CREATING A PATHWAY TO HOPE
HIV prevention drugs have helped reduce infection rates globally. Now Gilead Sciences has rolled out its digital platform, PrEP Hub® , in the US with a mission to help improve access to drugs and reduce stigma among the communities that most need it. We find out why it’s a gamechanger in the fight against HIV
Project Director Chloe King // Author Daniel Brigham // Videographer Ewan Donaldson
On June 5, 1981, the US Centers for Disease Control and Prevention published a report that described a rare lung infection in five young, healthy men in Los Angeles. The men also had unknown infections that were causing the immune system to malfunction. That article, published in the Morbidity and Mortality Weekly Report, would become the first official record of what was later named Acquired Immunodeficiency Syndrome – AIDS. Sadly, all five men would die of the virus and, by the end of 1981, there had been 331 reported cases in the US. In the 40 years since, AIDS – discovered in 1984 to be caused by HIV – remains one of the planet’s most serious public health issues. According to research by HIV.gov, around 1.5 million people acquired HIV in 2020, with 37.6 million living with the disease. There were 690,000 deaths – 690,000 devastated families. There is hope among those terrifying numbers, though. There has been a 30% drop in new HIV infections since 2010, and a decline of 61% in deaths since the global peak of the epidemic in 2004. Although there is still no cure for HIV, better understanding of the virus, improved treatment and an emphasis on prevention means that those numbers are declining.
It is a similar picture in the United States. HIV.gov estimates that 1.2 million people in the US have HIV, but new infections are going in the right direction. Again, progress is relatively slow, but it is real, hopeful progress nonetheless. A leader in HIV care has been Gilead Sciences. Founded in California in 1987, six years after that article appeared in the Morbidity and Mortality Weekly Report, and just a few months after the US Food and Drug Administration approved the first AIDS medication, Gilead has grown into one of the most important forces in the global resistance against HIV. It currently has 11 HIV medicines on the market, and is committed to halting its spread and, ultimately, finding a cure. Its focus is global, working both in countries that most need access to treatment, as well as using innovative techniques in communities within the US that are disproportionately impacted by HIV.
“Gilead has been at the forefront of advancing the care of people with HIV,” says Cristina Carlis, Vice President of Digital Innovation at Gilead. “When you think about the early days of the epidemic, patients were taking a handful of pills a couple times a day – as many as 50 pills per day – to live for two years and the quality of life for those years could be detrimental. “But look at where we are today. We have a single pill that really helps you manage your condition, and has really turned HIV from an acute infection into a chronic disease that is manageable and allows for a normal lifespan. So we've made tremendous progress over the last 40 years and Gilead has been right at the forefront of those advances.” A significant milestone in HIV prevention was when the first PrEP (pre-exposure prophylaxis) drug was approved in the US. It is designed for communities disproportionately affected by HIV, given to people who don’t have HIV in order to reduce their risk of acquiring it if they are exposed to the virus. While PrEP changed the landscape, the uptake could still be higher in communities that really need it. This is where PrEP Hub comes in.
We have a single pill that really helps you manage your condition, and has really turned HIV from an acute infection into a chronic disease that is manageable and allows for a normal lifespan. So we’ve made tremendous progress over the last 40 years and Gilead has been right at the forefront of those advances”
PrEP Hub was rolled out in the US by Gilead in June 2020. It is a digital platform that delivers tailored pathways for people who may be at risk of HIV, at different stages of their PrEP journey: from people who’ve not even heard of PrEP to those who use PrEP but need access to more information, and for those who may have been on PrEP but have since come off and are thinking about starting again. The idea is to make the process of receiving PrEP simpler and more accessible, and allow people to find out details in private. “PrEP Hub really came about out of the notion that there's still a lot of stigma when it comes to PrEP,” says Carlis. “So using technology to provide information about access to that care to raise awareness about PrEP, and really provide the tools for consumers to get information relevant to them in their PrEP journey, was really, really important to us.” Creating PrEP Hub started with asking the right questions: who are the consumers? Who could benefit from PrEP? How do you communicate to a community that someone should take a drug despite being healthy? What are their specific needs based on their place in the PrEP journey? From that, Gilead created a digital navigator, accessible on phones, that allowed users to understand why they might need PrEP, why they might be at risk or how they might benefit, and then provided options on how to find healthcare providers, testing sites, pharmacies, and home delivery options.
