Adherence to Protease Inhibitor
Combination Therapy among Youth:
A Report from a Focus Group on Issues for Youth Living with HIV 

A topic of great interest in today’s HIV/AIDS research arena is protease inhibitor therapies. A variety of new treatments and therapies have been developed by pharmaceutical companies in the hope of improving the health and longevity of people with HIV. Adolescents and young adults currently have one of the fasting growing rates of HIV infection in the United States. Thousands of young people are currently infected and many more are at-risk for HIV infection. New medications have pushed forward numerous clinical trial studies to investigate the effectiveness and usefulness of various protease inhibitor combination therapies. While studies have been conducted on HIV infection and the effects of medication, very little research has focused on the experiences of adolescents and youth. Some of these HIV-positive youth are currently taking protease inhibitor combination therapies in clinical trials or have taken them in the past. The factors motivating these young people to begin using protease inhibitors, their levels of adherence to drug protocols, and the effects of these medications may be different from those of adults. The importance of specifically looking at protease inhibitors and youth led The Measurement Group to conduct a focus group in June 1997 with 11 youth with previous or current experience with protease inhibitors. The purpose of the group was to provide a group of young people the opportunity to share their experiences and concerns about protease inhibitors. Health Initiatives for Youth (HIFY), a San Francisco community-based organization that works extensively with HIV-positive and at-risk adolescents and youth, assisted The Measurement Group in recruiting participants for this focus group.

Despite the high HIV-infection rate among young gay and bisexual men in San Francisco, the recruitment of young participants for the focus group was difficult. One reason for this may be the relatively low usage of protease inhibitors by this population. Among the youth who did agree to participate in the focus group, a number of them indicated that they began taking protease inhibitors and other drug combinations due to having high viral loads, low T-cell counts, HIV-related symptoms, or dramatic changes in their physical appearance. These comments by focus group participants suggest that newly-infected and newly-tested youth may not take medications until the onset of symptoms, or until they see changes in their laboratory test results.

The facilitator for the group discussion was a 29 year-old woman who was formerly the Executive Director of a San Francisco social service agency for youth with HIV, that is staffed by youth with HIV. The facilitator was known to more than half of the participants. The facilitator introduced the logistical requirements of the session prior to the group discussion. Participants were asked to sign a consent form stating that their participation was voluntary as well as informing them that their responses would in no way impact upon their ability to receive services from the HIFY program, which hosted the session. Most importantly, participants were assured that their identities would remain anonymous. To ensure accuracy of the information that would be collected from the focus group, the participants were asked for permission to tape record their discussion. The participants were assured that if at any time they did not want the recording of the discussion to continue, that it would be turned off. However, no such request was ever made by any of the participants. In addition, ground rules were established to help the flow of discussion. These rules included confidentiality, taking turns speaking, respecting different opinions, agreeing to disagree, and keeping to the timeline.

Seven questions were posed to the group to guide the discussion (see Appendix A for the questions discussed during the session). The questions included current protease inhibitor/medications being taken, background information from participants on why they started taking protease inhibitors and past HIV-related medications, protease inhibitor drug adherence, concerns regarding protease inhibitors, and positive and negative results of taking protease inhibitors.

• Length of time that young people knew they were infected. The longer that individuals had known their HIV status, the more likely they were to try protease inhibitors.

• Health status. Some participants said that they started the drugs because they were experiencing symptoms that affected their well-being and appearance. They mentioned changes such as thinning hair and changes in their bodies and skin. Another participant reported, upon seeing his T-cell count, "there was something about seeing my numbers (T-cell count) that really shocked and scared me. The average is around 10,000 and mine was 187. I asked my doctor what he had to help me."

• Physician recommendations to start taking medications. The experience of having their doctors strongly suggest that they begin taking medications, coupled with friends and family urging them to start, also had an effect on their decisions to begin. Around the time protease inhibitors were first coming out, one participant stated, "My doctor's philosophy was to ‘nip it in the bud’" at the beginning. A few of the young men said that their doctors "pushed" them into taking a drug. One participant said that his doctor was often "on him" to take protease inhibitors, but that it wasn’t until a year later that he finally decided to start taking them. After using the drugs for a while, he said "I realized that I wasn’t giving up (by taking the medication), but I was actually stepping up to life." Another participant whose doctor pushed him into taking medication reported that the medications sat in his backpack for six weeks before he actually took them.

