A new survey uncovers barriers to treatment
by Chael Needle
There’s an old chestnut that goes something like this: People won’t make a change until they want to make a change. In our present context of low treatment rates, change—linking to and staying in care for those aware of their positive status—depends on an act of persuasion. Healthcare and service providers can share expertise and outline a range of options, but it is the individual who must ultimately persuade him or herself that sustained, long-term treatment is a viable course of action, if not at least worth a try.
A new survey, conducted by Harris Interactive on behalf of ViiV Healthcare, suggests that those who know their positive status but remain untreated are also often those who are unpersuaded. This is an urgent matter, as only one in three Americans living with HIV is taking medications, despite evidence of their efficacy and evidence that early initial treatment confers better long-term health outcomes.
The online survey was comprised of 911 participants living with HIV, both untreated (had never taken HIV meds) and treated (taking meds at the time or had begun taking meds within the last five years). The survey was conducted nationally (251, mostly male ages eighteen to forty-four) and in six local markets (729). In general, participants were ages eighteen and over. The survey aimed to illuminate some of the potential perceptual barriers to treatment. “Our goal with this survey is to contribute to the ongoing dialogue about the importance of HIV treatment, to help stakeholders understand these barriers better and, ultimately, to help improve treatment rates and retention to care,” noted Bill Collier, Head of North America, ViiV Healthcare, in a press release.
Researchers found a sizeable gap when it came to knowledge and attitudes toward the disease and its treatment. Overall, untreated individuals were less likely to be positive about living well with HIV than treated individuals. Eighty-four percent of the untreated versus ninety-one percent of the treated agreed that their disease is well-controlled. Seventy-two percent of untreated versus eighty-three percent of treated were less likely to agree that they will live a full life despite HIV infection.
The untreated were less knowledgable about basic facts of HIV’s effects than their treated counterparts. For example, sixty-three percent of treated participants knew that HIV is attacking the immune system even if the person with HIV does not feel sick compared to thirty-eight percent of untreated respondents. Eighty-four percent of treated individuals knew that the human body does not have a natural ability to fight HIV; sixty-one percent of untreated individuals thought that it did. Additionally, forty-one percent of treated versus twenty-five percent of untreated knew that being on HIV prescription medicine lowers the risk of transmitting HIV. Seventy percent of treated patients are worried about infecting others, compared to only fifty-three percent of untreated patients.
Some of the information collected related to perceptions about HIV meds themselves. Thirty percent of the untreated believe that the side effects of HIV meds are worse than HIV itself, compared to fifteen percent of the treated who thought similarly. Twenty percent of the untreated reported that they are not on a regimen because, once they start, they must continue to use the meds for life. As for treated individuals, eighty percent report that their meds make them feel better and that they can focus on the important things in their lives.
Some individuals with HIV who choose to go untreated may have perceptual barriers, but those barriers need not be seen as their own personal invention. The barriers may in fact be informed by other roadblocks, like the fact that treatment may not be easily accessible geographically or that treatment falls by the wayside amid competing life priorities. Some roadblocks relate to the ease with which a patient can navigate the healthcare system. Some roadblocks are cultural; some are financial. Treatment choices are only as substantial as the environment that helps to shape them. That is, the environment needs to change as well, as we strive to increase treatment rates.
ViiV Healthcare has taken this approach to heart by changing the treatment paradigm itself. For ViiV, getting to zero means zeroing in on HIV. Born of a partnership between GlaxoSmithKline and Pfizer (with Shionogi as a recent addition), ViiV has taken as its singular focus the treatment and care of people living with HIV. The singular focus allows, too, for an expansive one—it’s not just about treatment and care but understanding and addressing the environmental factors that impact its delivery.
ViiV Healthcare’s pooled expertise so far has produced Tivicay, Triumeq, and a vibrant R&D pipeline, as well as a fine-tuning of established antiretrovirals and their formulations. ViiV nurtures partnerships across commercial and academic organizations to not only improve existing meds and seek out novel therapies but also to find new uses for existing meds, particularly for PrEP and Treatment as Prevention (TasP), as well as to develop a cure, however long it takes. Its collaborate-to-innovate model also seeks to fill in knowledge gaps about how best to treat and prevent HIV infection in particular populations and communities around the world.
Strengthening linkages to care and bolstering retention is much-needed work. According to the CDC, the treatment cascade has on one end only eighty percent of those who are HIV-infected aware of their serostatus and on the other only a little over twenty-five percent of patients on treatment to the point where they are virally suppressed. Recently there has been a push not only for people to know their status but, if positive, to have them linked to care, retained in care, adherent to meds, and so on, so that the potential benefits of HIV meds are realized on a much broader scale. At HIV’s earliest stages, during acute infection, nothing may seem wrong, yet that is when HIV is most infectious and replicating furiously. Early treatment translates to better health outcomes and is showing success as a mode of prevention, as well.
But changing the environment to allow early treatment to be a real and unfettered choice cannot rely on one organization. It needs system-wide collaborations to address barriers to lifesaving meds—poverty, stigma and discrimination, a paucity of messaging, incarceration, and HIV criminalization among others.
