New Perspectives on HIV: Hilary Hutton-Squire, Gilead

In October 2018, Gilead launched HIV Age Positively in the UK, which focuses on the “complex and varied” intersectional needs of people living with HIV. The initiative, which aims to foster innovative approaches to support the first generation of people living with HIV who are entering later life, as well as later generations, includes an annual grant program and conference to address four key areas where the greatest innovation is needed.

Following the first HIV Age Positively conference in London on December 5th, Hilary Hutton-Squire, Gilead’s UK & Ireland General Manager, talked to Pharm Exec about the thinking behind the initiative and how it fits into the company’s wider activities in innovative HIV research.

Pharm Exec: Can you outline how Gilead’s HIV Age Positively came about and what it hopes to achieve?

Hilary Hutton-Squire

Hilary Hutton-Squire: Gilead has been working in HIV for thirty years, and we've seen a huge amount of positive changes for patients in that time. We’ve moved from a situation where people diagnosed with HIV didn't know how long they were going to live to one where they can expect to live a long life. But as people living with HIV have started to age, we have seen new issues evolving. Aging brings challenges to us all, but for people living with HIV it can be a bit more complex. What we're trying to do is to say, “Okay, let's think about this problem in a really innovative and different way.”

So, we are bringing in people from outside the HIV space, people who are "Future Thinkers”, to create a pool for innovative ideas and solutions for the aging HIV community. We’ve launched a grant program to allocate funding to innovative projects in the community. The grant program is for organisations that seek to address challenges faced by people living with HIV, with reference to one or more of HIV Age Positively pillars. The pillars are Community Action, which is about empowering patients; Personal Health, which is about people taking control of their own health; Equality, which is about addressing stigma, and Health Services, which aims to address inefficiencies in current and new HIV care services. People are coming up with ideas against one or more of those pillars and we're providing support to turn those ideas into actions.

So, the focus is on a particular subset of the HIV population? Those people who have lived with the disease a long time?

The program is focused around the concept of aging positively with HIV, but that’s not just of concern to the older person living with HIV. Some of the people that we have found to be most interested and vocal about aging are part of the Children with HIV Association, for example. These are young advocates normally aged under 30, many of whom have been infected with HIV their entire lives. They are very interested in how HIV, the treatments for HIV, and the kind of healthcare they are getting, is affecting their body as they age, and over the course of their lives. People are not waiting until they're in their fifties to suddenly think, “How is HIV impacting me as I age?" People in their twenties are really interested to know that they're doing everything they can to set themselves up for the longest and healthiest life experience they can possibly have.

You mentioned bringing in people from outside the HIV space. What kind of insight and expertise are you drawing from outside the space?

For example, we're working with Julie Bretland, who is the founder of Our Mobile Health. She's particularly interested in how people are using healthcare technology. But she approaches it from a patient perspective, that is, how people actually experience technology, not just looking at technology for the sake of technology. Julie points to the fact that there are about 850,000 health apps available out there. But in this proliferation of potential technology, what is it that actually makes a meaningful difference to patients? That’s really important, because it's easy to have an idea, but it's another thing for that idea to make a real difference to people. Julie has her eyes and ears on the right way of using technology.

At our first HIV Age Positively conference last month, we had Dr. Brian Beach of the UK’s International Longevity Center talking about his insights into aging generations. He is not approaching the topic from a pure HIV perspective, but from the perspective of longevity; his really interesting perspective is that old age is no meaningful indicator of health. We also had Matthew Taylor, Chief Executive of the Royal Society for the Encouragement of Arts, Manufactures and Commerce, talking about what lessons his field can learn from the HIV community and vice versa, and how both seek to shape the future through ideas and action.

Those are three of the different perspectives that we have in the group; it’s a coalescence of the people who are thinking about HIV every day and people who are thinking about very different topics. When you bring those perspectives together, you get something really interesting.

What is on the horizon for Gilead in terms of this campaign and addressing HIV generally in the few years?

First of all, we were really pleased with the number of people submitting applications into the campaign’s grant program. We had 22 applications and awarded nine at the conference in December. That’s a healthy level of interest, and we hope that some of the applicants who were disappointed this year come back again next year with some new ideas. As we see some of these ideas turn into actions, we can start to see if they generate the impact they’re aiming for.

As I mentioned, Gilead has been leading innovations HIV field for nearly 30 years. We’re continuing to look at a range of different areas of unmet need from a scientific perspective. We are looking at how to make treatments that are better tolerated and more suitable for people over an extended period of a number of years. We're also looking at tackling multiple-assistance HIV, which is more of an issue in poorer countries where access to routine HIV services are not as good as they are here.

We've never done this journey solely from a scientific basis, however. It has also been very important for us to support those community organizations working with people who are living with HIV, and help to tackle the issues that they face. Those issues include stigma, which is still a huge problem for people living with HIV. We need to get rid of the stigma around HIV, so that people feel reassured about it and those that want to get tested can get tested.

But it’s also important that people don't get complacent and feel, because we can treat people with HIV and the virus, that suddenly HIV is “sorted”. Some people are talking about HIV becoming a long-term condition like diabetes. Okay, but if HIV is a long-term condition like diabetes, then we need to understand the long-term effects of the disease, and the long-term effects of treatment on patient's health, particularly as they age, just as we do with diabetes and, say, cardiovascular disease. We're happy to see that people, who perhaps at one point in their life didn't expect to be growing old with HIV, will be able to grow old with HIV. At the same time, we know that people's health changes as they become older. Most people who are aging are living with some kind of chronic disease or condition. And people with HIV are just like that. They might have diabetes, they might have cardiovascular disease, kidney problems, or they might have osteoporosis or issues with depression. All of those things may be impacted by the fact that they're also living with HIV, and that's the bit that we don't fully understand yet. So, we have to work really closely with the community in the coming years to understand that as much as possible.