• Having friends who were taking protease inhibitors. The group identified peer use of these therapies as an extremely strong influence on their decision to start taking the drugs. Friends, co-workers or counselors who already were on the combination therapies convinced many to start. Also, seeing friends and others getting better from protease inhibitors helped influence their decisions to start. Of the factors mentioned, firsthand observation of the experiences of a friend or close acquaintance was the strongest impetus to start using a combination therapy. Participants talked repeatedly about seeing the results with their own eyes and being told by friends taking the drugs that they should start. For one young man, hearing stories of protease inhibitors from friends "takes away the fear because you’re hearing that you’re not alone and that everyone shares your fear and…it reinforces that these (protease inhibitors) are helping." He also mentioned that "even though we don’t know what the long-term effects are going to be, we are all "kind of blindly leaping into this."

• Fear. Seeing other HIV-positive individuals pass away and fearing what might happen if they did not start treating their condition with drug therapy pressured some participants into starting protease inhibitor therapies. One participant stated that seeing his cousin die helped him to quickly make the decision to take medications. He saw what he had gone through and did not want that to happen to him. His cousin’s death "happened so quickly…he (his cousin) was in denial about it." After taking his initial blood tests, another participant saw that his viral load was 186,000, and he got scared and pressured himself into it. He had heard about "hitting it early and hitting it hard, and (he) thought that it would be the best thing to do." He got into a double-blind Viracept study and it has been the right thing for him because he has gotten his results and his viral load has been undetectable for 15 months and his T-cells have reached a high of 1,700 at one point in time.

• Media, television, newspapers, and magazine articles. Media images influenced participants to believe that people were getting good results from protease inhibitors. Some of these images on television and in newspapers prompted one young man to ask a doctor and other people about the medications. He mentioned that Project Inform in San Francisco was very helpful and that he went looking (for information) because of what he saw and heard. Another young man said that, "people were saying that HIV was a ‘chemically manageable disease,’ and I bought into it. For the first time in ten years, I felt like I wasn’t going to die." The ad campaign in San Francisco called "Stay Smart with HIV" "reinforced images of happy people" and for one young man, "helps keep the image of hope."

Not all participants in the group discussion felt as positively about taking medications. One young person who had tested positive in November 1995 described his test site counselor bringing up protease inhibitors as a "Band-Aid" for his positive test results. He reported that talking about taking medication right after he tested positive was not helpful for him. When he began taking medication a year after he found out his HIV status, it was because his doctor kept urging him to take the drugs. In addition, protease inhibitor combination therapies often do not produce the same effects in different individuals; a young man whose friends were taking protease inhibitors and showing improvements encouraged him to begin treatment; however, after six months on medication he showed no results. He described his friends as having doubled their T-cells and having lowered viral loads, but the medication had an opposite effect on him, and he gradually took himself off of it. Another young man mentioned that he ended up dropping out of a clinical trial because it was a constant reminder of his disease, and remarked that "he didn’t want to be a guinea pig."

Most focus group participants indicated that their doctors were supportive and were not strict regarding compliance to their prescribed regimen of protease inhibitors. "My doctor told me not to worry about it if I stopped for a week or so." Ten individuals (91.0 percent) stated that they followed their doctor’s directions either all of the time or most of the time when taking protease inhibitors. The physicians of the participants did, however, express concerns around illicit drug abuse. "My doctor was the one who told me about problems with coke and alcohol interactions (with medications)." Another participant stated, "I never brought up being high with my doctor. But my doctor would tell me what effects there were on my immune system from being high. My doctor was not judgmental." No one in the group said their doctor threatened to take them off medications if they did not comply with the regimen. Many participants were able to talk openly with their medical providers and stressed that creating a relationship prior to beginning protease inhibitor therapy was an important component in laying the groundwork for honest discussions about the patient’s ability to follow the drug protocols. However, one individual said that recommendations from doctors were not very consistent because he noted that "three different doctors have given me different advice and drug recommendations."

