The Silent Struggle of HIV Treatment Adherence

Associate Editor

For Devarah "Dee" Borrego, HIV treatment is a hard pill to swallow. Borrego, a 31-year-old transgender woman living in Boston, has been positive for 10 years and has yet to take a single HIV medication. Though she has had several conversations with her doctors about the possibility of starting treatment, she has a history of mal-adherence and is afraid it will continue if she begins taking HIV meds.

Though Borrego has never been on HIV medications, she has been prescribed both antidepressants and hormones on a long-term basis. Borrego has always had trouble adhering to both of her pill regimens. "I always end up forgetting," Borrego explained. More than merely forgetting, Borrego hates the taste of her pills and feels overwhelmed by the prospect of having to take her medications every day.

"I usually end up thinking how much I don't want to do it. I get concerned that, if I take this now, am I going to feel OK in a few hours to do whatever else I need to do?" she said. With a child to raise and a job to perform, Borrego is fearful that short-term side effects will leave her down for the count when she needs to be most alert.

Though Borrego has trouble with adherence, it's not because she doesn't want to take medications. "It would be an amazing feeling to know that I could have my HIV in more control [by taking antiretrovirals]," she said. "I understand that it is important and something I will have to learn to do at some point, but it's something that is very hard for me at this point. ... I see it as a skill that many people I know have, and it's a very beneficial skill."

She's tried alarms, pill sorters and asking people to remind her to take her pills, all to no avail. "I can usually adhere for a couple of weeks to a month or a month and a half until I end up falling off, and then it takes a while to get back to starting again," she said.

"A Dirty Little Family Secret"

While Borrego insists that HIV treatment is very important to her, and that she will get on it at some point, she shared that many things take precedence in her life, including paying her rent, buying food, taking care of a 3-year-old with special needs and living in Boston with very limited finances.

Devarah "Dee" Borrego

Borrego believes that medication adherence is a larger problem in the HIV community than many may care to admit. "It's never been something the community is gung-ho to discuss," she said. "I don't want to say it's the dirty little family secret; but in some ways it's sort of like that to me. It's like nobody talks about the fact that people have trouble adhering, and that the consequences of not adhering can be really serious."

Adam Thompson is also trying to get to the bottom of this family secret.

Thompson was diagnosed with HIV in 2005 and is now a part of the professional HIV workforce. As the education coordinator at the New York/New Jersey AIDS Education and Training Center's office in Voorhees, NJ, he provides technical assistance to medical care centers supported by the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act and strives to improve adherence among people living with HIV. He is involved in a five-state collaborative initiative to learn more about what stands between people and successful adherence to their HIV medication.

Adam Thompson
Adam Thompson

According to Thompson, the most common barriers to HIV medication adherence are patients' undiagnosed or untreated mental health problems, issues with transportation to their clinic, lack of insurance or underinsurance, and tendency to report that they "feel fine" and don't need to take medication.

Thompson asserts that our daily pill-based medical model actually forces people with HIV to face a constant reminder of their HIV status. "We tell them to be adherent. But we don't take into account that taking a pill every day -- especially if a person experienced some kind of trauma through their diagnosis or in the process of being diagnosed -- that actually being adherent, could be a constant reminder of the trauma," he said.

Thompson himself is not immune from these challenges. He admitted that he forgets whether or not he has taken a dose when he drinks alcohol, which occurs rarely. He once tried to use a pillbox -- the same one offered to clients in the clinic where he works -- but said that this change in routine threw his adherence into chaos. "I couldn't remember that I was supposed to take it from the pillbox, and I would take it from the bottle, so I moved to my old way of just taking it every night at 9 [o'clock]," he said.

Related: Despite Chaotic Lifestyles, You Can Be an Adherence All-Star

Borrego notes that adherence problems are compounded for parents living with HIV. "There's a whole [load] of complications that this little kid adds into my life that I never would have imagined before I had kids." She added, "If I was on meds that had food restrictions or that I knew, if I took my pill, it's going to make me feel like crap for three hours -- coordinating to find a time when I can take that and be able to take care of someone else is really hard."

