Cathy Lammers sits at a high, tiled table at Partners Sports Cafe, a gay-friendly restaurant and bar that just opened at Fifth Avenue North in St. Petersburg, Fla. On the table, next to a basket of fried calamari, is a clear plastic tub containing a dozen medical-orange pill bottles. A few of the bottles are short, others 5 inches tall. All are empty, but it’s not hard to imagine them full of HIV medications.
“The big thing is to take your meds religiously,” Lammers says. “When you take 15 meds a day, it’s very difficult.”
She points toward the tub of pill bottles. Then she sets a perforated sheet of blister-packed pills on the table. It looks like a larger version of the foil-and-plastic packaging used for cold tablets but still slim compared with the tub of pills. Each square on the sheet holds four or five candy-colored capsules. The paper backing is marked with dates and times. One perforated square for the morning, one for the evening. No army of pill bottles to confuse or overwhelm a patient.
“It really makes a difference in adherence,” Lammers says, tapping a finger on the blister pack. She has the deep tan of a sun worshiper set off by bleached blond hair. When she talks about the packs, her grey-blue eyes light up.
Extolling the merits of these pill packs is more than a job for Lammers, a pharmacy care coordinator of HealthStat Rx in Largo, Fla.
This simple little packaging might be saving one of her best friends’ lives.
Lammers’ company, based in Atlanta, created a specialty pharmacy that makes it easier for patients with HIV, AIDS and other chronic diseases to take their medications. Its Largo satellite is the only pharmacy of its kind in the region — the business, possibly the only one in the country — that has figured out how to get lifesaving HIV medications into patients’ bodies by combining smart design and case management.
Lammers has seen what happens when patients don’t follow their prescribed drug regimens. She was a caseworker for local HIV-positive patients for 10 years before making the switch to HealthStat. Over the years, she witnessed noncompliant clients become resistant to one, then another and then another class of HIV drugs, leaving them with nothing to fight the infections that eventually killed them.
Then she watched her close friend and former coworker, David Karst, go from habitually missing his meds to being a model of drug adherence after he switched to the HealthStat pharmacy and started getting his pills in the blister packs.
The first time Karst, 58, quit taking his medications was in 1989, not long after he was diagnosed with AIDS.
To be fair, it wasn’t even his prescription. Karst was living in South Bend, Ind., taking care of his partner, Randy Jordan, who was dying in a slow fight against AIDS. The Indiana University Hospital doctors put Jordan on azidothymidine, or AZT. Because they lived nearly four hours south of the hospital, the doctors wrote prescriptions for three months’ worth of AZT at a time.
Karst would occasionally take some of Jordan’s pills.
Originally developed as a potential cancer drug, AZT was the first real treatment against the AIDS virus. It would keep the illness at bay by stopping the virus from reproducing. In the early years of the epidemic, the average life expectancy of an AIDS patient was less than a year and a half. Now, 27 years after the disease was formally recognized by the Centers for Disease Control and Prevention, advances in drugs have made it possible to talk about AIDS as a chronic illness instead of a terminal one.
But those first drugs were far from perfect. AZT caused side effects like diarrhea, nausea, anemia and bone marrow suppression. It also had a reputation for killing patients only a little more slowly than the AIDS did. That’s why Karst quit taking Jordan’s AZT.
“I saw what it was doing to him,” Karst says. The AZT damaged Jordan’s blood, leaving him vulnerable to secondary infections. “At one point he got blood poisoning. It was a horrible four and a half years.”
In 1994, Karst started his own drug regimen. His immune system was weakened. His CD4 count, the measure of immune cells fighting HIV in each milliliter of blood, was down to 14. In a healthy, HIV-negative adult, that number usually falls between 600 and 1,200. He was supposed to take 55 pills per day. They made him nauseated, gave him diarrhea. The sheer volume was hard to stomach. He suffered from neuropathy, a loss of feeling in the tips of his fingers and tongue because of the medications. He quit the drugs again.
Adhering to the drug regimens — which can include upwards of 15 different drugs per day — can be difficult. People with HIV in North America only take about 70 percent of their prescribed regimens. “They miss about a third of their doses overall,” says Dr. David Bangsberg, who works for the Harvard Initiative in Global Health at Massachusetts General Hospital and has studied rates of adherence in North America and Africa.
More than one million Americans are estimated to have the HIV virus, about 38,000 of whom live with AIDS, the more advanced stage of the virus.
“Side effects are a big problem,” says Dr. Barry Rodwick, an HIV specialist in Safety Harbor, Fla., and Karst’s physician. Rodwick has worked with HIV-infected patients since 1992 and can mark off a long list of reasons people don’t adhere to the drug regimens: the number of pills someone has to take, the number of times per day they take them, the busyness of their schedules, the cost of co-payments, the fear of being outed as HIV-positive. “Then you get patients who adhere perfectly,” he says. “You wonder how they do it.”
As bad as the side effects are, skipping doses can have a graver consequence. If the levels of the drugs in a person’s bloodstream dip too low, the virus can reproduce rapidly.
Worse, the virus can learn resistance to the drug. Immune cells, called CD4 cells or T cells, die en masse fighting the viral infection. This leaves the body open to other infections like pneumonia or meningitis that are common to AIDS patients.
But it doesn’t have to be that way.
Theoretically, if they take their meds and never miss a dose, they’ll last forever,” Rodwick says. “They can die from a heart attack or Alzheimer’s when they’re old.”
