In Their Own Words: Adherence
What Are the Barriers to Treatment Adherence, and How Can People Overcome Them?
* -- San Francisco
Every client is different. It's best to assess each person's barriers to adherence, rather than making assumptions. For example, homelessness may be an issue for some clients and not others; some homeless people are very adherent. Some active drug users or clients who seem out of it have excellent adherence, while others who might seem together and are working part-time can't manage a drug regimen.
Depression is common. Sometimes clients are overwhelmed and not sure if they want to continue living, and the meds remind them of their illness or the mistakes they've made in their lives. At Action Point we refer depressed clients to mental health treatment. If a client needs psych meds, we can help manage those along with anti-HIV drugs.
To help improve adherence we try to tailor dosing schedules around the person's daily routine. We give some clients alarm watches to remind them when to take their next dose. We offer one-on-one support; it makes a difference when clients feel that someone cares about their health and the importance of sticking to their drug regimens. The same is true of clients' partners, some of whom are very involved in our clients' health. Basically, anyone in any situation can potentially stay adherent with guidance and support.
Everyone has their own story about why it's difficult to take medicines. Some people cite substance use and are afraid to mix antiretrovirals with alcohol and other drugs, or they get caught up with taking street drugs and don't take their anti-HIV meds. Other people have a hard time wrapping their heads around the idea that they have to take medicines very regularly for the long term. Some people lack a stable place to keep their meds and food for taking their meds.
Directly observed therapy [DOT, or watching a person take every dose of medicine] is very useful for some people here at Action Point. Others come in every week or two for Medisets. Others come in two or three times a week because they need extra encouragement; it's helpful for them to talk about their concerns and about what's going on in their lives. Having a good rapport with the provider can really help reduce adherence barriers for clients.
The biggest barrier for me is lack of a fixed schedule. Some days I might eat dinner at 7:00 pm, others at 9:00 pm, I go to bed at different times, wake up at different times, so there are no set markers during the day to remind me to take my meds. And the second biggest barrier is the pill burden. I don't have trouble swallowing them, it's the number of pills to take at once that is unpleasant. I've tried different things to create regularity. I was trying to take my pills every night before bed, but I had a lot of problems with that. Then I switched to mornings and it's been better. I tell myself, "Before I start my day, I take my pills."
In general, my adherence hasn't been good; I've had problems since the beginning. My doctor knows I have trouble with adherence, but he doesn't really know how much since my blood work doesn't reflect my troubles. My CD4 counts are always really good, around 700, and my viral load is about 20,000. It's not that he's punitive, but there's so little time to spend with him and so many other things I need to discuss. By the time he's done giving me the adherence lecture, there's no time for anything else.
In fact, I became more regular when I started taking only half doses of medication. But things have changed recently. My husband shared with me that he becomes upset and frightened when I treat my medications casually. So I really examined my motivations and saw that no matter how comfortable I was with my habits, I was still taking a chance with my life. Right now I'm back to the full doses and oddly enough, I'm having no problem staying on schedule. I guess it's the difference between seeing it as an inconvenient chore and seeing it as a lifeline.
I work primarily with gay and bisexual men. For a simplistic answer, the biggest barrier to adherence is life. We don't conceptualize how people will integrate at least 95% adherence into their lives. For some reason, it's expected that HIV-positive people will stay adherent all the time, for years, unlike people with other diseases. It's unrealistic to expect that type of outcome. In the gay community, one of the main barriers is mental health issues, such as depression, loneliness, and stigmatization. Another is illicit drug use, which is consistently shown to be a factor in adherence because it disinhibits people to do what they want. This is especially true of weekend drug users, who take illicit drugs to escape from everything, including their health and taking meds. Chronic illicit drug users find it easier to integrate and "routinize" their drug use behavior into the patterns needed to stay adherent to a HAART regimen. And again, a major barrier is the demands of day-to-day life -- work, school, relationships -- that impede people from taking meds properly.
Having a busy and active life is a barrier. I've been on a combo for six months, and only in the past month have I figured out a schedule. I'm fairly adherent. I missed a couple of doses in the first few months when I was taking abacavir [Ziagen], my only twice-daily drug. I forgot to take it a few times, so my doctor told me to take it only once a day, and I'm still getting good results -- not that anyone should do the same. Most of my meds have to be taken with a full meal or I have light-headedness and nausea. Since I don't always get to eat a full meal at lunch, over time I've been taking all my meds right after dinner so the side effects won't interfere with the day's activities. A real challenge was that the first regimen I was taking failed, but one of those first drugs, 3TC [lamivudine, Epivir], is also in my second combo. Coordinating with the pharmacy for the three drugs in the second regimen was a major hassle. My refill schedule wasn't synchronized, the pharmacy wasn't making it easy for me, and it became a significant barrier to manage whether I had the right amount of drugs, especially if I was going to take a trip. But now I have it worked out so that at the end of the month all three drugs are refilled at the same time. A Mediset definitely helps to remind myself if I've taken a dose. Before HIV I never took much medicine, except antibiotics, so it's been a real shift in my mental model to take drugs so regularly, but I've pretty much worked it out. I try to keep it simple -- a simplified regimen, a regular routine, always remembering to keep drugs with me if I'm going out.
The people I work with are primarily indigent, 90% Caribbean or African American, 60% women. Their adherence barriers are children (i.e., their needs and schedules), coexisting drug and alcohol use, perceived or real medication toxicities or side effects, and the need to take more than one dose of medication each day.
As for overcoming barriers, there's no question that once-a-day drugs with no food or water restrictions is the way to go.
I've been positive for almost 18 years and have gone through all the drugs that have come forward in development, typically one at a time. The challenge with pills is side effects, especially with certain drugs, like AZT [zidovudine, Retrovir], which makes me nauseous. Timing has been a real challenge. In order to take more than 30 pills per day -- which is what I'm doing now -- I've had to learn how to space them out without upsetting my stomach. At 9:00 I take the orange pills, at 10:00 I take the blue pills. Timing is also a challenge because I travel a lot for work. My current barrier is fitting T-20 [enfuvirtide, Fuzeon] into my schedule. This drug needs refrigeration, it needs to be mixed, and it has to be injected in a certain way in certain areas. I now have a desktop refrigerator at work to keep a week's supply at the office. If I'm traveling, I need a room with a minibar. If it's a social weekend, I need to bring blue ice packs with me. I have adapted. I'm very precise about maintaining the drugs and the regimen, and it's been really challenging. But I've managed to find ways around the problems with each drug. I'm in the 90% percentile in adherence and it's paid off. I think T-20 literally saved my life.
This article was provided by San Francisco AIDS Foundation. It is a part of the publication Bulletin of Experimental Treatments for AIDS. Visit San Francisco AIDS Foundation's Web site to find out more about their activities, publications and services.