How long have you been working as a pharmacist? What made you decide to go into HIV care?
I have been working as a pharmacist for over 10 years. I have filled prescriptions in hospitals, nursing homes, retail pharmacies and clinics, so I have been preparing meds for some patients living with HIV since I became a practicing pharmacist. However, I have only been focusing specifically on HIV as a special interest and eventually on a full-time basis since 2001. The opportunity to work with HIV patients presented itself when I was working in an outpatient pharmacy in the same building as the Infectious Diseases (ID) Clinic -- one of the ID physicians asked about a pharmacist, I volunteered and the rest is history.
Do you value functioning as a team in your professional working environment?
I nominated us as a team to share with others what our department is doing here in rural Eastern North Carolina. I think we definitely work together as a team. I'm the pharmacist on this team, which is a unique situation down here because a lot of clinics don't have pharmacists. It is an important position to include on your team, because HIV requires such intense medications. In the clinic the physicians are really good at taking into account that they have a pharmacist, and are really good as using me as a resource. I get lots of questions and referrals from them. My position is grant based, so it's not like they can say there is a cost-saving to a particular department, but we've done a study on the success rates of our patients, and patients who see me have a decreased viral count, and healthy T-cell count.
Can you tell me about your clinic?
Our clinic draws patients from over 30 counties in a 100-county state. We work with Ryan White or indigent funds, and I actually work in four different clinics. Part of our mission is to serve in rural clinics, and I go once a week to the three even more rural clinics and do case conferences with the physicians who work there. My home clinic is in Greenville. Working at all the different clinics gives me the ability to not have to tell patients to get on a bus ride for an hour, because I can go to them. One of the largest complaints we hear from our patients is a lack of transportation. People need to get tested earlier, so early intervention can be used and monitored. A lot of places are working to expand their services so they can widen the range of people they can serve.
What is your patient demographic?
We have 1,400 HIV patients in the main adult infectious disease clinic, and about 280 HIV patients in the surrounding clinics. I can't see 1,600 patients regularly, so I get referrals for adherence issues and other complications. I see HIV and hepatitis C patients. I work with about 20% coinfected patients. We are working on getting as many people meds as we can. I've only been here since 2001, when this clinic was infectious disease. We see a lot more people who can tolerate hepatitis C treatment now. Five years ago it was extremely difficult to withstand that treatment. I see OB, pediatric and elderly patients, ages nine to 63. Half the patients are men and half women, 65% are black, 10% are Hispanic and the literacy level of 40% of the patients is at a fourth-grade level. I see about 50 to 70 patients a month; I might see the same patient twice if they are new. I also see new patients who are just starting meds, and those with adherence issues: a long-term patient may need salvage therapy, or may need a special drug like an injectable that needs extra support.
I see all hepatitis C patients before they go on meds, and I see all the pregnant women. I sometimes have to see pediatric patients, who are mostly infected from birth, and are by this time very experienced with HIV medications. A majority of children who are infected at birth are over 10 years old, because before the 1990s there wasn't as much information about transmission. Now we have fewer and fewer children getting infected, but back then a baby would be put on meds as soon as they were able to access them. There is a whole different set of conflicts with children, and they oftentimes miss a dose.
Is there any demographic group with numbers rising faster than the others?
Among African-American women and men the numbers infected have been rising. There are a lot of people everywhere who are positive and don't know it, which puts everyone they are sexually active with at risk. With our patients, part of our role when we see a patient is to reinforce safe sexual practices.
What is the biggest challenge facing people living with HIV?
The limited access to medications and medical care. The medications are an integral part of their care, and there is a technician in every clinic I oversee who, once they decide what meds they want a patient to be on, I try and get those medications. Trying to get meds for my patients is a big challenge. We used to have the longest waiting list in the country for medications, over 600 patients. I value helping our patients' complete care by getting all the patients access to medications. These patients are at the very bottom economic level and don't have a way to get meds. About a year and a half ago, the Associated Press ran an article on three patients who died while on the AIDS Drug Assistance Program (ADAP) waiting list in West Virginia. The Federal government responded by giving money to get everyone on a waiting list on meds; we were able to alleviate a majority of our waiting list because of these monies. Now that we have a state and a Federal ADAP, we are in the process of changing our system: instead of getting a reimbursement, we are going to buy our drugs up front more cheaply and get our own pharmacy.
How have you been active in HIV care legislation outside of your clinic?
I am on the ADAP AIDS Care Unit Advisory Council of North Carolina. I go up to Raleigh to meet with the council. We are an advisory council to the people who distribute the state Ryan White funds. Everyone on the council has been nominated and we make recommendations to the state about where the money should go. There have been problems, as the ADAP funds are flat-funded, so the states that have growing numbers of infected residents can't apply for any more money. We have been having to deal with increased patients without any ability to ask for more funds. Our state in particular was underestimated.
What is your daily routine like?
