Overcoming Local Barriers to HIV Care in Your Community: A Patient Advocate’s Perspective

I am currently based in London but work with women from all over the world. Although I feel grateful for the access to treatment we have, not everybody in the world has access to treatment, care, and support. As a patient advocate and a patient, I feel the barriers to treatment for women here can also affect women globally, but some barriers also depend on where you live. Here is my take on how local barriers to HIV care can be addressed in clinic.

Treatment Literacy: Patients Asking Questions and Making Informed Choices
Questions patients often ask are: What is antiretroviral (ARV) treatment? How does it work? How does it control HIV? Why is it important for me to adhere to treatment? What is adherence? How does it relate to my taking treatment correctly in order for me to have an undetectable viral load and a good quality of life? I think a lack of understanding of the basic aspects of HIV treatment or treatment literacy is one issue that contributes to nonadherence to treatment. From my perspective, there are 3 types of patients who come to clinic. The first type are those who are well informed and have done their reading and research. The second type of patients want to hear what the healthcare professional (HCP) thinks will be best for them and what the HCP thinks they should take, and the third type of patients are not comfortable or confident enough to ask any questions about the basics of their treatment or any adverse events they may be experiencing. They may come from a society where asking a doctor or someone in authority a question is not done.

For that third patient type, when it is time to start medication or after they have started taking medication, they often have not had the conversation with their HCPs that would enable them to make an informed choice. I think when somebody is starting treatment, it is important to have that conversation, to have the patients consider their lifestyles and whether the available treatment options are compatible with their lifestyles or will further complicate the issues they face. We are lucky now because we have many treatment regimens to choose from that work differently for different people.

Issues While on Treatment

Addressing Adverse Events
During the early days of HIV treatment, the aim was to get to an undetectable viral load. The key point was that a person was doing okay as long as the treatment was working. However, in my case, for example, one of the first regimens I took gave me very severe diarrhea, but I did not feel able to talk to my provider about it for a number of reasons.

First, at that time, I felt embarrassed and did not want to discuss it with my HCP. I think not feeling comfortable talking about problems is an issue for many people, even though HCPs hear all sorts of things.

Second, my treatment was working—I had an undetectable viral load. Apart from the adverse events, everything else was okay. I was doing relatively well so I did not want to change anything.

Third, my vanity—the fact that I remained a size 10 for several years without having to do any kind of exercise—stopped me. I told myself that it was not so bad after all, but eventually it became too difficult and I talked to my HCP about the diarrhea.

The Importance of Good Communication With HCPs
Patients may not know that they do not have to tolerate adverse events and that they should let their HCP know if they do have them. The HCP needs to know what the adverse events are, how often they happen, how long they last, and how much their quality of life is affected. If patients cannot tell their HCPs this information, then their HCPs cannot understand the severity of the complication or do their best for the patient. A best practice for me is to write down everything that I experience because it is so easy to forget something in between appointments.

Psychosocial Issues
I speak from a woman’s point of view, but men can also experience psychosocial issues from living in a household where they are emotionally and economically dependent on their partner or where they experience intimate partner violence. Such situations may make it difficult to take HIV medication properly and many people must hide their HIV status and medications.

Access to HIV Care
Lack of access to treatment and medical care in different parts of the world can also be another issue for women. They may live in rural areas where the clinic is miles away, and they may not have the bus fare to go to the clinic to access needed medications. Finally, even when people have access to medication, mental health issues may cause them to feel that taking HIV medications is a constant reminder of their HIV status. Patients may choose to not take their medication to feel in control of their bodies.

What HCPs Can Do Better so People Feel Comfortable Discussing Adverse Events and Adherence Issues
Despite short appointment visits, I think that encouraging patients to speak by asking them open-ended questions that require an answer is important. Follow up with motivational interviewing if needed. Help patients understand that it is okay to ask questions and that you are listening. HIV has been around for 40 years and patients and HCPs continue to learn together. HCPs can refer patients to support organizations, peer mentors, or treatment advocates like myself, because we have the time to sit down, talk, draw figures, and explain adherence and viral load to patients in patient friendly language. As I mentioned earlier, it is important to understand that some patients are happy with their treatment, but others are not and are hesitant to ask questions. In that case, patients can bring a peer mentor or trusted person to help them ask their questions at the visit.

Final Thoughts
In addition to lack of treatment literacy, I think that lack of research literacy is another issue. I think it is important for women to be proactive and get involved in clinical trials because a lot of the medications we now take were actually tested in studies that enrolled few women. HCPs should not be afraid to ask patients to take part in a clinical trial because patients are from all walks of life and can now make an informed choice. I think it is important for HCPs to understand that patients are individuals who may need help to say what is on their mind about their treatment or even to ask for the information needed to make informed choices.

Your Thoughts?
In your community, what is being done to identify and reduce the barriers to HIV care and support when treating women and other persons with HIV? Please answer the polling question and join the discussion in the comments section.