In her 26 years of living with HIV, Kneeshe Parkinson has taken thousands of pills. Those thousands of pills were weighing on her mind when she opted for HIV treatment that better accommodated the busy life she leads.
She is a single mother raising a daughter, she works in a community health care clinic and she takes evening classes twice a week. Aside from the burden of having to take a pill every day, just seeing the pill was sometimes difficult for her. “Taking pills and looking at the pills is a constant reminder,” the St. Louis resident says. But, she adds, switching to long-acting injectables has changed how she looks at her life and given her a bit more breathing room. “It clears so much from your mindset,” she says. “I can take a deep breath and just really breathe.”
Parkinson, 45, took her first shot of Cabenuva (cabotegravir plus rilpivirine)—a long-acting injectable HIV treatment that can be taken either once a month or once every other month—on a Friday in April, which she now references as the best day of her life.
When her pill reminder app pinged her phone on Friday, April 28, 2023, she didn’t interact with it at all. She didn’t answer the question “Yes or no?” asking whether she’d taken her meds that day because earlier that afternoon, at 3 p.m., she got her first injection of Cabenuva, a long-acting treatment for people living with HIV. “That was a new day for me,” she says. That same night, a girlfriend asked her whether she had taken her medication. “Girl, I don’t take no meds!” she responded. “I already took the meds!”
On Facebook, Parkinson shared a couple of photos she snapped to commemorate the moment—one of her about to get the shot and the other of the needles lying there, filled with medication ready to keep her undetectable. It only makes sense that Facebook would hear about this momentous occasion. After first learning about long-acting injectables at a medical conference, Parkinson later saw others gushing over them on social media, which helped convince her that she was a great candidate for making the switch from a once-a-day pill to the shot, which, after two injections one month apart, only requires six provider visits a year to administer.
She no longer worries about leaving a room to take medicine, making an excuse to go take a “potty break” or explaining to someone why she is taking a pill in front of them. In the days following her first appointment, she was able to visit a bed-ridden friend in the hospital and stay with her, uninterrupted, until 9:45 p.m., never needing to leave her friend’s side as nurses stopped by to help her. “Just having more free time is valuable to the mindset of a working mom,” she says.
And work she does. In addition to raising her 21-year-old daughter, Parkinson works in health care full-time, helping people who have lapsed in their own HIV care make their way back into a clinic. On top of that, she’s currently taking a course with 23 other people in her field to sharpen her skills.
For Parkinson, the bimonthly injection is more than just a reprieve from the daily toll of taking a pill, it’s also a solution to the many problems that sometimes conspired to put a gap between her and her meds when either traveling (for work or social events) with her medication or waiting for it to be delivered. She used to divide her meds into two separate pouches just in case something happened to one of them. She sometimes ran out of pills just as it was time to travel. If she was at a conference in a large hotel space, she sometimes had to do a hefty bit of walking between the main event and her hotel room to take her pill. And when it came to having her meds delivered, she sometimes just had to pray that a stoop thief didn’t scoot off with her pills. “It’s just those things that constantly remind you about the song and dance,” she says. “Those scary, vulnerable pieces.” Now, with a long-acting injection, those worries regarding her medication are far from her mind.
To obtain Cabenuva, Parkinson had to advocate for herself. She believed she was a great candidate. Aside from her daily pill for her HIV, she took no other medication. However, when she brought up the possibility of going on the drug, her doctor, Parkinson says, turned “red in the face” and made excuses as to why the treatment was not the best fit for her, even as she laid out the case in favor of the switch. What’s more, her doctor said she wasn’t sure whether the AIDS Drug Assistance Program would cover the medicine—it did!—and that it required completing too much paperwork.
“This is something I really want to do,” Parkinson says she told her doctor. “I said, ‘I’m going to get on this injectable and advocate for myself.’ You won’t see me walk back into your clinic after this conversation.” She continues, “You’re the expert in your body and your life and what your needs are. Not the doctor.”
When she switched doctors and told him that she wanted to start on a long-acting HIV treatment, this time there were no roadblocks. Her doctor did her lab work to confirm she was undetectable. Within 72 hours, her results came back, and she was approved to take Cabenuva.
Parkinson’s side effects were minimal. A few days after her appointment, she says she had soreness, but, she says, “I got up. I wasn’t tired or groggy.”
She looks forward to her follow-up appointments, as they are a reminder of just how much time she has in her day to fulfill her roles as a mother, health care worker and student. “I only go six times a year to see the nurse,” she says. “That’s a big difference!”