I answer voice mail from patients or colleagues; see patients, counseling them one-on-one; refill prescriptions; and whatever else is needed in terms of the practices and procedures I've established for the clinics. I usually go back and do voice mail more than once. I work on the grants for various needs and the ADAP funding, and work with the physicians about special problems. I don't work in a pharmacy, but we are expanding, so I will work in one. I don't write prescriptions, but based on what decision the physician makes I will make suggestions regarding what I think the physician should provide. I always give them sufficient background for my reasoning. I make sure that the physicians know what is going on with the patients that I follow.
Is there anything special you try to do for people living with HIV when they come to pick up their medications?
The primary special thing we do is assessment of access to medications and helping our uninsured indigent population to achieve access to life-saving antiretroviral medications. We also provide education, counseling, adherence support and review of safe sex practices at every visit and all providers refer new patients and patients failing their current therapy to me. Most of our patients are below a high school reading level, so I have to explain things to them so they will understand. When patients come in I want them to know what their levels are, and WHY it is important to know the information. It is hard to make the right choices when you are ignorant of the options, and when it finally clicks with some patients, they get very upset that no one told them the information before. It may not have been that they weren't told, but they just weren't ready to listen. HIV medication isn't a simple issue, so I try to take the time to translate complex medical terms into simple explanations. I have found this job is more about listening to patients -- not everyone can take a red and green M & M, some patients may need a blue or the green ones might make them ill. If you don't take the time to put them on something they can tolerate, then you might be setting them up to fail with adherence. They are going to have to take these meds for the rest of their life. They won't continue to take the drugs if they aren't responding to them -- beyond their T-cell count, we need to listen to them to give them proper help.
Patients have lots of issues in their lives that affect their ability to focus on their meds. I had a patient whom I told: If they ever invent a pill that works without having to swallow it, I will let them know. I think sometimes you have to figure out what the priorities are for the individual patient, so you can work around those problems so the patient is able to focus on their health care. There are socioeconomic problems everywhere, but sometimes you have to just let them make their own decisions, you can't force people to adhere. It is not always access that is the main problem -- some patients can get the medicine, but they just aren't taking it. It could be depression, which has a horrible effect on adherence. There is denial -- you've got this disease, but if you don't feel bad or look bad or aren't in a hospital, you may not feel that medications are a priority, and that creates a barrier between me and the patient. I sit them down and try to explain to them the benefits of the drugs, and that they have a plan and a reason for everything. I take the time to listen to the patients, and make an effort to explain to them the importance of their medications.
I may only see 10 patients in a day and the physician may have to see 18, so I get a bit more time with the patient to understand them a little better. It's nice that we have a large enough team of caretakers so that we can take care of some of the more personalized issues, and in effect serve the patients better. We have certain scales that help people deal with HIV adherence -- there are some details that you just don't want to miss. The scales are questionnaires meant to detect depression, and the patient and I talk about the results together. This is a subjective disease in people, and some people don't profess to be depressed. It's just a part of the screening process to help deal with the adherence issue. Some patients have to fill the questionnaire out every time they see me, because we are doing medications that are know to lead to depression, and we don't want to miss it. Other patients, who are on antidepression medications, must take the test because we are looking to see an improvement in them. We want to treat their depression and other problems, so they will be better able to take the meds. A majority of our patients have a T-cell count below 200 and are in need of treatment to prevent illness. In those cases we begin their treatment for depression and HIV. The only time we ever try to delay meds is when we encounter an active substance abuser.
What is the best thing about your job?
Working with people/patients one on one on a daily basis and working as a team with the physicians and nurses and case managers to improve patient outcomes.
What is the worst thing about your job?
Not being able to help everyone and seeing patients make the wrong choices in lifestyle and, most of all, seeing patients struggle to navigate the healthcare system in order to access needed medical care. The government has followed the advice of large organizations representing medications, physicians and insurance companies. In the beginning, medical professionals were worried about the government telling them how to practice medicine. Now they stand by and let the government ignore a crisis and let insurance management businesses direct how they administer health care, and patients suffer for this. For those uninsured, there are tremendous barriers and obstacles placed in their path to ensure they are "truly eligible" for the assistance so badly needed, and many are not able to navigate the complex system.
What kind of community do you live and work in?
We live in Greenville, North Carolina, a southern town in a rural area. This is a pretty rural southeast community. We have a few people who have relocated here from New York -- they have the perspective of what can be done. The stigma here is still very real, but I think it is getting better and hopefully will continue to improve over time. North Carolina has 100 counties and 33 counties of people come to Greenville for health care. We have a university and a hospital that both bring people into the city. That helps to provide better services. We have people who drive three hours to get here and then we have over 50,000 in Greenville. The university has kept people coming in, and has stopped it from dying down to one or two stoplights. We have a smaller town atmosphere, but not really a tiny town. Everyone is very nice with good neighbors, and everyone is friendly. A lot of the patients will come in any time just to chat. Some of the clinics I visit outside of town are even smaller, where they don't have much besides a 50-bed hospital.