Jared Baeten, Vice President, HIV Clinical Development, joined Gilead a year ago after a career in academia working on HIV prevention globally. He was part of the scientific development of PrEP, working on early clinical trials that showed it was effective. But any medicine – including PrEP – is only effective if it reaches the right people, and that’s why Baeten believes PrEP Hub is an important step in the fight against HIV. “The challenge that PrEP Hub is trying to address is not all individuals who might benefit from PrEP have yet been able to take it up,” he says. “That could be because it’s not resonating in their lives, it’s not part of the conversations in their peers, their family, or their community. Maybe they don’t feel that it’s right for them. So PrEP Hub gives them that entrée about having to have a discussion, wherever they are across the spectrum, from ‘I’m ready to use today’ to ‘I haven’t really even thought about this much yet but tell me a little more’. So to be able to say ‘let’s give you some information and help you work through whether this is something individually for you’ is vital. “It’s person-centric: meeting people where they are, to try to get towards that community-level impact that we’re all looking for in HIV prevention. And doing that over and over again.”
A platform like PrEP Hub, with so much at stake, had one core principle when it came to product design: it had to be easy for the user to navigate. That might sound simple, but when you consider the complex journeys that can be taken, and the varied information that has to be delivered to the consumer base, it was a task that needed an innovative product team. Gilead partnered with Boston Consulting Group’s Digital Ventures (BCGDV) team. With a focus on healthcare, BCGDV specialise in innovative product design, engaging individuals more efficiently, and providing a differentiated customer experience. In what was traditionally a patient-physician environment, PrEP Hub is a reimagining of that relationship, shortening cycle times through digital engagement. One critical aspect was ensuring it was rich with data, and therefore rich with insight. BCGDV helped Gilead engage with the PrEP digital community and derive actionable insights from the online interactions, understand how it should be engaging with users, who it should be engaging with, and how to make the most of the insights it gained. As well as traditional management consulting, BCGDV comes with cross-functional digital and data capabilities. The combination means, together, Gilead and BCGDV can be agile with PrEP Hub.
“A well-designed product in the technology sense helps with prevention, in that it can make a medicine so much more accessible,” says Carlis. “You could have the correct medication, but if a consumer or patient doesn’t know how to get it, or access it, the outcome will be sub-optimal. So having these types of tools that are complementary to your medicines is really important in advancing the cure. “With Boston Consulting Group, we had a really good partnership and a great understanding from the beginning. We were both working together to ensure that we could galvanise a community, and get the insights out of this community, so that we could create the right solutions for the right consumers. And I think their knowledge, and their work in this space, was instrumental in accelerating some of the work for us. I'm very grateful for the partnership and the investment that they put into PrEP Hub.”
Our goal – our ultimate goal – is to not work on HIV anymore. Our intention is to work as hard as we can to do what we can to help end the epidemic. We at Gilead are one part of that, but it is a global endeavour and we all have to do our part”
As world-class as Gilead’s scientific knowledge is, and as excellent as BCGDV’s technical expertise is, in this instance it takes three to tango: engaging the communities most impacted by HIV meant it was crucial to work collaboratively with people with experience in serving those areas. As Baeten says, “It’s important to remember that PrEP exists because of collaboration from scientists, from clinicians, from community members in society and advocates from across the world.” Without buy-in from the communities, PrEP Hub would have been a non-starter. So Gilead has a network of local community groups it works with across the US, including My Brother’s Keeper (MBK). A non-profit, MBK’s mission is to reduce health disparities in the US by working with and enabling minority and under-resourced populations. A lot of its work is focussed on HIV prevention. MBK’s CEO, June Gipson, works closely with Gilead and participates in a number of their community advisory groups. She has worked in HIV prevention for 20 years, and is an advocate for the power of good that PrEP can have. MBK started offering PrEP in 2013 and, although the uptake was slow, it now has over 400 patients on PrEP across Mississippi.
