Guest Blogger

The Secret Weapon in HIV Treatment

Filed By Guest Blogger | November 07, 2009 12:00 PM | comments

Filed in: Living
Tags: drug abuse, HIV/AIDS, medication, mental health, serostatus, t-cells, treatment, viral load

Editors' note: Greg Smith is a gay, HIV+ native Montanan, a Rome-educated former priest who is now a mental health therapist, health educator, activist, spiritual adventurer and overall wiseguy who loves to write. He blogs at From Eternity to Here.

greg.jpg"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) 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 have a choice. 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.

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Thanks for writing this. I'll freely admit that I don't know much about HIV meds, and I think if more people understood what it's like to be a PWH that we'd see more support for programs that help keep people healthy.

Michael Crawford Michael Crawford | November 7, 2009 8:15 PM

This is a fantastic post. There's not nearly enough smart discussion of HIV issues in our community anymore.

Thanks! I hope it keeps the discussion open and ongoing- I hope to write some more on these issues in the future.


The Bilerico editorial team agrees that more posting about HIV issues is a goal of ours.

I think that part of the problem with adherence to the daily regimen is a yearning for that time when the HIV + person didn't have to take pills every day to stay alive. My Husband and I played racquetball every weekfor years with an HIV+ friend who suddenly announced that he had stopped his meds. In the weeks that followed, he would claim that the fact that he was still feeling well was proof that he had been cured. Soon enough, within a few months, his viral load was again in the danger zone and he went back on the meds. We have a doctor friend who ran a drop in clinic for HIV+ people. He left it and went into private practice because he burned out over having to daily deal with a flood of people who would say yes,yes to the treatment and then be careless with adherence. I think that drugs and alcohol, while understood to facilitate the spread of HIV, are often not appreciated as the reason why the daily regimen doesn't always work. I hope you will have something to say about that speculation.

Here's to many more contributions from you, or, (and this is sure to make our classmates cringe) Ad Multos Annos!

PS: I case you are wondering, a good number of priests read us.

Thanks very much for your words, kindness and, due to our shared experience-fraternitas.
Looking forward to more collaboration,

Thanks for this wonderful post. I have a friend that I know is HIV, although he hasn't shared that fact with me yet. I don't want to ask him about it, because I want him to have ownership in telling me. It's difficult though, as I know he uses drugs recreationally, and I know that the drug use probably interferes with his scheduled medical regimen. It's probably time to choose life and health over the risk of a lost friendship.

bigolpoofter | November 8, 2009 2:36 PM

Having said that, I didn't have a choice.

From one HIVer to another, bullshit!! The perceived imperative of immediately starting meds has blinded us to the fact that every time we open a pill bottle, take one out and swallow it, we are taking the choice to take meds, whether we understand all of the science behind them and the physical and emotional aftermath of consuming them. In the early days following a dire diagnosis, one's choice is heavily influenced by the specter of death. After months and years of subconscious choice turned into habit and ritual, fascination by LBM ("life before meds") and hope for averting danger lead one to risk no longer taking the choice to take meds, or not taking that choice on a regular basis. Returning to the ritual of medication then becomes a far more conscious and real act than beginning to take them may have been.

That said, taking anti-retrovirals makes the HIV diagnosis more real in our lives than an antibody test or Western Blot. Yet, our support systems that do exist weight counseling heavily towards the time of diagnosis, with little to none available for the time when meds are pushed upon newly-minted HIVers. We need to develop "HIV Boot Camp" program for newcomers to this disease, not the lick-and-a-prayer approach currently given to inducting us into living with HIV! Who wants to help make it happen?

Ah, the perils of metaphor.
You're right of course.
I do appreciate your passion and conviction, and based on my own experience with clients, Medication Boot Camp would be an awesome program/process to assist in fully making that decision a real and informed one.
I'm in.