Dispensing Kindness
At the Infectious Diseases Pharmacy of the Kaiser Permanente campus on Sunset Boulevard, brown paper sacks, grouped alphabetically by patients’ last names, fill the shelf nearest the door like a regiment of school lunches.
But rather than carrot sticks and cheese sandwiches, these bags hold vials of Bactrim, Retrovir and Viramune anti-nausea meds and anti-diarrheal meds, pain meds, steroids and anti-coagulants--the mind-boggling assortment of drugs that HIV and AIDS patients must take daily.
And like school lunches, the bags--sometimes 150 a day--are handed across the counter, from pharmacist to patient, with a don’t-forget-to-eat-all-the-carrots concern that is, if not parental, certainly a far cry from pharmaceutical.
“Now you’ve got a new one in here,” says pharmacist Joseph Chang to one patient, “and you have to take it four hours before going to bed.”
“Yeah,” says the man in the Timberland boots and baseball hat. “I’m flying next week, so these are a precaution.”
“How long is the flight?”
“Fourteen and a half hours.”
“Well, you’ll need to take these before you go to sleep. Not that you’ll actually get any sleep, unless you’re flying first class.”
“I wish,” says the patient, gathering up his brown bag, laughing as he leaves.
There is a surprising amount of laughter in the tiny waiting area--two chairs, really--that fronts the pharmacy window. Although called Infectious Diseases, the pharmacy caters almost exclusively to AIDS and HIV patients--men and women whose lives literally depend on complicated and overwhelming assortments of drugs. Old drugs, new drugs, experimental drugs, they are prescribed in continually changing combinations as doctors and patients seek a mixture with minimum side effects and maximum effectiveness.
Some of the new combinations have been wonderfully successful, elevating T-cell counts, reducing viral loads and carrying AIDS patients into the healthier realm of HIV carriers.
But even so, AIDS remains a debilitating, life-threatening disease. And yet, there is laughter. And salutations. And chitchat.
Behind the counter, the pharmacists--four men and one woman--move with back-brushing sidesteps. It is not a big space, but it is a significant one. About 9 years old, it is the first and only pharmacy of its kind in the Kaiser system. Most Kaiser hospitals now include part-time HIV pharmacists, although many of them were hired as recently as last year, and many of them trained here at the Sunset facility, near the Los Feliz area of Los Angeles.
“For years we were it,” says Bill Guyer, the pharmacy manager. “We had patients coming from as far as San Diego. We still get patients from the Valley and even Orange County because we stock all the medication. And because they know us and we know them.”
When Guyer joined the pharmacy staff more than six years ago, he effectively doubled it.
“We had this very tiny, dark, dingy pharmacy with a few drugs lying around,” he says. “There weren’t that many pharmacies catering to HIV patients. So we started asking the patients what they wanted.”
In the early ‘90s, there simply were not that many treatments, mainly a few investigative drugs and AZT, the virus-fighting drug approved by the U.S. Food and Drug Administration in 1987. Yet patients were still having to go to two or three pharmacies to get them, as well as their pain meds and the drugs to treat the AZT side effects. So Guyer and his then-supervisor Cliff Chen expanded the pharmacy’s inventory. And when the arsenal of anti-virals grew, so did the pharmacy, moving into a slightly bigger space.
With the help of then-intern, now-pharmacist Eric Beresford, they cleared out an adjacent closet and put in an HIV information center, chock-full of pamphlets and magazines, videos and fact sheets, explaining every possible aspect of the disease and its treatments.
Kaiser’s Sunset facility has had an HIV clinic since 1988 and conducts its own drug studies. Considering this, and its location, it seems natural that it would remain the health organization’s largest HIV treatment program.
“We have about 2,000 patients,” Guyer says, “and we see about 1,500 of them regularly.”
*
So regularly the pharmacists are on a first-name basis with most of them. But that’s part of the original plan, just like the staff’s refusal to wear lab coats.
“We need to form a trusting relationship,” Guyer says.
“This is a very private disease. Someone who doesn’t know you might be too embarrassed to tell you he’s having diarrhea 10 times a day. But we really need to know this. So we ask, every time they come in, how is it going? Are you experiencing this or that? And soon they feel comfortable.”
Sometimes even more comfortable than with their doctors.
“I have patients who will tell me things they won’t tell their doctors,” says Chang, who has worked at the pharmacy for two years. “Like if they haven’t taken a drug in a while. We try to spend a lot of time with them, sometimes 30 or 40 minutes. Doctors don’t always have that kind of time.”