“PrEP Hub is a great platform,” says Gipson. “It provides the information without having to search everywhere. So with PrEP Hub, individuals who are interested in PrEP can go in, put in their information and do the survey, and then they're provided with information – regardless of where they are in the country – about clinics, and community-based organisations, that can provide PrEP services. “Tools like this give a person the opportunity to pace themselves; to learn what they need to learn, to have a resource that actually gives them a guideline for what can happen. I think that that's very important.” Baeten sees working with communities as a way to help address disparities in PrEP use. “In many places where PrEP has had traction it hasn’t had full traction in every community in these areas,” he says. “To be able to provide tools, to be able to make those connections easier for individuals in disproportionately affected, disproportionately burdened by HIV communities, is particularly meaningful because in order to be able to talk about ending this epidemic in a real way we have to talk about really ending it for everybody.”
PrEP changed how community-based organisations had to work. It changed not only the community’s perception of how we prevent HIV, but it also changed how we decided how we could prevent HIV”
Gipson believes the COVID-19 pandemic has hastened the acceptance of PrEP Hub among communities she works with. The response to Coronavirus has shown that digital platforms can be an effective way of helping an individual’s healthcare, and also provides the comfort blanket of privacy. “When you think about PrEP and the sensitivity of it – you're talking about someone's sex life, you're talking about someone's medication – PrEP Hub gives them the opportunity to learn more on their own,” says Gipson. “Genetically, we're self-directed learners. And as self-directed learners, we want the opportunity to be able to go online, find what we need, and understand it from our perspective so that you can be more learned in the process. “PrEP changed how community-based organisations had to work. It changed not only the community's perception of how we prevent HIV, but it also changed how we decided how we could prevent HIV, and what type of entity we needed to become to be able to do this from multiple angles.”
The pandemic has shown that giving a patient the ability to monitor their own health isn’t the scary process that many assumed it would be. It empowers patients, keeps them informed, offers the protection of privacy while also providing access to face-to-face appointments with physicians or doctors. Similarly, PrEP Hub has shown that well thought-out online platforms that can engage communities are an increasingly effective tool. In the year since it was rolled out, PrEP Hub has already been a success, with thousands of users across the US. “I think when it was first introduced there was some hesitancy around it,” says Gipson. “Everything used to be so face to face, everything was so predicated on the person that you spoke with. But now this is the future, this is how they're going to communicate. It's easier on the patient, it's also easier on the staff.”
With Boston Consulting Group, we had a really good partnership and a great understanding from the beginning. We were both working together to ensure that we could galvanise a community, and get the insights out of this community”
Carlis sees the future of HIV medicine as hybrid: tools that can give a patient as much information as possible, alongside access to a physician. “I think we've learned so much over the pandemic, that it's not one or the other, but really the benefit is that sweet spot in the middle,” she says. “Having tools to help bridge the gap of being able to get to a physician is terrific, but there are times when you do need to have that physical interaction with the physician. “You can actually communicate with a healthcare provider via text; you can communicate in a way that you're not putting yourself out there if you don't want to. But, at the same time, you can get the help that you need in order to prevent HIV. I think that’s terrific.” While PrEP Hub is helping people in the US, Gilead remains committed to reducing HIV globally, with huge resources poured into some of the world’s worst-affected countries. It has helped bridge the technology divide in lower-income countries, while also remaining mindful that simply handing over a phone or tablet to someone in certain communities could signal that they are a participant in an HIV trial.
HIV remains one of the world’s most pressing health issues. A cure remains the holy grail – and Gilead, like many others, is dedicated to that pursuit – but prevention has started to turn the tide. Cases are falling, and there is hope for the future. “Our goal – our ultimate goal – is to not work on HIV anymore,” says Baeten. “Our intention is to work as hard as we can to do what we can to help end the epidemic. We at Gilead are one part of that, but it is a global endeavour and we all have to do our part. But we have the solutions on hand and the innovations that are coming, and the commitment and the energy and the vision. We as a world have that. I am optimistic. Every single day it drives me forward.” “We still have work to do, but we have come a long way since 1987, when Gilead was started,” says Carlis. “And I do see Gilead being a core contributor to help end the epidemic for everybody everywhere: with our medicines, with our access programmes, and with our concern for the communities where we work and live.”