Why some HIV-positive people may be reluctant to start therapy
Researchers in Australia conducted a study to understand the reasons why some HIV-positive people have either not started potent combination anti-HIV therapy (commonly called ART) or did initiate therapy but later interrupted it and have not resumed taking it.
It is very important to bear in mind that these interviews took place before the results of START became available. As the news about START diffuses over time, it is possible that more people may become accepting of the need to begin ART as early as possible. However, it is also possible that despite the results from START and other studies, a minority of newly diagnosed people may not wish, at least initially, to take ART. Therefore, it may be useful to consider the results of the Australian study below when treatment-reluctant patients are encountered. The Australian researchers also provide helpful approaches to engage with such patients.
Researchers recruited 27 participants (23 men, four women) by placing advertisements on the websites of community-based agencies. Interviews were conducted by telephone or in person between September 2012 and February 2014.
All participants were HIV positive. Ten people had never taken ART. Most of the remaining participants had taken ART for less than a year, such as during pregnancy or during post-exposure prophylaxis (PEP). Slightly more than half of the participants had a CD4+ count greater than 500 cells/mm3.
The researchers gathered the responses from participants and found several themes, which are reproduced here.
Why not take ART?
In some cases participants had not received what the researchers called “a strong recommendation” to initiate ART from their doctors.
Some participants reported that their doctors had encouraged them to consider taking ART. These participants reported that they were indeed considering it and continued to visit their doctor and had blood drawn for analysis. These participants and their doctors monitored CD4+ counts and HIV viral load and watched the trends in these measures over time.
A few participants disclosed that they had been diagnosed as “non-progressors”—rare cases where the immune system slowly degrades despite untreated HIV infection. These participants embraced the belief that somehow their immune systems would never degrade and that they would never have to use ART. Readers should note that some research suggests that so-called “non-progressors” do develop immunological injury arising from HIV infection. Thus, it is very likely that at some point in their future such people will have to initiate ART to avoid ill health and complications related to inflammation triggered by chronic HIV infection.
Doubts about medicine and science
According to the researchers, some participants expressed “a range of doubts and concerns [about] the science, politics and economics of HIV medicine.” The researchers added that “these participants were explicitly critical of biomedicine, and viewed HIV management practices as unduly influenced by the pharmaceutical industry.”
Despite disagreement and conflict with their doctors, participants who were critical of HIV treatment and related issues continued to visit their doctors for monitoring. These participants were all aware of their CD4+ cell counts and viral load.
Some of these participants also stated that they were interested in complementary and alternative approaches to ART. The researchers found that many participants who were distrustful of doctors and medicine viewed ART as “chemicals that were toxic.”
Concerns about well-being
Some participants felt that their immune systems were functioning adequately without help [from ART]. Furthermore, as they did not have any apparent symptoms of HIV-related complications, these participants felt that they could defer the use of ART.
Holding on to a way of life
Several participants expressed concern around the following issues:
- their ability to attend clinic appointments
- being able to visit pharmacies to fill prescriptions
- adherence—the ability to take HIV medicines every day exactly as directed
The researchers stated that some participants, due to fears of being “locked into a strict routine of medicine-taking,” also had issues about a possible loss of autonomy. One participant expressed his concerns as follows:
“I just feel a certain level of independence not having to take [ART]…I still am living and achieving and in control. And I feel as though I would become dependent on something to stay alive and battle the virus.”
Fears of change and disclosure
Some participants were concerned about how ART might change the way they viewed themselves or how others viewed them. As one participant said:
“I don’t want treatment to define who I am. And I don’t let the virus define me either.”
Participants were concerned that initiating ART would increase the risk of others discovering their HIV status. These fears were expressed in regard to filling a prescription, carrying it on their person and storing medicines at home or during travel.
Engagement with treatment also represented what researchers called “a major psychological and emotional hurdle in coming to accept…living with HIV.” According to the research team, participants who were concerned about this issue “expressed…avoiding any reminders of their HIV status at all.”
Views on ART
Researchers found that participants’ reasons for not taking ART could be grouped into the following themes:
ART initiation was inevitable and they would begin treatment once their doctors recommended doing so. Participants who were recently diagnosed or who had never taken ART were likely to express this view.
According to researchers, “the framing of ART use as ‘inevitable’ was common across most of our interviews and speaks to a culture and context in which pharmaceutical treatment plays a central role in shaping the story of HIV diagnosis and care.”
The research team stated that this view (of deferral) can be described as “a more explicitly recalcitrant version of treatment acceptance.” Furthermore, researchers stated that “those participants accepted there were probably good reasons to start ART but expressed a strong desire to avoid that outcome as long as possible.” Here’s how one participant expressed this idea:
“I was given a script [a prescription]…and it took me a good six weeks and push from my family to even get it filled. And those tablets are currently sitting under my bed in their boxes. And yeah, I’ve just been very hesitant to start taking them…I think that time will come, but for me it’s obviously taking a very long time! I think everybody knows it’s inevitable, know what I mean? It’s going to happen, right? [But] it’s like, ‘No! Not until I’m absolutely half-dead and have to.’”
According to researchers, “many who took up this position [of refusing to take ART] held deep fears regarding the potential side effects of ART…some had witnessed the highs and lows of HIV medicine since early in the epidemic, and therefore found it hard to place their trust in HIV medicines.”
Despite these feelings among some participants, researchers found that “almost all of these participants remained engaged with HIV clinical care, including some who had deliberately sought out new [doctors and/or nurses] willing to provide them with clinical services to monitor their HIV and manage symptomatic illness without the use of ART.”
