My son needs someone that understands what he's going through. He was diagnosed with HIV about three years ago. He will not take meds at this time. I've tried to help him but haven't been able to reach him. He needs the help of someone who knows what he's going through.
--Worried About Medications
Dear Worried About Medications,
It is not uncommon for people living with HIV (PLWHIV) to avoid taking antiretroviral medications. In fact, in my 14 years of experience as a clinician working with PLWHIV, negotiating engagement in medication seems to be common. However, the reasons for resistance or interruption vary from client to client.
Here's what I know about medication management based on my experiences with clients and my training as a social worker. People do not take medications if they cannot physically access them. People will not remain on their medications if they do not trust the medication, the manufacturer, and the source or sources that provide the medications, including doctors, clinics, and pharmacies. People of color in particular have distrust in these very systems based on historical and personal experiences. People do not take or remain on medications if they lose their will or motivation in life, career, romance, or family. People do not start or remain on medications if there are barriers to medications like money/payment, stigma, transportation, misinformation, or advice. When you think about what you know about your son, what if any of these ideas apply to him? How would you know?
In the past I have spent a great deal of time with clients speaking to them about the reasons for and sequence of events that led up to interruption in their medication regimen. I can also recall times in my own life where insurance lapses and payment ability have prevented me from accessing medications or interventions. Most commonly, after solving access barriers, clients will identify mental health or mood as a cause for interruption of, or resistance to, taking antiretroviral therapy (ART). For some, it is a matter of identity and/or avoidance; if you do not admit to yourself that you are living with HIV and need ART, then things can stay the same. HIV changes things. HIV changes your life. Starting medication validates your diagnosis and asserts this change. How many times have you come across people in your life who refuse to accept upsetting or scary information or circumstances? Denial and avoidance are coping mechanisms for many people.
Some of my clients have struggled with beginning or remaining engaged in ART treatment due to their ongoing battle with depression or another emotional or mental health concern. I once worked with a young man who struggled to fill his prescriptions, keep track of his medications, take his medications, and show up to medical appointments due to his chronic depression. Depression can be debilitating to many people. If you are feeling deflated or overwhelmed, your ART regimen may no longer be a priority.
Of course, we want to make sure folks remain engaged in their medication treatments and in behavioral health care if they choose to do so. Often I will work with my clients to alleviate as many barriers as possible, including setting up insurance or free medication programs, setting up home delivery for clients, providing pill boxes, having clients monitor their engagement and feelings about their medications in their weekly journals, and providing psychoeducation as needed.
The most helpful thing anybody can do is create safe and brave spaces for PLWHIV to speak freely about ART, their commitment to ART, and experiences living with HIV, and provide the opportunity to ask questions. I hope you will share this article with your son and that both of you can have an honest and supportive conversation about his concerns and your worry. I hope that if your son wants to speak more, that he is able to find a therapist who has experience working with people living with HIV, and that he finds relief in therapeutic services.
I wish you both well.