What made you decide to go into HIV care?
In 1996 I was evaluating a patient in the emergency room (ER) who presented with PCP [pneumocystis carinii pneumonia]. He overheard the ER staff remarking about how it did no good to take care of him since there were no medicines around to treat his HIV. I decided then that I would find these medicines.
What is the patient demographic of your clinic?
The clinic receives Ryan White funding, and a large part of the clinic's patients are from the unemployed, underserved community. We are a free health clinic with an urban population, but Kansas City has a lot of suburbia, so we have quite a few suburban patients as well. The patients are about 60% Caucasian, with fewer percentages of African Americans and Hispanics. We have over 500 patients at any one time, but we may only have each patient for a year or so. We are where they receive care until they become eligible for Medicaid or they get a job and can have a different provider. In the last two years, we have seen a rise in African-American heterosexual females. We have brought in so many women that they have actually been a majority of our newest enrolled patients.
You have recently changed positions; are you still at the clinic?
I'm changing teaching positions, but I am still going to work at the clinic. We have clinics five days a week. We encounter complicated drug interactions, and I am able to see five or six patients per clinic. My role is not a typical pharmacy role. I'm not doing dispensing of medications. I function more as a counselor who is there to design a regimen to optimize the patient's ability to take his or her medicines. I also try to answer other research-related questions. These questions are along the lines of "What's the number one side effect of this medication?" or "Do many people take this drug?"
What is the biggest challenge you find in caring for people with HIV?
I find there to be too much disparity in modern health care. We are able to get people in for the first couple of visits, but then we face a challenge in getting them to continue to come. There are many reasons for this imbalance in care, but we work to treat everyone like an individual.
How did you try to contribute to changing this phenomenon?
The clinic can change the way they give care based on how I observe the protocol of the distribution of medications. I answer questions for the academic situation, as well as for the clinic, and then we publish our results. One example of this was when we looked at African-American males' therapy success rates. I wrote the protocol and we came up with criteria for people to be involved in the study. African-American males had the worst response rates to therapy. We observed that they don't come back for their follow-up visits as often as some other groups. To solve the problem we began working with some of the churches in the area in order to learn more about the stigma and how it is viewed in the community, and try and integrate our services into the African-American community. After seeing how HIV is viewed in the community we held educational programs within the community to relieve some of the stigma. We haven't reanalyzed the data formally, but we have seen more African-American males coming back to the clinic after they are prescribed medications. We see them a year and a half later now, and we are seeing many more doing well on their therapy.
Does your most successful work come as a result of working in a team environment?
Absolutely. There isn't really a hierarchy that you might see in other situations. The nurses and I have a great deal of advanced training and we oftentimes go into the room and do an interview with the patient that would be analogous to one that would take place with a resident. It provides the physician with a better picture of what is going on with that patient. The team communicates so well that anyone could ask a question about anyone that we are treating. There is an immediate communication with the other team members. We report and hand off any patient issues that are going on. There are definitely defined roles, per the MBHA (Missouri Board of Healing Arts). The physician will be the one who really decides whether or not to take action with a patient. The nurses and I are there to support and act as advocates for the patient. I have worked with five different physicians at the clinic and they have all had a great relationship with the patients. They will remember things that the patient had mentioned the last time they were in.
What makes your team function so well?
Frank, honest and open discussions. Everyone expects to be challenged by other team members on every decision.
Why do you think people with HIV nominated you as their favorite pharmacist?
The reason I am up at 5 a.m. answering e-mails is because of my patients. I believe in putting everything I have into improving my patients' lives. I hope they see that when I talk with them, their partners and caregivers.
Is there anything special you try to do for people living with HIV when they come to pick up their medications?
We have a discussion with the patient to educate him or her about what is available for them. We give them suggestions about what we recommend they take. As I do not work in a traditional pharmacy, most persons coming to pick up medicines from me are study patients. However, as a pharmacist, I spend a great deal of time talking to patients about how to make their all medicines, not just antiretrovirals, fit into their lives.
I have always taken the perspective that, before we even talk about the meds, we have to talk about their routines. What is their world like? What do they do all the time? I want to get to know their sleeping habits, eating habits, any stressors in their lives, if they get breaks at work. When I introduce them to the meds I look at how they will to fit into the activities that are a priority in their lives. Their regimen doesn't have to necessarily cause a lot of stress to them or their lives. Most of our follow-ups occur when we call them at home, to assess if they are taking their meds correctly, but other patients call us or just drop by because they may not have a phone. We have a few homeless patients who pick up their meds in a pillbox. We may see a patient on the street and they will ask a question. The clinic is located in the area with the heaviest concentration of HIV-infected residents in Kansas City. We are in the community with them every day. We have a policy that we won't acknowledge them in public if they don't acknowledge us. Everyone knows me as the HIV pharmacist, so if someone is talking to me, people may make certain assumptions about the person.
