Table 2 Barriers preventing consistent access to PrEP and harm reduction services and recommendations to optimize delivery among PWID in Kampala, Uganda

Drug use influenced PWID behaviors

Stealing money was a strategy used to support drug access

“Because of the constant need to use heroin, you end up stealing to get money to buy the drug because each time you use heroin, you need more so that you do not get turkeys.” – [Male, age 37]

Drug use facilitated increased drug use to address developed tolerance

“The more you use the drug, you find that your brain gets used to it, and the drug no longer makes you high, and yet you need to get more “heights” (more effects of the drug) than what you are getting. That is what in most cases causes us to change from the drug that you were taking to use another drug.” – [Male, age 27]

Withdrawal symptoms made it challenging to keep consistent employment

“There is a woman who gave me a job but stole from her because when the turkeys come in, you cannot think straight. You would rather steal than have turkeys. They are so painful and unbearable.” – [Female, age 20]

HIV prevention was not prioritized when PWID were experiencing withdrawal symptoms

“[W]e would divide ourselves into groups and then share [injection equipment]. I know I was at high risk of contracting HIV because most of my friends were prostitutes and yet some were HIV positive. But during that time when you need to treat the turkeys, you cannot think of that.” – [Female, age 23]

Poor utilization of HIV testing services despite high HIV risk awareness

HIV negative test results encouraged PWID to engage in less risky behaviors

“One day I went to [the hospital] and tested for HIV, and my results were negative. Remember, I was injecting myself and sharing the syringes with my friends so when my HIV results came back negative, the thought of only using my foil crossed my mind, and realized that it was even safer.” – [Male, age 31]

Beliefs about already being HIV positive delayed or prevented HIV testing

“When the health worker drew blood from me [for an HIV test], while waiting for the results, I was in fear and was positive that my results would be positive….There are junkies among us whom we knew were HIV positive but we still shared syringes with them. They would use syringes and then you also use them. I was happy when the health worker told me that I am HIV negative.” – [Male, age 30]

Low PrEP literacy hindered PrEP uptake and adherence

Confusion about how PrEP worked influenced strategies for use

“I think [taking PrEP everyday] is not possible because you will not have sex with the HIV infected person every day. What is better is to take that medicine when you expect that you are going to have sex with such a person. That is because they told us that medicine remains in the body for five days; that if you swallow a PrEP tablet today, it remains in the body for five days. So, for all those days if you have sex with someone who is infected with HIV, you do not contract it.” – [Male, age 47]

Limited access to food was described as a barrier to consistent PrEP use

“I would only take it once in a while and yet you have to have eaten something before taking PrEP, and even after taking PrEP, you had to eat a lot. I did not have money to buy what to eat and it is hard to eat when you are using drugs…..That became a barrier for me to adhere to PrEP.” – [Female, age 23]

PrEP was used in relation to perceived risk

“I do not take PrEP every day because I do not have sex every day. I only take PrEP when I am going to have sex. Why then should I be taking PrEP if I am not having sex?” – [Male, age 28]

MOUD uptake was motivated by a desire to restore what was lost

Reconnecting with family was a motivator for initiating methadone treatment

“I wished for the grounds to swallow me and disappear for good. I reflected on my life and indeed I was not the best mother to my children. I had let them down. That was my turning point to stop using drugs.” – [Female, age 46]

Methadone helped PWID feel positive about their appearance

“Coming for methadone has been so helpful to me because I am now back to who I used to be. I barely recognized myself before because I never used to shower, I never cut my hair at all, and I was always dirty and disgusting. When I started taking methadone, I started changing gradually. I started bathing and even went for a haircut. I started putting on clean clothes. When I look at myself, I feel I am back to who I am.” – [Male, age 37]

Being sober positively influenced life goals

“Now that I am sober, I do not want to even have friends who stay in the ghetto. I do not admire that life now. I know what I want to be in life…..I want to live a normal life, I want to go back to school, I want to be like other girls.” – [Female, age 23]

PWID preferred decentralized services and peer delivery

Transportation to clinics and complicated enrollment processes are challenges to uptake

“[H]ealth workers came and told us about MAT…They said ‘we do not deny that people use drugs, it is true, however if there is anyone who wants to stop using drugs, come.’ We were very happy when we heard them…..They left us with a phone number and said that this is their doctor’s number, “anyone who wants… the number is there”. The first person who called the number was told “I am in Butabika, that is where you should find me”. However, you could not just go directly to Butabika, you had to first come to this place and they make for you a file. Then you take that file to Butabika.” – [Male, age 42]

Long wait times and client-provider interactions posed challenges to facility-based service delivery for PWID

“The issue of going to the hospital gives us some difficulty but if they put the medicine at harm reduction [sites] it’s very easy……because these [providers] of harm reduction, they understand us and when they come, they treat us as people rather than at the hospitals. At times you reach there with an appointment but you still have to make a line and you may get thirsty for the drug while you are there. But if it is here [at the harm reduction site] they know my appointment and work on me immediately…” – [Female, age 26]

Co-location of services facilitates adherence through improved convenience

Getting my PrEP from where I get MAT is good because it is easier to access. And in case you want to know anything, it is easy to access the health workers and ask them anything that you want. I do not have to incur transport costs because going to [another location] to access PrEP is really expensive. It would be hard for me to get the refills from [another location], and so I am happy that I was given the chance to pick-up PrEP from where I am getting methadone from.” – [Male, age 31]

Peer delivery decreases stigma and improves accessibility

“Of course, the peers have the most access to us to provide PrEP to us because they can come to the community and find us there.” – [Male, age 30]