equity and community engagement are essential at every stage of product development, introduction, and access. The days of the uninformed consumer are over. People know if the products they’re being offered have been developed with the support, engagement, and input of their communities. They are also keenly aware of whether essential health products are being distributed according to need, or are being stockpiled by wealthy countries. The tendency of wealthy nations to hoard and waste critical goods — Covid-19 vaccines are a good example — has been fatal to the credibility of many essential health products.

Fifth, it is time to fundamentally reframe HIV prevention products, services, and information to emphasize consumer choice. Science has given us pills, long-acting injections, and a vaginal ring for HIV prevention. Implants, vaccines, and other potential options are in development. A comprehensive approach to HIV prevention must embrace and support choice, based on the understanding that different prevention options will be right for different people at different times in their lives. This approach is essential to both increasing prevention uptake and ensuring that products are used for maximal impact.

HIV community leaders have outlined lessons learned from the slow and cumbersome rollout of oral PrEP, many of which are already having a positive impact. Since the December 2021 FDA approval of injectable cabotegravir, the product’s developer, ViiV Healthcare, has filed for approval in eight additional countries, including those in which the pivotal clinical trials for the drug took place. WHO guidelines on its use are expected this month — three years ahead of the timetable for the original oral PrEP. And conversations are finally underway about accessible pricing, implementation studies and initial introduction projects, health systems support, and generic production of injectable PrEP, all of which are essential to ensuring that people in low- and middle-income countries can access new forms of PrEP at the same time as those in wealthy countries.

But regulatory approval, normative guidelines, manufacturing, and conversations on pricing won’t prevent infections. Doing that requires building on the lessons of the past to ensure that every person who can benefit from these critical scientific advances has real access to them. That’s hard work, and much of it still lies ahead.

Linda-Gail Bekker is the executive director of the Desmond Tutu Health Foundation in Cape Town, South Africa. Mitchell Warren is the executive director of AVAC, a global HIV prevention organization in New York.