If I were to follow you for a week, what would I observe you doing?
If you follow me for a week, you would find:
I also teach a number of classes that are specific for HIV -- as well as a number of infectious disease courses. The teaching aspect of my job generally occurs in the afternoon. Depending on the level of the students and intent of the course, there are not a lot of people who can teach HIV pharmaceutical class, but, for the general knowledge of the disease or the experience of the disease, there are many social workers and others who could give even better lectures than me.
What is the best thing about your job?
Patients smiling when they see me. I interpret that to mean they are satisfied with the care they are receiving. Also, to see them again means:
It depends on the patient, if we feel they need extra hand-holding, we may provide more of a nurturing environment. Some patients will not respond well to us encouraging them to come back. We always look at what is the best way to treat each individual.
What is the worst thing about your job?
Paperwork, because it keeps me from seeing patients. One 10-minute visit with a study patient gives me about two hours of paperwork. I have to report the information to the pharmaceutical company who sponsored the study and double-check and match all the facts. It is great to see the patients and see the data as they are generated, but they must be presented in triplicate so that everyone understands what is going on. One 10-minute visit with a clinic patient gives me (and/or the nurses) thirty minutes of paperwork. There are referrals to write out, and state and federal documentation to be made. We monitor the viral loads of the patients every three months, and if you multiply all those aspects by the full clinic of patients, you can see how time gets away from you as a clinician.
What is the biggest challenge you face as a pharmacist?
It is most challenging to predict drug interactions. There have been too few proper drug interaction studies conducted with real-world drugs and the antiretrovirals. We have to guess about how drugs may interact. We have a formula of medicines that we usually use in our patients, and as new meds are approved we put them on our list and watch those meds closely for any interactions. I don't think I've ever worked a 40-hour work week. I usually work 80 hours a week, up at 5:30 a.m. to answer e-mails before I go in.
What do you think is the biggest risk factor for HIV?
Lack of education amongst the fastest growing population right now, which is being infected via heterosexual transmission. We HAVE to educate those persons at risk who do not even consider themselves at risk. We also have to reinvigorate efforts to identify those persons in the community that are transmitting and have not engaged in care. This virus is still 100% fatal, but it first has to be transmitted.
What do you think are the biggest problems people with HIV face today?
One of the biggest problems facing people with HIV today is the social stigma associated with HIV. Another problem, as we make progress against the virus and, in some patients, get the disease to a place where it can be managed as a long-term chronic illness, we see the development of fat/endocrine anomalies (lipoatrophy, lipodystrophy, increased cardiovascular risk factors). These side effects present themselves in a form that literally changes the look of our patients. It also may (confirmatory data still out on this one) increase heart disease conditions. The more heart disease that occurs, the more need we have for cardiologists specializing in HIV and, eventually, more needs for transplants. Not too many places are doing transplants in HIV patients right now (but, hopefully, they will be soon).
What is the most important/memorable/useful thing you have learned from people living with HIV?
Courage in the face of a potentially fatal disease. I saw this with my brother, who had ALL as a child and we took him to St. Jude's in Memphis for a number of years. I saw it then in the faces of the children at St. Jude's and I see it daily on the faces of my patients.
How do you maintain a positive outlook and avoid burning out?
I can't quit -- the virus hasn't, yet.
If you weren't a pharmacist, what would your profession be?
A gardener or landscaper. I love the dirt and outdoors.
Would you like to dedicate this award to anyone?
Lori Esch-Swick, Pharm.D. -- she was an incredible clinician and researcher at the University of Buffalo. We lost her last May to cancer. She had incredible ideas of how to approach therapy and her manner with patients was inspiring.
Where did you grow up?
Southern Louisiana (Cajun country).
What did you want to be when you were a kid?
Not a kid.
Have you had any other types of jobs besides pharmacy?
Army National Guard (infantry), Class C electricians' helper on offshore platforms (that would be the lowest grade of electrician).
What made you decide to change?
Hanging upside down under an oil rig 70'-100' above the shipyard is a great motivator to do well in college.
Who have been the most influential people in your professional life?