Treatment as a low priority
Participants in this group gave a variety of reasons for avoiding initiation of ART such as these:
- child-care responsibilities
- experiencing significant emotional and mental distress
- criminal proceedings
An ideal future
By interviewing participants, researchers gained insight into the issues participants felt needed to be addressed before ART could begin. The research team divided these issues into the following themes:
In this category, people could foresee a time when they would become sufficiently ill and require treatment. Some people imagined a future with significant “physical deterioration.” As one participant stated, “I’d have to feel a lot worse.”
Treating for others
In this category, participants felt that other people (partner, spouse, family member) would strongly encourage them to take ART so as to greatly reduce the possibility of the sexual spread of HIV and/or so that their health would improve.
An impossible ideal
On hearing some participants’ wishes about the type of treatment they would prefer in the future, researchers described these views as “remarkably utopian.” Researchers stated that some participants’ demands about future treatment options were framed in way as to seem extremely unlikely to be realized. As one participant said about his willingness to take treatment in the future:
“If they came up with a tablet that, one tablet that [did] the job of all the others, and made me feel good? [But] that’s not likely to happen, so no.”
Researchers found that that one of their participants who had low CD4+ counts, “considerable ill health, and significant conflict with care providers regarding the decision to refuse treatment,” made the following statement about initiating ART:
“I would need to be ill and it would need to be definitely linked to HIV and you [would have to] show me why the specific medications recommended would benefit me.”
Taken together, many of the findings in the interviews revealed what the researchers called “an enduring set of fears” about ART among some HIV-positive people. By categorizing responses and issues about starting ART, these interviews provide a point of view that doctors, nurses and pharmacists can consider when counselling treatment-reluctant patients.
The way forward
According to the researchers, participants for the most part appreciated their relationships with doctors and nurses whom they saw on a regular basis. Many participants had chosen not to take ART with the support of their care providers. Thus, it is possible that as care providers’ views on when to start ART evolve, so will their patients’ views. However, these patients will likely only begin ART after much discussion.
Some participants sought what researchers called “convincing proof” that they should begin ART. Researchers also recognized that some participants sought an impossible ideal—guaranteed efficacy with zero side effects. This information can be used to guide conversations about the use of medicines.
Not necessarily irrational
The researchers cautioned that patients who do not wish to start ART should not simply be dismissed as irrational. Rather, many participants in this study had general fears about the safety of medicines. These fears were in part based on the early history of anti-HIV therapy. However, treatment has changed tremendously since potent treatment became available in 1996. In 2015, guidelines by the U.S. Department of Health and Human Services (DHHS) recommended that doctors prescribe combinations of drugs that are generally safer, better tolerated and more effective for the initial therapy of HIV. Many of these regimens are available in one pill that can be taken once daily. These guidelines could be used as a starting point for discussion with and education of patients.
Advice for care providers
In taking into account their findings, the research team made the following statement for doctors, nurses and pharmacists:
“…the best way forward, in supporting people being asked to make treatment decisions, is to continue to appreciate the breadth and diversity of beliefs that shape their thinking, and to provide specific forms of support and understanding regarding [what it means to take medicines and how it affects the bodies and lives of patients].”
Caring for oneself
The Australian researchers found that many of the participants thought carefully about their health; they were focused on “well-being, way of life and sense of self.”
A clue to psychological issues
The research team noted that while many participants “feared the use of HIV medicine…[they] did not report similar concerns about other forms of medical care and treatment including [therapy with antibiotics or antifungals].”
What is interesting is that the researchers stated that participants felt the following way:
“HIV medicines were invested with a particular potency, representing a greater risk to the self than other medical interventions, which needs to be better appreciated in policy and clinical activities relating to treatment uptake.”
Not more time
Researchers strongly cautioned that care providers should not assume that some reluctant patients “simply need more time before they are ready [to initiate ART].” Rather, researchers encouraged doctors, nurses and pharmacists to view their patients’ reluctance to initiate ART as something that may shift. Patients are engaged in a “process of deliberation which draws on their own particular past (treatment histories), present (contemporary concerns) and future (ideal conditions) perspectives on ART.” By recognizing these issues, care providers can begin helpful and ongoing dialogue about treatment.
The researchers also advised care providers to engage in “respectful interactions…so as to avoid excessive…adversarial debates.”
For the future
The research team specifically sought people who were reluctant to take HIV medicines, and so this may bias their findings. On the other hand, it is this specific group of people whose views on treatment need to be heard and understood, so we are lucky that the researchers were able to find this group. The Australian work provides valuable insight into the views of treatment-reluctant people and some of the psychological issues that underpin a desire to avoid or defer taking ART. Conducting analyses of interviews—qualitative research—is difficult and time consuming. The Australian researchers should be congratulated for engaging with their participants and gaining more insight into treatment reluctance. The findings from the Australian study can help a broad range of people working in the field of health and health education. It is very likely that in high-income countries in the future, there will be further emphasis on early initiation of ART. This emphasis will be both for the health of the individual and to reduce the further spread of HIV. It is in this regard that the Australian findings will be very valuable.
—Sean R. Hosein
- Newman CE, Mao L, Persson A, et al. ‘Not until I’m absolutely half-dead and have to:’ Accounting for non-use of antiretroviral therapy in semi-structured interviews with people living with HIV in Australia. AIDS Patient Care STDS. 2015 May;29(5):267-78.
- Sanchez JL, Hunt PW, Reilly CS, et al. Lymphoid fibrosis occurs in long-term nonprogressors and persists with antiretroviral therapy but may be reversible with curative interventions. Journal of Infectious Diseases. 2015 Apr 1;211(7):1068-75.
- Rodger AJ, Phillips A, Speakman A, et al. Attitudes of people in the UK with HIV who Are Antiretroviral (ART) Naïve to starting ART at high CD4 counts for potential health benefit or to prevent HIV transmission. PLoS One. 2014 May 28;9(5):e97340