Does your community contribute to helping fight against HIV transmission?
In our state, over 50% of new diagnoses of HIV cases in the year 2004 were among people of African-American descent, but our state isn't 50% African American. If everyone was afforded the same opportunities and abilities and access to care we would not see the disparities that we have. In North Carolina you are six times more likely to have diabetes, hypertension and AIDS (not HIV) if you are African American. This is a sign that this community is getting later health care, that there is something that isn't being provided to that community. It's one thing to recognize a health-care issue, but as a political issue it looks like care is selectively provided. I don't feel like the government provides for those who cannot provide for themselves. If you don't give them the help, then they will be unable to get back on their feet.
The Black Church Week of Prayer and Healing for HIV and AIDS is an effort by our community to stop this negative statistic. We will have a community panel meeting at a church in each of the neighborhoods to get the message out into the community. They have other activities that are focused on the HIV-infected individuals: support groups and talks, educational talks, prayer meetings. There was a walk -- people living with HIV and AIDS walked around the community and answered any questions. The churches play a large role in the social view of issues, HIV testing, for instance. Some churches are very involved because people are dying from something that is preventable. More of them are coming forward to make a stand, but there are a lot of other churches that are unwilling to come forward on any kind of controversial issue. We try to work with those that are involved even if they don't want to face it, because this can effect anybody. The case managers who are here have really tried to draw the community in and make our community a progressive example. Some people don't want anything to do with it, but others are very enthusiastic.
When did you decide on pharmacy school?
Right after high school -- I went to Campbell University in Buies Creek, North Carolina, about 11 miles from my parents' home.
What do you think is the biggest risk factor for HIV?
Unprotected sex is our number one reported risk factor. Substance abuse, though it may not be a reportable risk factor, contributes to an untold number of HIV transmissions due to risky behavior while under the influence of substances or as a bartering tool to obtain substances.
What do you think are the biggest problems people with HIV face today?
First, access to medications for persons who are uninsured or UNDERinsured, as is often the case in our Southern rural area dealing with the fastest growing rates of HIV in the country.
Second, understanding that patients have to make their own decisions about care when they are presented with a noncurable life-threatening disease.
Third, patients cannot get help as you would prefer them to, due to lack of ability to access health care in general, and sometimes lack of resources and sometimes other priorities, such as food and housing, present everyday challenges and prevent them from being able to focus on health care. Like a North Carolina M.D. once said, "I feel like I care about my patients more than they care about themselves," which is really not the case, but it feels that way when we cannot see or understand what patients may be facing on a daily basis.
People who have a support system of others who know their situation will do better over the long term, because they aren't trying to hold everything in. We recommend that anyone who has a support person that they depend on that they come to the clinic with them for their appointments. Especially for my adherence medication talks -- I think it reinforces the point that you can't miss any doses and that it has to be everyday. A support person is important because they can act as a reminder to the patient.
What is the most important thing you have learned from people living with HIV?
Every day I see something that surprises me. I have learned that ALL people are special and unique and have a purpose for being on this earth. That ANYONE can impart love and caring to others despite their own circumstances. And finally, that the strength of the human spirit is an amazing miracle we can see every day if we just look for it ...
How do you maintain a positive outlook and avoid burning out?
I work with wonderful physicians and nurses and support staff every day that are supportive and understanding. We help support and energize each other when times are tough. Also, we have good treatment for HIV now and this has made the chances of successful treatment so much better that we can look at successes and remember those. There are many difficult things that occur in patients' lives and many difficult situations presented in clinic but I believe I am in this job for a reason and so I am going to stick with it and look for the good.
If you weren't a pharmacist, what would your profession be?
Most likely, some other type of healthcare worker. I know I would want to be providing care and helping others.
Would you like to dedicate this award to anyone?
I definitely have to dedicate this award to the Infectious Diseases Staff at the Brody School of Medicine in Greenville, North Carolina, because the "team" is why the program exists and the support is phenomenal for my position within the department.
Where did you grow up?
Benson, North Carolina.
What did you want to be when you were a kid?
A veterinarian or a surgeon.
Who have been the most influential people in your life, professionally and personally?
My husband, Sim Jones. He is extremely supportive and very focused and artistic. Also Dr. Jeffrey Engel; he is the physician who recognized the importance of a pharmacy contribution to infectious diseases, and supported me in many ways, including writing the grant to support my position financially.
When you are able to get some spare time, what are your hobbies?
My family and reading.
Do you have a partner? Children? Pets?
My husband, Sim Jones, and I have two children, Gabriel and Aleksandra. We have one bearded dragon, two uromastyx lizards, two cats and two dogs.
If you could live anywhere (besides where you live now) where would you locate yourself?
What kind of music do you listen to? Is there an album you listen to most?
I really like all kinds of music, but listen to softer rock.