Pharmacist Kevin DeMass readily admits he’s been “hounding” his HIV-positive patients for years. Cajoling patients into taking their pills and seeing their doctors is part of how he keeps them alive. And, for the past few months, he’s been after them to get COVID-19 vaccinations.
HIV-positive Utahns are among those most in need of coronavirus vaccines, but many in that group have been reluctant to go get it.
Utah health officials emphasized the ease of getting a shot at mass immunization clinics at places like the Salt Palace in Salt Lake City, the Maverik Center in West Valley City and the Mountain America Expo Center in Sandy. And that scared off some HIV patients.
“They didn’t want to go to a mass immunization clinic and stand in line with thousands of their closest friends,” said DeMass, the president and CEO of The Apothecary Shoppe, who has worked with HIV and AIDS patients for more than 30 years.
It isn’t just that HIV-positive patients are afraid of being exposed to the coronavirus at the mass clinics. Many of them are worried about how the vaccines will affect them.
“Particularly for people living with HIV,” said Ahmer Afroz, the executive director of the Utah AIDS Foundation, “there’s concern about medication in general. Will their reaction to the vaccine be any different? Does this interact with their medications or things like that?”
According to the Centers for Disease Control and Prevention, there’s no extra cause for concern, and HIV and AIDS patients should get their shots.
And there’s also a “confidentiality issue,” DeMass said; patients worry about disclosing their HIV-status during the vaccination process. “They’re thinking — what forms do I have to fill out? Who’s going to know? Are you going to tell my employer? Is my partner going to find out? That cloud was over them.
“When you just stand in line, you don’t know where your information goes. And they don’t know who’s treating them.”
DeMass and his staff, on the other hand, their patients by name and provide the kind of personal care that’s almost unheard of in the 21st century. He has worked with tens of thousands of HIV-positive patients since the early 1980s — since before HIV and AIDS were even identified.
“He’s a gem,” Afroz said.
Trying to get vaccines
Getting COVID-19 vaccines for HIV-positive people is just the latest effort DeMass and his pharmacy have made on their behalf. And it wasn’t easy.
“Well, I had many issues. One of them was getting vaccines,” he said with a laugh. “I had patient after patient ... searching me out for vaccination help that I couldn’t give, because I didn’t have any access to vaccine,” he said. “So we had to devise a plan.”
Working with the Utah Department of Health, University of Utah Health, the Utah AIDS Foundation (UAF) and the Utah Pride Center, the pharmacy in the basement of the Salt Lake Regional Medical Center (82 S. 1100 East, Suite 104) became the “source for confidential vaccination in the same way that they’ve been receiving their confidential medical care here for the last 30 years.”
(DeMass has been on UAF’s board of trustees for the past 15 years.)
“We really do trust Kevin,” Afroz said. “The Apothecary Shoppe is somewhere we can send our clients and know they’re going to get the same high standard of care — I have to say better than the standard of care. Because with Kevin and his staff, it’s just a safe place. And you know that this really highly stigmatized population, particularly within the medical system, will get the best care.”
The Apothecary Shoppe was approved as a Phase 2 immunization site, meaning they could give shots after first responders, nursing home residents and other medical personnel got theirs, “but nobody knew when Phase 2 was going to start,” DeMass said. “And I had no idea when the vaccine was going to show up.”
In the meantime, he had “hundreds and hundreds of HIV patients calling me daily” seeking vaccinations. Like Mark, a man in his mid-30s who was referred to The Apothecary Shoppe after he was repeatedly in and out of hospitals because of HIV complications.
The pharmacy’s personalized care made a difference. “We had to sit down and figure out how in the world can I keep him alive and keep him out of the hospital,” DeMass said. “And guess what? He wasn’t admitted into the hospital for months and months and months because we got him on his meds. He never got confused. We made changes so he didn’t have to have 26 bottles of different medication sitting on his sink. And we built this enormous amount of trust.”