Before Karst’s partner, Jordan, died in 1993 — before the infections, before the fatigue and the disorientation, before the cryptococcal meningitis — “it was a perfect relationship,” says Karst.
“In the winter time, he’d wake me up, my breakfast would be ready,” Karst says. “While I’m eating my breakfast, he’d go down and he would shovel the walks, start the car, scrape the windows. … I brought home the bacon.”
They had been together 13 years.
“When he passed away, I went to the funeral home and paid for his funeral, and I said, ‘While you’re at it, just go ahead and set mine up,’” Karst says. There is a plot waiting for Karst below a double-headstone in South Bend, Ind. The funeral, the casket, the shipping of his body, it’s all paid for. “The only thing left to be done would be to engrave the date of death,” he says.
Six months after he buried his partner, Karst’s best friend in Florida died. Within a year, two or three more friends died.
“Before moving here, I had lost,” Karst pauses, takes a breath. “I don’t even know how many.”
“All those things kind of build up.”
He felt a survivor’s guilt, wondering why, if all his friends had died, was he still alive? Wondering when his time would come.
He stopped making plans. Stayed in the house. Would not commit to anything more than a week away. He went into what he calls “the two and a half years of dying with AIDS.”
Thing is, Karst didn’t die. Physically, he felt the same. He was still asymptomatic.
Then, one Christmas well into his self-imposed period of “dying with AIDS,” something broke. Karst was taking down the elaborate, red-themed Christmas tree he had put up, assuming it would be his last, when he started thinking about how he wanted to decorate the following year.
It was the first plan he’d made in more than two years.
“I just fell on the floor and started crying,” Karst says. “Out of realizing that death wasn’t around the corner.”
No longer actively dying, Karst needed something to fill his time. He considered teaching people to read, maybe volunteering at the library. He joined the AmeriCorps VISTA post, the domestic equivalent of the Peace Corps, where he developed a testing and counseling program for gay men at the now-defunct Suncoast Resort, a popular gay vacation spot on 34th Street.
Karst then went to work full time at the AIDS Service Association of Pinellas, which offers case management, support groups, counseling and a mobile testing unit. Karst is ASAP’s project coordinator. Six days a week, he tests and counsels men who have sex with men about their HIV statuses and how to protect themselves. “My friends all tell me I work too much,” Karst says. “But it’s probably part of what keeps me going.”
Lammers joined ASAP in 1999, after a couple of years as a case manager at another Pinellas AIDS organization. Lammers and Karst soon became close friends. When Lammers found out Karst wasn’t taking his medications, she turned from friend back to case manager.
“She’d ask me why I wasn’t taking my meds,” Karst says. The meds gave him regular headaches. The neuropathy, the loss of feeling in his extremities, still lingered. He suffered from lipodystrophy — losing the fat deposits in his cheeks, giving him a sunken face with sharp cheekbones.
But the real barrier to taking his drugs on schedule was time.
He had to juggle the AIDS drugs along with the drugs that counteracted the side effects from the AIDS drugs. Some were morning only. Some were evening only. With food. After food. No food. When Karst tried to use the weekly pillboxes, they would pop open and spill out in his pockets.
“Stop and think about having to take that many pills at a certain time every day and work that into the routine of what you’re already doing,” Karst says. “Sometimes it just becomes too much.”
Lammers started lobbying him to try the bubble packs at HealthStat.
The HealthStat model for HIV-positive patients was the concept of Patrick Dunham and Scott Zepp. Both St. Petersburg natives, they had left the state and were co-owners of a respiratory illness pharmacy based in Atlanta. Their business was delivering oxygen and breathing aides to patients’ homes.
After a few years, Dunham and Zepp saw an opportunity to expand the pharmacy’s services to a niche market where drugs were constantly changing and patients could benefit from personalized attention. In 2004, the Atlanta pharmacy started working with HIV patients. In 2006, they opened a satellite pharmacy in Largo. They offer free shipping nationwide, pharmacists on call 24/7, individual client case managers and the custom bubble packing.
Bubble packing isn't an entirely new idea. A 2006 study at Walter Reed Army Medical Center showed patients on four or more chronic medications had nearly 30 percent higher drug adherence when their medications were bubble-packed for them.
HealthStat doesn’t have in-house measures on bubble-pack adherence yet, but stories like Karst’s are encouraging.
HealthStat employees call patients and their doctors every month to see what is working and what isn’t. If a patient doesn’t need a monthly refill, it’s a signal the patient is missing doses and something is wrong.
“If they have missed doses, we want to know why,” Zepp says. “Maybe they’ll say, ‘that blue pill gives me diarrhea something fierce.’”
Zepp, who now runs the Largo office, attributes the success of the business to the personalized service. “We learn about their family, their dog, their spouse, their partner,” says Zepp.
“If we do the right thing and work hard, we’ll make money, and we’ll sleep at night,” Zepp says.
In April, before starting the bubble packs, Karst’s viral load — the number of viruses in a milliliter of his blood — was 70,800. Two months after starting the bubble packs, it dropped to 48. Almost undetectable.
Before the packs, his CD4 count, the measure of immune cells, was 63. It now stands at 147 – still not at normal levels but higher than it’s been in years.
“I probably have missed only four doses totally in two months,” Karst says.
Karst says when Rodwick saw his most recent lab reports, the doctor wanted to know how they were going to continue to keep Karst compliant this time around.
“I said we don’t have to worry about that,” Karst says. “This is it.”