I’ll never forget watching a co-worker take a new and improved HIV medication many years ago. The moment the pills hit his mouth, his face scrunched up with a look that said, “Yuck!”
“What’s wrong?” I asked him.
“It starts melting in my mouth and it tastes nasty,” he said.
I was so disappointed. This was supposed to be a kinder, friendlier new protease inhibitor that he was taking, Viracept. But there was no mention in any press release or in the package insert about yuckiness.
This is why we try to take up the slack in information with the Positively Aware HIV drug guide (and in other issues throughout the year as well). What are people living with HIV really experiencing when they take their meds?
Sure, HIV medications are needed. And we know they ain’t candy. But to have to go through what he went through, well, that’s hard.
I’ve worked on each of the 25 drug guides. I like to think of it as helping people prepare for what to expect. Sometimes, to help strengthen their resolve to stick with therapy. Always provide useful information.
The first time Viracept appeared in the drug guide, in 1998, activist Spencer Cox of the Treatment Action Group wrote, “Nelfinavir comes in blue tablets that begin to dissolve as soon as they touch moisture. This can be annoying if your hands happen to be damp, and downright nauseating if you don’t manage to swallow them on time.”
I wrote in the drug guide two years later, “Tablets begin to dissolve immediately in your mouth—yucky.”
I’m sure the word “yucky” doesn’t pass muster with the FDA.
‘Tastes like motor oil’ we wrote about the liquid formulation of Norvir.
As for the diarrhea side effect, official information didn’t quite cover the explosiveness of some of the PIs. How about this from that Viracept page in 2000: “Do not leave the pharmacy without anti-diarrhea medication available without a prescription, such as Imodium. Take a change of clothes with you when you leave home for the first several weeks.” Yikes.
It may be too informal for the FDA, but it worked for our pharmacist reviewer, who helped me hammer out that statement.
“Tastes like motor oil” we wrote about the liquid formulation of Norvir. That’s what people told me, and pharmacists confirmed it. Although, I always wondered how anybody knew. Sure, Norvir liquid has a look and a smell and a texture, but how the hell does anyone know what motor oil tastes like? Still, we got it. And we warned you.
It’s not always bad news.
Take Complera with food, we tell you. But one person’s doctor in Chicago prescribed it to be taken on an empty stomach. When he brought it up with his pharmacist, the pharmacist agreed with the doctor. Drug guide in hand, he had his social worker iron out the problem.
One woman told me that her doctor was not helpful when she experienced rash with Agenerase. Then she read our drug guide and saw that Agenerase has a sulfa component. She has a sulfa allergy. Mystery solved.
These stories are scary, but they’re another reason why we produce the drug guide—and every issue of Positively Aware. To give people a fighting chance in their health care. People could look at the drug label, but a community-based magazine is easier to follow. To be fair, the health care system needs the help. Providers are overwhelmed.
For all the effort I put into the drug pages, and the hard work of the pharmacists who review it and write it, I know that people love looking at the doctor and activist comments first.
Some activist reviewers are dry, but some are descriptive, making for some memorable moments.
“It’s good to know that there are options like this should I ever need it, but it also reminds me to take my little three-pill once-a-day regimen faithfully,” wrote Cathy Olufs in 2007, on Fuzeon, a medication that had to be injected twice daily.
“The first time I took Sustiva I was attending a meeting and the room was literally spinning. The drug’s biggest misfortune is its ‘altered state’ side effect and the fact that it will do you no good if you’ve been on the other NNRTIs,” wrote Matt Sharp in 2002.
My all-time favorite witty line came from Heidi Nass, and is apropos for the car theme of this issue.
In the 2005 drug guide, she wrote, “If 3TC were a car and turned up on ‘Pimp My Ride,’* it would be unveiled by Xzibit at the end of the show as FTC—newly tricked out, for sure, but the same under the hood.”
Funny or (usually) not, it’s been 25 years of tweaking HIV treatment with new information and changing paradigms. Or, as I like to think of Positively Aware in general, saving lives—and saving health. It’s been a fascinating journey on a road that continues to wind in new and interesting ways. See you here at some of the road stops.
* “Pimp My Ride” was a popular television show that ran on MTV from 2004–2007.