An HIV patient who’s healthy and doesn’t have comorbidities probably has to take 10 different medications daily. But in addition to the HIV meds, some patients also have prescriptions for anxiety, high blood pressure, asthma, allergies, high cholesterol, diabetes and more. “We have some patients that are north of 30 meds a day,” DeMass said.
That’s a lot to keep track of, even when you’re not in the midst of a pandemic.
“They’ve got to have a pharmacy partner who cares about them, who understands what their therapies are and can help them survive — or they won’t,” DeMass said. “When you go home and you’re looking at 30 prescription bottles on your counter, it’s overwhelming. That’s why Mark ended up in the hospital week after week after week.”
Mark contacted DeMass about getting a vaccine. “He said, ‘I don’t trust anybody else with my life except you,’” said DeMass, who had to tell him no and urged him to go elsewhere. “I told him, ‘Don’t wait for me,’ but promised the second that I get vaccines, he’s my first call.”
So when “out of the blue,” vaccines arrived in late January, “We put it in the fridge, I pick up the phone, I call Mark and say, ‘Your vaccine’s here, come down.’ He said, ‘Kevin, I just got it.’ And I said, ‘Terrific, you’re still alive. When it’s time for your second dose, come and see me.’”
But not all the HIV-positive patients he deals with got the vaccine elsewhere.
Despite the best efforts of state and local health departments, they couldn’t reach everyone who needed a COVID-19 immunization.
“These are isolated patients of all ethnicities,” DeMass said. “Extreme social distancers. Panicked. Many of them are unemployed. Many of them were working in the service industry. No insurance. No money. And hiding, because they don’t want to get sick and die.
“What if you didn’t have a phone? What if you didn’t have a computer? What if you didn’t have transportation? We had lots of pockets of people that we couldn’t reach, especially my patients that were critically ill and those living with HIV.”
Which left him with “an intake list a mile long” and “hundreds of calls” to make.
Thousands, actually — more than 4,000 calls to patients in the general Salt Lake City area, many of those people living with HIV. “I only reached the patients that were in my store in the last 12 months,” he said. “So there’s more, but they’re receiving health care elsewhere.”
(His youngest HIV patient is 8; his oldest is 84.)
There were more calls to make than he could possibly handle, so he recorded a robocall that went out to his HIV-positive customers.
“I’ve had several that are mad because they didn’t get a personal call,” DeMass said. But that just speaks to the personal touch to which his HIV-positive customers are accustomed.
“We call patients all the time,” he said. “Once you get here and you’re converted to our philosophy of patient care, you know that we’re going to hound you and hound you and hound you.”
The pharmacy calls patients if they’re late to pick up meds and get other vaccines. “They’re used to that treatment,” DeMass said. “When they’re outside of our care, nobody tracks them. They’re lost.”
Vaccines are safe for people living with HIV
According to the CDC, COVID-19 vaccines are safe and effective for HIV-positive people — as long as they’re not allergic to them. Is there any other reason not to get vaccinated?
“Not that I can think of,” DeMass said, “unless their viral load is very, very high or their T-cell count is very, very low. Then maybe I would have them wait a little bit and then reevaluate.”
One of the common misconceptions he’s run into is patients who believe that a COVID-19 vaccine might give them COVID-19.
There’s no chance of that, according to DeMass, “I’m not injecting them with live vaccine.”
Patients whose HIV is not under control are at greater risk of catching COVID-19, but they are at no greater risk of suffering any side effects from being immunized “as far as we know with the data that we have in the last 18 months,” DeMass said.
He urges reluctant patients to roll of their sleeves and get the shot. The Utah AIDS Foundation is also recommending its clients heed CDC advice and get vaccinated.
“I sing this song all day long. What have you got to lose?” DeMass said. And he has an answer for patients who are worried about possible long term side effects for a vaccine that’s less than a year old.
“I’m like, ‘Well, I don’t have the scientific data right now for 10 years, 15 years, 30 years from now,” he said. “But I can tell you that if you’re admitted to the ICU and put on a ventilator and you’re not responding, you’ll expire in seven to 10 days. That’s what you have to lose.”