This article by Gus Cairns first appeared in aidsmap.com here. Republished with permission.
A US study presented at last month’s HIV Research for Prevention conference found generally positive responses among people with HIV and clinic staff to a trial that used $70 gift tokens as an incentive for people to maintain an undetectable viral load.
However, the study found that only just under half of patients had an accurate understanding of what viral load was, and that this did not improve during the study.
This was a qualitative substudy of a larger US study, HPTN065, that explores ways to improve rates of HIV testing, linkage to care and treatment adherence in people living with HIV in deprived areas, as well as investigating other public-health interventions for people with HIV.
The participants also said that, far from spending the $70 on luxuries, many participants were spending it on basic necessities – including the co-payments on their own medications. This study therefore, while confirming that financial incentives can be used to improve retention in care and increase the proportion of people with HIV who are virologically suppressed, also underlines that poverty often lies at the root of failure to attend clinic and adhere to treatment, at least in the US.
The HPTN 065 trial is not only a study of financial incentives; this is just one part of an enhanced care package that aims to improve the rates of HIV testing, linkage to care and treatment adherence in people living with HIV in deprived areas, as well as investigating other public-health interventions for people with HIV.
The primary outcome of its viral load component is the proportion of people with an undetectable viral load in areas where the package is offered compared with similar ones where it is not. If results are positive, HPTN065 will serve as the basis for a nationwide trial of an enhanced HIV care package.
The trial of the viral load component took place at 39 HIV clinics in the Bronx, New York and in Washington DC between January 2011 and April 2013. Primary endpoint data (viral load) has not been released yet, but data from qualitative studies and of how the participants in the trial spent their gift tokens provided an interesting insight into this novel method of patient retention.
Seventy-five people aged 14 to 72 took part in semi-structured interviews and, in addition, there were individual interviews with twelve clinic staff involved in the trial and an additional twelve in three focus groups.
Of the 75 participants who were interviewed, 59% were from Washington DC, 63% were male, 3% were transgender, 59% defined themselves as black American and of the non-black participants 23% defined as Hispanic. Thirty-seven per cent defined as gay and 10% bisexual.
This was an economically and educationally deprived group. Three-quarters had an annual income below $20,000 a year (below £12,750) and a third had left high school without qualifications.
Participants received a $70 gift card every time they had an undetectable viral load test result. Altogether, during the two-year period of the study, 39,359 cards were given out, at a total cost of $2,755,130.
Participant and provider responses
Both the 75 patients interviewed and the 24 providers generally liked the scheme. Patients attended appointments more regularly, providers reported increased opportunities for better preventive care, and both reported improved staff-patient relationships.
One provider said:
It brought a lot of awareness to the patients. A lot of the patients that were not coming in for their visits were more frequent to come now, the two years that we did the study. They were able to get the idea of why they have to come at least more times out of the year to the clinic. Even if they’re suppressed they should still come to the clinic.
A patient said:
That was part of getting the card: that they take your blood; they check your weight; they check how you’re doing. And, to me, it was good that, you know, we got to know each other better.
The financial incentive did not increase participant’s knowledge about viral load in the wider study. In the qualitative substudy, half the interviewees had an incorrect understanding of what viral load was. Understanding viral load appears to be helpful as virological failure rates were only 5% in those with a correct understanding versus 10% with an incorrect one, though this may not reflect the entire population who received financial incentives in HPTN 065.
The main confusion was between viral load and CD4 count, and as a result, some patients thought that one’s viral load should be kept high and that ‘undetectable’ was bad:
I think there’s a range, and I’m not sure of the numbers. I think if your viral load is under ... I may be wrong ... if it’s under 500, you’re in trouble. And you want to keep it above that.
The researchers comment that despite these misunderstandings, three-quarters of participants understood that the reason to take ART regularly was to maintain a ‘good’ viral load, and that this may have been sufficient incentive for good adherence.
Clinic staff, however, were unaware of how inaccurate their patients’ understanding of viral load was, and thought they were all fully informed:
Everybody understood that if they don’t take their meds well they’re running significant risks of their viral load being high and not getting the card…I don’t know that anybody didn’t understand that.
The study created considerable logistical challenges for providers, especially in some clinics.
Participants in the study used their cards to meet real financial needs rather than luxuries – including paying for their own medicine. One participant, a 50-year-old black woman, said:
It helped me pay for my medicine. Then I got a few little personal things that females should have. Not to go in detail... It [also] helped me buy a little groceries, buy some eggs and stuff like that.
While a clinic staff member said:
About 80 percent of my patients live below the federal poverty line and [the gift cards] met a real need [for] them.
Inevitably, when poverty and money are together, tension was also sometimes created. In particular, some patients protested when they missed appointments or their viral load was detectable. Some started to regard the cards as an entitlement rather than a reward. One staff member said:
People acted like this is their pay check – like they worked for hours to get a gift card here. Like, ‘I deserve it! I took my medication.’ And sometimes I had to step back and say this is for your health; you know that, right?
On the whole, though, the card scheme improved staff-patient relationships. Furthermore, being offered a tangible reward also improved participants’ self-esteem: people who were often jobless and without the experience of being able to do anything to improve their lot in life associated clinic attendance with self-improvement in other areas. One woman said:
Yeah, it made me feel important with myself instead of being depressed with HIV. I bought a present for myself.... You’re like, ‘I got something, someone offered me something and I can do something for myself.
Staff also said it greatly improved the atmosphere at their clinic and the work environment in general. One clinic director said:
There was a tremendous emotional positivity in the clinic. I think it’s improved the dynamic of my staff in the clinic. I think we felt empowered to do something beyond of what we do already.
While a nurse commented that the scheme helped her “get to know certain patients on a different level.”
Tracking patient mobility
One interesting aspect of the study was that it enabled researchers to track anonymously where the cards were used. While 95% of Bronx cards were redeemed in New York state and 94% of Washington cards in DC, Virginia or Maryland, the approximately 5% remaining showed up in every single US state, in Puerto Rico, the Virgin Islands and a few countries outside the US.
Patient mobility and migration of poor people from one work or shelter opportunity to another may lie behind some of the low rates of retention in care seen in the US which – with only an estimated 30% of all people with HIV virally suppressed, compared with 60% in the UK – has one of the poorest retention rates of any higher-income country. So financial incentives could serve as a means to stay in contact with patients as well as encourage them to attend clinics.
Pack A et al. Unanticipated Impact of Financial Incentives on HIV Patients and Providers: Findings from a Qualitative Sub-study (HPTN 065). HIV Research for Prevention conference, Cape Town. Poster presentation P06.02. 2014.
Greene E et al. Understanding of Viral Load among Participants Receiving Financial Incentives for Viral Suppression: Findings from a Qualitative Sub-study of HPTN 065. HIV Research for Prevention conference, Cape Town. Poster presentation P06.04. 2014.
Gamble T et al. Geographic utilization of gift cards used for financial incentives to encourage viral suppression: findings from HPTN 065. HIV Research for Prevention conference, Cape Town. Poster presentation P52.04. 2014.