Data suggest how these struggles may play out on a nationwide stage. According to a U.S. Centers for Disease Control and Prevention analysis of the country's HIV care continuum, about 7% of people living with HIV in the U.S. in 2011 had been prescribed antiretroviral therapy but were not virologically suppressed. This means that, out of about 1.2 million diagnoses in the U.S. in 2011, roughly 84,000 people were diagnosed, engaged in care and prescribed a regimen, yet still had a detectable viral load.

Although the data show that 84,000 are stuck in the chasm between being prescribed antiretroviral therapy and achieving an undetectable viral load, adherence issues can affect people at any part of the treatment continuum. For example, as someone who has decided not to start treatment at all because of adherence concerns, Borrego and people like her are not counted among those 84,000.

Borrego admitted that her interview with was her first time speaking publicly about the medication-adherence challenges that have kept her from starting treatment. "It is a stigmatized topic within a stigmatized community, because we're living in a world where so many of us are fighting, working to make sure people have access to meds, [and] it can be counterintuitive to hear [of] someone who has access to meds not taking them," she said.

Long-Acting Drugs: A Better Shot at Adherence?

For Borrego, Thompson and other people living with HIV who struggle with barriers to adherence, a new form of HIV treatment in development may offer relief.

Long-acting antiretroviral medications (LA-ART) for people living with HIV are currently in clinical trials to evaluate safety and dosing. The two furthest along in study are an Investigational New Drug (IND) called cabotegravir and the non-nucleoside reverse transcriptase inhibitor (NNRTI) rilpivirine, which is currently sold commercially as Edurant, a pill taken orally. The drugs are being investigated not for use as daily pills, but as intramuscular injections that would be given once a month. The drugs would be available initially only for maintenance therapy, to be used to maintain an undetectable viral load achieved first through oral medication.

The idea of long-acting drugs may be somewhat new to HIV care, but they are already available for a variety of other conditions and needs. People living with schizophrenia who have trouble with adherence have access to long-acting treatments that don't require daily adherence. Women also have long-acting birth control options, which at least one study has shown helps them stay on birth control longer and makes them much more likely to refill their prescription.

When asked whether she would consider LA-ART for HIV, Borrego said, "Yes. Wholeheartedly."

When asked the same question, Thompson said, "Absolutely. Yes."

Will LA-ART Be Worth the Cost?

Though it is unknown how much LA-ART will cost, "I'm willing to bet quite a bit of money that it won't be cheap," says Tim Horn, HIV project director of the Treatment Action Group, a research and policy organization focused on improving access to effective HIV treatment.

Tim Horn
Tim Horn

Horn added, "The trends have been that whatever the new drug is, it's that much more expensive than its predecessor." Both cabotegravir and Edurant are patent-protected drugs, which means the cost of both as LA-ART could be very high, he said.

Horn also said the additional costs of delivering the drug in a new form -- via needles and vials, instead of pills -- would be factored into the price.

According to a recent article in Clinical Infectious Diseases (CID) that looked at the clinical role and cost-effectiveness of LA-ART, the treatment would only be cost-effective if it were priced extremely close to the current average annual cost of HIV treatment, which ranges from $25,000 to $40,000.

If the drug cost too much more, it would not provide enough benefit to justify the high price tag, especially for someone who was already healthy and virally suppressed. However, the CID researchers did find that LA-ART had good value at an annual cost of $48,000 -- both for people with poor adherence and those who had detectable virus after multiple treatment failures, because it would help them stay healthy in lieu of expensive medical care for HIV-disease progression.

Aside from the sheer cost of the drugs, there is another potential obstacle to widespread adoption of LA-ART for HIV: If it is prescribed monthly, it may not accord with the way HIV health care works.


Experts we spoke with were adamant that the U.S.'s HIV care system probably cannot handle monthly patient visits. If monthly LA-ART were widely adopted, it would challenge our current standard of care, which revolves around daily pills and quarterly or biannual visits to the doctor, they said.

In other words, we may be trying to shove a needle-shaped peg into a pill-shaped hole.

If a monthly administration platform requires monthly client visits, than between scheduling, billing and providing quality care, clinics may become overwhelmed. "I think, with our current system, if we had to bring people in once a month, that would be a nightmare," said Thompson.


Paul Sax, M.D.
Paul Sax, M.D.