Participants articulated several concrete issues that acted as barriers or challenges to adherence for them. These reasons made if difficult for some to adhere to their treatment and caused others to decide not to stay with their prescribed regimens.

The young men had varying attitudes toward dating and sex and many voiced concerns regarding "unsafe" sex. The group discussed anonymous sex, dating, and long-term relationships. One youth commented that, "The medications have helped me to form a new relationship with a partner." Another young man said that he now tells his dates that he is HIV-positive because he has to be able to take his medications while being out with them. On the other hand, fear of rejection has made it difficult for another young man in the group to tell people about his status.

Issues regarding the prevalence and risks of unsafe sex were discussed by the group. Several members of the focus group expressed concern that they had heard about people having sex without using condoms and thinking that they could not infect others (because their HIV viral load was low). One participant explained it this way, "There are people having unsafe sex because the attitude about HIV is that it’s a curable disease." Re-infection was also an issue of concern. A young man said that he and his partner were questioning whether or not it was dangerous to have unsafe sex if one person was on a protease inhibitor and the other was not. They were concerned that they could be infected with a resistant strain and had questions because of the lack of concrete information on this issue.

• Future plans. Many of the young men seemed to have received a new lease on life when they began protease inhibitor therapy. One participant called the effect of protease inhibitors on his life, the "Lazarus Syndrome," saying that "(my) future has been given back to me." The young man also indicated that, although having a future is wonderful, it also carries its own challenges. "It’s no longer about dying; I have to pay off student loans, and I have to do something with my life. I feel like I have lost a lot of time." Another participant claimed that because of the medication, "My health is better, and I have more energy. I am now trying to help others." Many of these young men spent their teenage years preparing to die, and now that some of them feel that there is the possibility that they may live for 20 to 30 more years, they are faced with shifting their focus to the future.

Many young people living with HIV have spent their formative teenage years dealing with a terminal disease and are now starting from the beginning when it comes to developing an identity about living. One focus group participant said, "I have become more health conscious. Before, I was putting money into life insurance policies, but now I am considering adopting children. Now I am able to notice the flowers on the ground; before I would just stomp on them." Several participants reported either considering returning to school or have already returned to school. One young man stated, "I just finished the first year of law school (because my health has improved). I am 24 years of age. Taking meds has led me back to school."

The new positive attitude resulting from taking protease inhibitors was the predominant theme in the group. However, a few participants indicated that they have had a different experience. One young man talked about how actually taking the pills was emotionally difficult for him. Even though he also indicated that taking pills felt like a "commitment to life," he also said that using the medications made him feel stressed out and medicated. He explained, "I feel kind of worse, emotionally disturbed. I am constantly reminded that I have HIV." Another participant said that his need to get into a drug rehabilitation program was much more important to him right now, taking precedence over taking HIV medications.

The overall theme of how these young people felt after taking protease inhibitors can be summarized by comments such as: "My life has gotten better in the last six months. I had lots of issues to deal with because I thought I was dying in two years (at 23 years old) and I am now a whole new, different person." For some participants, however, this hopeful future is tempered with the feeling that they have lost a lot of time. This shift in perspective has caused many of these young men significant anxiety over their futures.

The group agreed that young people living with HIV need information on many levels. Participants thought that young people living with HIV should be given information by their medical providers regarding treatment options, including the option not to take medication and be able to "feel okay" about their decision. In addition, the participants felt that young people should take responsibility for doing their own research on the different medication options available, as well as discussing these options with their physician so that they can make informed choices, instead of "…just taking what your doctor gives you. Ask if this is going to work better than this drug. Find out if the benefits are the same or not." Knowledge about medication side effects should also be discussed, and the young men felt that HIV-positive youth should be informed about the side effects of medications and the possibility of choosing other drug regimens if side effects make the change necessary.