Julie Scofield, Executive Director, National Alliance of State & Territorial AIDS Directors (NASTAD), an organization which is uniquely positioned to provide global and local views of HIV treatment and prevention gaps, tells A&U that the survey is a “wake-up call,” even as public-health professionals have “been aware of some of the difficulties related to the HIV care continuum.” NASTAD, which represents the nation’s chief state health agency staff who have programmatic responsibility for administering HIV/AIDS and viral hepatitis healthcare, prevention, education and support service programs funded by state and federal governments, has been keeping their own wake-up calls on repeat, like one of those alarm clocks that keep going off every five minutes.
“What this survey helps us understand is that we really need to be doing a better job around community education,” says Scofield, who shares that she was startled to see some of the untreated participants’ views and beliefs so prevalent. Notes Scofield, that’s where “I would have expected us to be ten or fifteen years ago, not in 2014,” especially when it comes to youth, who are saturated with information via social media and other outlets.
What that means is that our messages are not getting through to those who may know their status but are not taking (or even deeply considering) next steps toward potentially lifesaving treatment, she suggests. Reaching them will “ultimately help us turn the corner on the epidemic overall.”
Scofield understands the resistance on an individual level. “It is human nature not to want to take a medicine if you’re feeling okay.…How does somebody tell you, when you’re feeling perfectly fine, that you have to be on this expensive medicine?” she poses. I mention the reluctance of men, especially young men, to go to the doctor’s for anything let alone for a condition that does seem to be affecting one’s body. Scofield agrees: “Young men are notoriously bad about going to the doctor. We know that—across all types and races and ethnicities of men. They always say, Men don’t go to the doctor unless something hurts or is broken!”
For this and other reasons, treatment and prevention education need to be stepped up, she says. “It’s really interesting because we’ve gone through these periods of time where sometimes our industry partners were criticized for making treatment look too glamorous, right? Now that we have this solid science of Treatment as Prevention, I think we better get back out there and make it look accessible and easy and [assure people of the possibility that] you’ll feel good and the side effects will not be such a big deal. I think we’ve got to go back to those days where the guy is climbing the mountain on treatment!” she says, referring to a famously criticized pharma ad.
When asked about ways to approach treatment and prevention education, Scofield mentions that NASTAD has recently mapped out strategies in two reports. One, called “Raising the Bar,” highlights ways in which health department leaders are bringing innovation to the care continuum, state by state, through novel use of information technologies, surveillance data, community engagement, and Treatment as Prevention, among other approaches. The report also works to identify ways to dismantle barriers to care in the context of specific jurisdictions and communities. Another report is a “stigma toolkit” prepared by NASTAD in collaboration with the National Coalition of STD Directors (NCSD) called “Addressing Stigma: A Blueprint for HIV/STD Prevention and Care Outcomes for Black and Latino Gay Men.” The toolkit offers seventeen recommendations to reduce the public-health stigma that often prevents Black and Latino gay men and other men who have sex with men (MSM) from receiving gold-standard healthcare.
While the survey did not address ethnicity/race or sexual orientation, notes Scofield, applying the results to real-world contexts in the U.S. is something that health departments need to do consistently, in ways that are sensitive to individual, community, and cultural needs. That would mean, for example, reaching out to those hardest hit by new infections and those less likely to be linked to care, and, importantly, linked to care earlier. Right now that happens to be young Black and Latino gay men, whose healthcare decisions are often shaped by a legacy of skepticism of health authorities and socioeconomically oppressive forces, among other issues.
NASTAD calls for health departments and others doing HIV work to take a step back—to start at the “bar before the bar.” Scofield explains the new starting point: “The HIV care continuum starts with knowledge of your serostatus and we believe that for us to get treatment messages to [individuals], in particular, Black and Latino gay men, we really need to look at the environment in which these men are living, the stigma, the homophobia, the racism that are keeping them removed from [any] engagement with the healthcare system—not just with the treatment side of things,” says Scofield.
“We think it’s a two-pronged approach: looking at environmental factors—the bar before the bar—as well as looking at what specifically we’re doing [in terms of] outreach to people who know their HIV status but are not linked to or retained in care.
“From our perspective, we need more action on both fronts; it’s not an either/or situation.”
Scofield also suggests that we need to maintain a crucial investment in Ryan White CARE Act programs as they evolve under the implementation of the Affordable Care Act’s roll-outs, state to state. “Part of this story is also the fact that we know that individuals with HIV who are served by Ryan White programs are more likely to be retained in care, more likely to be adherent, and more likely to be virally suppressed,” she shares.
“From my perspective, that further strengthens what we believe is the critical need to continue the Ryan White program for the future. This is not a program we can afford to lose.…[W]e know it is doing a better job keeping people in care.”
Maintaining and making sure everyone eligible can access Ryan White programs are essential aims, says Scofield, but this approach needs to be paired with full implementation of the Affordable Care Act, as it is adopted and adapted across the U.S. in time for the new open enrollments coming up. Why is that? “If we do a better job of communicating to untreated patients the need to get into treatment early and to be retained and stay in care they’re going to need healthcare coverage and insurance coverage, and the Affordable Care Act will offer that for many of this population that we’re talking about,” says Scofield. “So I think it’s important to keep an eye on that while we’re redoubling our efforts around treatment education so that when people are convinced that they need to be in treatment they’ll have the insurance coverage that will enable that to happen.”
As NASTAD, ViiV Healthcare, and individuals might agree, persuasion needs partnerships.
Chael Needle wrote about newly revised treatment guidelines in the June issue of A&U.