“They’re great,” says Alfredo Carnot, who has been coming to the pharmacy since it opened. “They check the meds and know how they work together. They know more than the doctors do. I’ve seen them hold back a new prescription that might be a problem and call the doctor to change it. And they are very patient with us, because with so many meds, our moods change. Sometimes we’re real sweet, and other times we’re just as nasty as we can be.”
“Everyone there knows what’s going on,” says Robert Dal Porto, who has also been using the pharmacy since its inception. “They’re always accessible, and not just for Kaiser patients. I’ve been a community activist, and whenever we have questions about drugs or whatever, they have been really helpful.”
Guyer, Chang and Beresford all say it is the patients who teach them the most about the drugs.
“Long-term HIV patients are the most educated patients in the world,” Guyer says.
The pharmacists, in turn, have monthly meetings with doctors and nurses from the clinic and hospital. They also train Kaiser residents and take on an intern from USC every six weeks.
“We serve as a drug information center for the doctors,” Chang says. “We tell them how specific patients are doing, about the drug interactions we are seeing, and we educate them about new drugs.”
*
But a lot of the pharmacists’ daily work is helping the patients find the right combination of drugs and encouraging them to continue taking them.
“We’re seeing an adherence problem,” Guyer says. “People who have to take 30 pills a day get burned out. And if some of the drugs are having side effects . . . well, they just stop taking them.”
To make the pill-popping grind a little easier, the pharmacists put together charts for each of their patients, often complete with stickers of the actual pill, to help them track when each drug should be taken. Pillboxes the size of lunch trays are also provided by one of the drug companies.
And while the pharmacists encourage their patients to be honest, they aren’t above admonishing the ones who stray.
“Sometimes we have to scare them a little,” Chang says. “Because there are only about 14 therapies available. If you stop taking one, the virus can mutate and become resistant. Then we have to put you on another. If you keep jumping around, you’re not going to get better, and then you run out of options.”
The pharmacists are well aware of the power of the new drugs as well as their limitations. In the mid-’90s, they were losing as many as 10 patients a month; now the fatality rate is more like one a month.
But, Guyer says, they still get newly diagnosed patients--many of them young and heterosexual, and there has been a bit of a downturn among the long-term patients who are either becoming resistant to the available drugs or whose bodies are simply ravaged by the disease.
Almost all of the medications that stave off the potentially fatal viruses have side effects that can prove debilitating in the long run. Constant nausea or diarrhea, high fevers, hives and rashes, lethargy, memory loss, kidney damage--sometimes the side effects are as bad as the illness.
“We walk a fine line sometimes between quality of life and longevity,” Chang says. “Some of our patients are just holding on, waiting for the next new drug. But that will have side effects too. There is no magic bullet.”
Guyer is optimistic about drugs still in the experimental stage.
“A year or so ago, I was worried,” he says, “but there seem to be a lot of things in the pipeline. And we’re seeing a reduction in the number of drugs people have to take, which is a big step.”
Mary McNamara can be reached at mary.mcnamara@latimes.com.
(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)
Prominent Benefactors
The top 12 foundations in California and their assets:
*--*
County City 1. David and Lucile Packard Santa Clara Los Altos 2. J. Paul Getty Trust Los Angeles Los Angeles 3. William and Flora Packard San Mateo Menlo Park 4. W.M. Keck Fdn. Los Angeles Los Angeles 5. California Endowment Los Angeles Woodland Hills 6. James Irvine Fdn. San Francisco San Francisco 7. California Wellness Los Angeles Woodland Hills 8. Marin CF Marin Larkspur 9. William Randolph Hearst & Hearst Inc. San Francisco San Francisco 10. Weingart Los Angeles Los Angeles 11. Ahmanson Los Angeles Beverly Hills 12. San Francisco San Francisco San Francisco
Assets (in billions) 1. David and Lucile Packard $9 2. J. Paul Getty Trust $7.4 3. William and Flora Packard $1.8 4. W.M. Keck Fdn. $1.4 5. California Endowment $1.3 6. James Irvine Fdn. $1.1 7. California Wellness $1.08 8. Marin CF $0.9 9. William Randolph Hearst & Hearst Inc. $0.89 10. Weingart $0.8 11. Ahmanson $0.79 12. San Francisco $0.6
*--*
Sources: Southern California Assn. for Philanthropy; Community Foundation Silicon Valley