Group participants had several ideas concerning informing youth with HIV about protease inhibitors, as well as how to keep them on a prescribed drug regimen. Participants indicated that education on psychosocial issues should be stressed for physicians, particularly in areas such as treatment advocacy and sensitivity. Several of the comments given by group participants regarding their interactions with health providers have revealed that, at times, HIV treatment options are not discussed in a manner that is sensitive to the issues of HIV-positive youth. One participant also mentioned that, "Doctors don’t check up with their patients." The young men recommended that counseling was needed for clients on issues such as sex, HIV, and protease inhibitors. In the group there was also a strong sense that additional social support and counseling is necessary for young people who are taking protease inhibitor combination therapies. Several participants thought that having a peer who also was taking the drug helped — that person was someone who could call and check in with them; someone who would listen and be able to understand the issues that they are facing. Peer support was proposed as a way to help young people feel that they were not alone, especially in decisions and choices about taking medications.

A component of helping youth living with HIV is to inform them about their options. Several participants suggested that the media is a powerful force in informing young people about current drugs and what they can do. "We need media to show commercials with Madonna, and people like her to tell others that they can live with HIV and they don’t have to die from it." Finally, one young participant thought that compliance would be easier if there was "one combination therapy pill where you get your AZT, 3TC, Ritonavir (in one pill)…even if it is the size of a rice crispy cake." However, despite the positive effects of educating HIV-positive youth about their treatment options, accessibility to protease inhibitors is still a serious barrier for many young people living with HIV. They often do not have access to insurance or healthcare services and consequently do not receive the treatment that they need. Protease inhibitor medications are expensive, and many youth simply do not have the resources available to be able to take advantage of the treatments that are currently available. One youth said that "If the study was not around, I don’t know what I would have done. Being on these things is not cheap." Lack of access to protease inhibitor therapies is most likely keeping many young people who could benefit from the medication from receiving it.

Several conclusions may be drawn from the information gathered from this focus group of young HIV-positive men who currently or in the past have taken protease inhibitors in various combination therapies. While some of the issues being dealt with may be similar to those of anyone who is taking medication for a life-threatening disease, participant age, the stigma attached to being HIV-positive, and the lack of concrete knowledge about the long-term effects of single medication and combination therapies, has far reaching implications for young people today.

Making the decision to begin a drug regimen can be time consuming and difficult for young people living with HIV. Physicians and peers may have a great impact on the decision to start. Peers can be an especially good source of support during the decision-making process, and because it appears that young people are unlikely to start taking a protease inhibitor if they are asymptomatic, peers can help to inform young people about making healthy choices. Friends who are on protease inhibitors and doing better, as well as healthcare workers, can also strongly influence the decision-making process. Both physicians and peers can help youth with strategies that can make taking protease inhibitor medications a little easier, such as putting pills in smaller containers, providing tips on carrying them around, and ways of taking medications without necessarily having to disclose their HIV status. It is clear, particularly for HIV-positive youth, that a young person’s lifestyle must be taken into consideration in order for treatment to be successful.

The discussion from this focus group also highlighted a number of key concerns regarding compliance. Problems that made taking medication difficult for these young men included: disclosure to friends, family or even strangers; difficulty in juggling a social life with the time and food requirements; use of alcohol and illicit drugs; constantly being reminded of one’s HIV status; and medication side effects. Certain strategies were thought to be helpful in improving medication compliance, including creating a strong relationship between the health care provider and the young person before starting any treatment protocols. This relationship would ensure open communication for both the provider as well as the patient, and help to encourage honest discussions about taking medications in social situations and how these medications interact with recreational drug use. Social support from other young people who are HIV-positive and on similar drug regimens also was cited as a factor in increasing compliance. This type of support leads to the young people feeling that they are not alone.

It is important to note that the focus group participants have shown that it is possible for young people to take protease inhibitors and follow the regimen successfully. Most youth reported feeling better, becoming more health conscious, having more energy, and often exhibiting a feeling of renewed commitment to life as exemplified by one participant's thought, "I spent the first year letting go of dreams and goals. I am now starting to plan for the future again.