“I’m not taking my meds.”
That was out of the mouth of an HIV+ client more than halfway through our session.
I’ve heard this before and I wasn’t ready to go into emergency mode- yet.
“How long has it been?”
“Almost six months.”
OK, I’m in emergency mode.
The most effective HIV medication regimen is faithfully followed every day. There is room for a few lapses, but most experts agree that between 93-95% compliance with medication is necessary in order to utilize the full effectiveness of the medication and maximize the length of time the meds will work for an individual.
Skipping a dose or two of medication may not be catastrophic, but it does usually create a spike in viral load which in turn strains the immune system.
For people with HIV, who have immune systems which are “always on,” that strain can have visible consequences such as heavy fatigue, memory and other cognitive difficulties and a susceptibility to secondary illnesses such as colds and flu. There are also the side issues of depression and anxiety which can easily accompany any illness.
I was especially concerned because this client was still on the first regimen prescribed, and it’s generally believed that the first regimen will last the longest, so it’s important to help people maintain adherence from the start. HIV is a tricky little devil, it’s prone to mutate relatively quickly and develops resistance to treatment at a clip that keeps researchers working to create new medications and strategies at a steady pace. Stopping medication can speed up the resistance process.
But there are several other things that I know.
I know this client had been diagnosed with a high viral load right from the beginning, that he really had little choice about whether or not he was ready to commit to a lifetime of daily medication, treatment was necessary immediately.
I know that people who have to start medication very quickly after diagnosis are often overwhelmed by the shock of the news and the needs/fears involved in telling support people/families/partners, etc. The sudden worries, anxieties and frenzied thinking can last for quite a while. They are not always in the best place to make a lifetime decision. People in that stage may have to depend on loved ones to help them with treatment adherence.
I know that it’s vitally important that a PWH (person with HIV) be ready to commit- treatment adherence is much higher for those who have taken the necessary intellectual, emotional and physical steps to understand the importance of medication in their lives. One of my friends (who knows more about HIV meds than many doctors I’ve met) has said mental readiness is just as important to consider in making the decision to begin meds as Viral Load and CD4 counts. It’s that important.
I also know that HIV, untreated, damages the human body in ways that we may not realize for many years- it may be “dormant”, but it’s not idle. There seem to be two camps here. The first says everybody should take meds as soon as they are diagnosed to stop the damage of HIV in the body and lower the possibility of transmission to others. The second says that the meds and the accompanying side-effects are more damaging than HIV and one should resist taking them until they absolutely have to.
I tend to go towards taking them earlier than later simply because most studies (including the most recent) show that early treatment significantly prolongs life and health, and if I live longer, I might live long enough to be cured, or at least have a more effective treatment.
Having said that, I didn’t feel I had a choice. It was medsimmediately or slow, painful death. I was one of those whose first diagnosis was HIV/AIDS- my CD4 count was 101, well below the AIDS definition line of 200, and I was very sick. It was important that I get on meds as soon as I could. And I did- the very next day, in fact. And I haven’t looked back.
I’ve missed one dose in 3 years, and that was because I was traveling in Europe and got the time changes mixed up. I’ve made taking meds part of my life, a good part, because I decided very early on that I wasn’t going to suffer because of my treatment.
When my doctor and I chose a treatment option, she explained to me the importance of taking them at the same time every day, and that my particular medicines required food to work properly. She then said, “Okay, let’s talk about the side-effects.” I quickly said, “Let’s not. I don’t want to put that stuff into my head right now. I’m just going to anticipate not having any if that’s all right with you. If I feel something weird going on, I’ll call you, okay?”
It was. And so my relationship with HIV meds was established on my terms, and (ironically?) I haven’t felt most of the things people often report while taking them. I also know that it’s a verifiable scientific fact that people over-report side-effects, and I just didn’t want to go there.
I have an interesting relationship with my medication. I refuse to hate them- they’re saving my life, and I refuse to complain about them for the same reason. I take my pills every morning, and I do something that some people find hokey, but it works for me. I hold them in my hand right before breakfast, look at them and say “Thank you. I hope someday I don’t need you,” and then I swallow/choke them down (there are 11 pills in my hand, including supplements).
So, as far as my client was concerned, I had a few issues to deal with:
1. I had to make sure he knew all the facts about the consequences of his “holiday”.
2. Was he then ready to get medical attention?
3. Was he ready to start treating his HIV?
4. Was he an imminent danger to himself or others?
We talked for a long time, eliminating in my mind any thoughts of danger to self/others, and taking a good, hard look at the possibility of depression in his avoidance. He is not completely open about his status with his friends and family, so we talked about his need to have people honestly care for his health, and that included himself.
He also decided that this lapse had actually helped strengthen his resolve to resume his treatment. We then made an appointment with his doctor. On the doctor’s advice he resumed taking his medicine that very day, and has remained consistent as of this writing. So far his regimen is working and he feels more committed and now has more support from people in his life to help keep him on track. He felt good enough to give me permission to use his story.
It’s just this kind of support that counts almost more than anything else. If people feel loved and supported, they naturally want to take better care of themselves- they make healthier choices and that includes adherence to their drug regimen.
That support doesn’t just come from other people- So, if you’re a PWH, look for ways you can support yourself and care for yourself-do something nice today, just for you. If you know and/or love a PWH, tell them how important they are to you- show them you care.
Simple? Yes, but the simplest options are often the easiest to overlook, open secrets if you will, and they can be extremely powerful.
Powerful enough to save a life.