Paul Sax, M.D., one of the co-authors of the CID article exploring LA-ART's cost-effectiveness, said that monthly patient visits wouldn't only overwhelm clinics, they could also lower morale among people living with HIV. Recently, U.S. HIV treatment guidelines were changed so that people whose HIV has been in check for a long time can come in less frequently for blood work. "To say that people have to come in every month to get their HIV treatment, I think would be a step backwards when so many of our patients are now stable," he said.

Horn agreed. "On the surface of things, many people think that long-acting injections sound like a great thing, that 'I don't have to take pills every single day.' And that's there. But that's also going to mean having to go back to the clinic once every month to receive the injections," he said.

Horn added that pharmacies -- where many people currently obtain their oral HIV meds -- may not be willing to administer LA-ART injections, which are intramuscular and require a higher level of care than the subcutaneous injections -- such as flu and meningitis vaccines -- that pharmacies often do deliver.

Thompson suggested that it might be more effective to bring the clinic to the people, using a medical unit that could travel to patients and directly deliver injections.

Borrego believes people should be empowered to deliver their own injections. She pointed out that she, and many transgender people like her, administer their own intramuscular hormone injections.

"I think those that are able, willing and capable of self-injecting should be taught how to do that and be given license to do that," she said.

A Sense of Normalcy

Despite the significant challenges LA-ART could bring to our HIV-care system, according to Thompson it is a natural next step for many people living with HIV, especially those who have the most difficulty adhering to their meds.

Thompson sees the potential of LA-ART to bring a sense of normalcy back into the lives of people with HIV. He said, "I think the ability to have an injectable that I would only have to do once a month or once every quarter would give us that space to grow, so we're not people living with HIV anymore -- we're just people."


As public health campaigns emphasize an "AIDS-free generation" or "ending HIV" and make access to treatment a cornerstone of those plans, they may end up overlooking the many challenges people face that can prevent them from successfully starting and remaining on HIV treatment. According to Borrego, while such high goals make humanity strive to achieve more, they often leave behind marginalized groups who experience unique struggles. "It discounts their experiences and it discounts their priorities as human beings," she said.

For many people living with HIV, there is a tension between public health needs, their own health needs, and their limitations and obligations. Personal obstacles may include those Borrego faces, such as child care and limited finances, or those Borrego has seen many others face, such as addiction and methadone treatment.

"Everyone's going to have unique and different needs around their HIV treatment," she said. "I firmly believe that as many people living with HIV should be on treatment as can be on treatment, and if people living with HIV want to be on treatment, it should be available to them. Support needs to be in place for people like myself who are considering treatment, but know it's not the right choice right now."

"You can't put the cart before the horse and say, 'If everyone in the world is universally on treatment, it will eliminate HIV,' because that doesn't account for people like me," she said.

"There needs to be some semblance of accountability and rationality that's based in the lived experiences of people living with HIV across a wide spectrum of the community, which doesn't always seem to be the case," Borrego added. "From my observation, people of color, women and transgender people are frequently ignored [in] these kinds of conversations on making these kinds of goals -- and that's problematic, because it leads to goals that are unachievable and unfeasible for those communities impacted greatest by HIV."

Pills offer people living with HIV the potential for a longer, healthier life -- a benefit that people who are not on medications cannot receive. However, Borrego's story highlights the need for public health officials and HIV care providers to see HIV-positive people as more than a repository for HIV medications. The burden of HIV is different for each person living with HIV. If HIV takes host in a body that does not do well taking daily medications, how can care be provided effectively for that person? How can care providers affirm that the lives of people who have problems taking their HIV meds are just as valuable as those who can adhere?

LA-ART has the potential to help many people with HIV who face adherence barriers to better health. But that does not mean that it will be a panacea for all adherence issues. There are people living with HIV who at every step need help to be their healthiest selves -- help that many do not receive currently.

As emphasized by Borrego: "Until we can address the needs of people like myself, on the outskirts and at the edges of the continuum of care, ... then we're never going to actually achieve the goals of that continuum."


Mathew Rodriguez is the community editor for and You can follow him on Twitter at @mathewrodriguez, like his Facebook page or visit him on his personal website.