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Conversations At An HIV Clinic: Medication Costs And Side Effects

“I like your watch,” pharmacist Jin Jun tells me as I’m sitting down to interview him.

I have a plastic runner’s watch, nothing special, but I see Jun is wearing something similar. “Do you run?” I ask him.

Jun is a tall, personable man who runs marathons, it turns out, and he enthusiastically invites me to run in a 5K race this weekend. I’m not sure I’ll be able to make it but I ask him for the details anyway.

Jun is equally passionate about his job, which one day a week involves helping the patients at the Carolinas Medical Center Infectious Disease Clinic with HIV drug adherence. I ask him how he handles cases like LaShana Walker’s, where some days she just doesn’t feel like taking her medications because they make her so nauseous.

After pointing out that every case is different, Jun tells me about some of the approaches they take:

We try before they start their medications to talk to them about the medications so they can anticipate the side effects and prevent them before they occur.

If that doesn’t work, a lot of times we can help them in a non-medical way by having them take it after food… trying to encourage them to basically give the medication a chance. Sometimes that doesn’t work, and then we try some pharmaceutical intervention.

We might suggest they try ginger ale — not that there’s actually much ginger ale in “ginger ale,” but sometimes the placebo effect might help them.

Most of the cases I see, is that the medication really is making them nauseated. The first couple months are the adjustment period.

After that, many patients feel much better, and so educating them about potential problems is key: “A lot of times they may actually feel worse before they feel better because a lot of times they think it’s the medication making them feel worse when actually it’s their body getting better.”

Jun says his job is satisfying when he can help a patient through difficulties and see their condition improve. But sometimes a patient simply “loses fight” and stops taking drugs altogether.

Last night, with RAIN case manager Amy Brooks, I visited one such woman (I’ll call her “Charmaine”). Charmaine is 37, with a 15-year-old daughter, and a year ago, Amy thought Charmaine was about to die. She was depressed, anxious, lonely, and had given up on her medications. Amy suggested that Charmaine check into the House of Mercy, where AIDS patients once went to die, but now sometimes are nursed back into health. The prospect of living away from her daughter scared Charmaine into resuming her medications.

Now Charmaine is doing much better, but still faces many problems. Charmaine is one of 14 clients Amy serves, and each of them is in a difficult situation. Amy tries to check in with Charmaine around once a week, each time setting goals for their next meeting. Last week’s principal goal was to stay on medication, and she told us she had done well. Like Charles, she needs to take a complicated mixture of pills each day. She hates them.

Unfortunately, Jun tells me, it may be difficult to reduce the number of pills she’s taking. “One of the medications we like to start off patients with is Atripla,” Jun says. “It’s three medications in one pill. The one downside is if you miss too many doses, you can quickly have resistance. If you have resistance, it pretty much means you can’t use it again.” Jun shows me a graphic he likes to share with his patients. It contains a graph that looks something like this:

The idea is that your T-cell count fluctuates daily. As long as it stays above a threshold barrier, due to taking your medications, then strains of HIV virus resistant to the medications are unlikely to develop. But if you miss your meds, even for a single day (marked with an asterisk), your T-cell count can drop below the barrier, and you’ll be resistant to those drugs.

This reduces the treatment options available for someone like Charmaine. There are fewer medications that will work on her strain of HIV than for others, and this is compounded by the fact that she hasn’t been good about taking her drugs in the past.

Charmaine’s other goals for the week were trying to reduce her isolation by meeting others like her, and going for walks to stay in shape. “That hasn’t worked,” Charmaine said. Amy pointed out that they had talked about going to an HIV support group, but Charmaine said it’s hard for her to remember to go. Amy suggested that Charmaine tape a reminder to herself over her bathroom mirror. By the end of our meeting, the reminder was in place. But Charmaine’s daughter told us her mom would probably forget the driving directions Amy had given her for getting to the session.

Whether Charmaine’s anxiety, depression, and forgetfulness are symptoms of the AIDS or her treatment, they’re clearly making her situation worse. Amy urged her to see a psychologist or therapist about these problems. Charmaine was reluctant, worrying that she’ll be prescribed yet another pill. Amy pointed out that treatment for her mental problems could make her feel better, and even make it easier to take all those pills.

After we left Charmaine’s apartment, Amy wondered whether any of her advice sank in. Clearly her daughter is an important inspiration to her. “She’s even called paramedics and ambulances for her mother,” Amy told me. “It’s sad that she’s had to learn how to do that.”

Back in Jun’s office, I ask if there’s anything else he’d like to add.

One of the frustrating parts that still bothers me today is the fact that insurance companies and manufacturers seem to be in more control of a patient’s healthcare than the doctors and the pharmacists themselves … I’ve talked to more and more patients who can’t afford medication, even with insurance. Companies are changing coverage, increasing deductibles. I had a patient who came in a couple weeks ago, and he told me his copay was $1,000.

Needless to say, the patient couldn’t afford it, and Jun ended up negotiating with the pharmaceutical company on the behalf of the patient, eventually convincing them to subsidize the drugs. But that’s not what he signed up for when he became a pharmacist. Unfortunately, that’s part of what his job has become. I ask if he thinks drug prices will ever come down. “I really don’t think they will.” He shakes his head. “I see them stabilizing, but I don’t see them coming down.”

*This blog post was originally published at The Daily Monthly*

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