Mr. Marceaux, my high school chemistry teacher, for helping me discover science, and Cecil Fuselier, Pharm.D., who introduced me to the world of clinical pharmacy.
When you are able to get some spare time, what are your hobbies?
Running, spending time with family.
Do you have a partner? Children? Pets?
Wife and two children who are 10 and six years old.
Where do you live?
I live in Kansas, which is still in tornado alley (you would think after five years in Norman, I would have learned my lesson). I did my doctorate in Oklahoma, I was applying for jobs around the country, and this free clinic position was the most active with patients and allowed me to do the most research. We live outside of Kansas City. I really like Midwest culture. I find it to be laid back and friendly, with giving and generous people who do simple things. Like being willing to let you out of a parking lot, or merge into their lane on a crowded street. Kansas City isn't as hectic as other cities like Chicago or New York. We have cultural life, like theaters, three or four symphonies, there are eclectic groups. You are exposed to other lifestyles. There is the international fair, and they take up an entire park for four days and people from all around the world demonstrate their culture through what they wear and ethnic food. It's wonderful to see, because it introduces you to all the other cultures that are present in the city.
If you could live anywhere (besides where you live now) where would you locate yourself?
Somewhere with a beach like San Diego or South Florida, both have unmet HIV pharmacy needs as well as incredible places to spend time doing nothing. I love the water, my dad had a shrimp boat and I used to spend days on the water. There are lakes here but it certainly isn't the ocean.
What's the best vacation you've ever had?
In Gulf Shores, Alabama, with my family.
What's the biggest adventure you ever had?
My time in the Louisiana Army National Guard.
What are you currently reading?
Gump & Co. (a gift from my father-in-law), The Competitive Runner's Guide (Bob and Shelly Glover's training manual -- pretty dog-eared) and just finished The Da Vinci Code and John Grisham's latest. Eagerly awaiting The Half-Blood Prince (J.K. Rowling's next book in the Harry Potter series).
Is there a book you would say has had a big impact on you?
And the Band Played On -- Randy Shilts's account is required reading for anyone who even contemplates working with HIV.
What kind of music do you listen to?
My taste is varied, it depends on the activity and company present, but I mostly listen to classical, horns and strings.
The purpose of this profile is to get a sense of you as more than just a pharmacist. Is there anything else you would like to share about yourself?
A couple of quotes:
Favorite quote: "Many questions are unanswerable. Many answers are questionable." This is the quote I have on my door for all who enter to read. Sadly, I have been unable to find the author. I even bought a Bartlett's to see if I could find it, but I can't. I use this often to relay that, just because we are doing things one way, it may not necessarily be the best way. We learned this with sequential monotherapy, adding drugs onto failing regimens and other regimen structures over the years. I also employ this when results are presented that just don't make sense or follow rational thought. I caution my students and those who attend my lectures that HIV knowledge is in perpetual motion, always moving, and sometimes what one presents as irrefutable is later withdrawn or shown to be incorrect. The heart attack rates of patients on protease inhibitors presented in Spain a couple of years ago is a classic example.
Quote #2: "Those who do not know history are doomed to repeat it."
I heard this quote from my brother, who was a history major, but I can't find the attribution for this one either. We see many clinicians and others learning about HIV only from the perspective of the situation since we have had protease inhibitors, and the like. They never experienced the frustration of not having any medicines to treat patients. I, too, did not have the maddening experiences others did in the 1980s, but have made it a point to learn about them as best I can from a second- or third-hand perspective. Randy Shilts's book helped there, as did In My Own Country and AIDS Doctors. This virus has been around for a long time -- clinicians who think they are trying "innovative" ways to treat patients would be well served to do their homework first.
Quote #3 (last one): This one I actually do have the author for. "People died while ... some scientists ... competed rather than collaborated in ... research efforts, and so diverted attention and energy away from the central struggle against the disease itself ... It is a tale that bears telling, so that it will never happen again, to any people, anywhere." -- Randy Shilts (1951-1994), And the Band Played On
This excerpt is taken from his prologue. I have this on a slide that I use in each of my educational programs. I apply this to pharmaceutical companies today. We have seen great strides in antiretroviral development and research, including pioneering partnerships between companies for improving how drugs are to be delivered in the future (Gilead and BMS [Bristol-Myers Squibb], for example, with the once-daily tablet of emtriva [emtricitabine], tenofovir [Viread] and sustiva [efavirenz]). We still see too much, in my opinion, jockeying for "best therapy ever" labeling instead of "best therapy for this patient in front of me right now who I will be seeing (hopefully) for the next 20 years."