As it happened, Janice had brought HIV medications with her to the conference, just in case she came across a person who might be in need of them. Needless to say, Agnes became a thankful recipient. Even after she returned home to the Unites States, Janice sent Agnes money, so the woman could afford the cost of her treatment. Although Janice tries to downplay this astonishing act of compassion, it's hard to ignore just how rare it is in a world where action is so often buried under mountains of paperwork and bureaucratic stagnation. With Janice's help, Agnes remained healthy long enough for a Ugandan government program to kick in and begin supplying her with free medications. Agnes is now an international speaker on HIV-related issues, and has met with global leaders to advocate for treatment access in the developing world.
What's even more incredible is that none of this -- the help she gave to a women with HIV in Africa, or even the fact that she attended the International AIDS Conference at all -- is anywhere in Janice's job description. A registered nurse for 33 years, she is the HIV research program coordinator at the Swedish Medical Center in Seattle, one of the top hospitals in the region. In addition to managing clinical trials, Janice also helps care for the patients who volunteer for her studies, many of whom are poor and have no private health insurance. In fact, it's one of those patients who first nominated her for an HIV Leadership Award.
A talented writer, world traveler, dogged researcher and dedicated, down-to-earth healthcare worker -- she keeps her beeper on 24 hours a day, seven days a week if any of her patients need to reach her -- to read Janice's story is to understand what it means to be a beacon of hope and inspiration at the front lines of the war against HIV.
How has your life changed since you started in nursing?
When I first started as a nurse, I worked in the intensive care unit of a university hospital -- a job I kept for 15 years. It was fast-paced and very demanding, and it not only gave me skills and knowledge but also confidence in myself and my decision-making abilities. When I started I was a shy young woman from the South, living for the first time in a big city. I don't think anyone would call me shy now! Hmmm, I guess they wouldn't call me young either.
After that I worked as the nursing director of a free medical clinic in Greenville, South Carolina. I discovered I liked primary care much more than intensive care work. It was here that I realized the awful inequities in the health care available in the United States and what it means to individuals whose access is limited. The person living on a dollar a day should have the same standard of care delivered with the same amount of dignity and respect as the person with a six-figure income. It was the beginnings of activism for me.
I started in clinical HIV research about 10 years ago and discovered that the job went hand in hand with activism and advocacy. An HIV researcher who only collects data is not even doing half of what the role demands. For example, we have been after the drug companies to loosen up their policies -- they don't understand what it is like to be down to the last option or dollar. There are certain criteria to get into our studies, but we aren't as concerned about the studies as we are about making treatment options available to our patients. (They aren't really my patients, as I don't provide their care for them. I just deal with the study part of their management. For some of them, though, it is their only care.)
What's your patient demographic?
My patients are mostly gay males, mostly white, although not 100% of either. I encourage minorities and women [to enter clinical trials], both for their own sake and because we need to know if the treatments being studied will be safe and effective for them. The only way we'll ever find out is to have them include themselves in clinical trials. But the demography of HIV infection in Seattle includes mostly men who have sex with men, so those people are the majority of my study volunteers. Sadly, the proportion of minorities and women is growing. It is still nowhere near the number seen on the East Coast, however.
Each person is different, and all are a pleasure to work with, even the challenging ones. I've had people come in who are heavily into crystal and get themselves clean -- a feat I'm in awe of. (If breaking an addiction is anything like dieting, it must be hell.) This is stuff they do on their own, but I like to think the support we give in our program (all two of us) helps them keep it together. Some sort of become activists themselves, and some of them just quietly do what they have to do to make the best of their lives. Each of them inspire me and teach me life lessons I never otherwise would have had a chance to learn.
How does HIV care in Seattle differ from care in other parts of the country?
As far as regional advantages for HIV-positive people in Seattle, Washington state has an excellent early access program, and in Seattle, there are some excellent and devoted case managers. (The ones I mostly know are with LifeLong AIDS Alliance.)
A disadvantage of the area is that world-class AIDS care is concentrated mostly in the cities, with less abundant options for people living in rural areas or on the Olympic Peninsula. A few of my [clinical trial] volunteers drive up to a couple of hours to get here for their study visits, and I've had volunteers come from as far away as Southern Oregon. One woman flew in from Alaska.
Receiving HIV treatment via research offers a lot of advantages: the medications are usually free, as are the lab tests and physical exams. The patient education is usually more thorough and ongoing, also. And, not the least consideration, it offers confidentiality to the point of anonymity. For someone who doesn't want their co-workers or company to know of their HIV status, this is an obvious plus. The people who enroll in a given study must, however, meet the criteria as written into the protocol. Depending on what's being studied, that can range from people who are new to treatment, new to HIV or very experienced with both.
What do you consider to be the best part of your job?
The best part of my job is, of course, working with the study volunteers. Many of them have just been diagnosed with HIV and are starting therapy for the first time on a research trial. They're shocked, scared and sure they are pure poison -- that they'll never have another close relationship. With education, support and encouragement, they finish the trial confident, knowledgeable about their disease and its treatment, and usually at least dating again.
What is the worst part of your job?
This one's easy -- the metric tons of regulatory paperwork that goes with conducting a clinical research trial. When I fly in and out of the SeaTac airport [Seattle-Tacoma International Airport], I have a bird's-eye view of the logging clear-cuts [areas with all their trees removed] in the forests around Mt. Rainier. I'm positive it takes all the trees in one clear-cut to make enough paper to satisfy the U.S. Food and Drug Administration regulatory requirements for each study we do.
Do you ever feel that you have failed?
My failures involve not being able to help a person past their initial fear and self-stigma to get to the point where they believe that they still have a real life to live ahead of them. I've had one or two people withdraw from treatment studies and from any type of emotional support because they haven't been able to work through this big life hurdle of HIV. I've lost track of them, and I can only hope that they were eventually able to find the support they needed.
What is your biggest challenge?
By far the biggest challenge is burnout, and I think a majority of nurses would agree with me. The amount of need is overwhelming, and the challenge is to stay focused on one person at a time, the person in front of you with his or her unique problems and challenges. If you look at the long line of people still waiting for help, the tendency is to throw up your hands and say, "What's the use?"
How do you avoid burnout and successfully juggle your workloads?
I've become very, very good over the years in compartmentalizing the different areas of my life. When I leave work, I really try to leave it in the office, and I usually succeed. Going to theater, concerts, dance and art exhibitions keeps my life balanced. I also indulge myself with my free time; I jealously guard my free time to use in a way that pleases me.
As for juggling workloads, I always think if I were more organized, I could accomplish something. As it is, I'm just trying to keep all the balls in the air, however inelegantly. My personal life has gotten away from me a bit. As with all things worth doing, it takes time and attention. Maybe in a couple of months.... Thank goodness I'm a naturally quiet sort of person. It doesn't take a lot to entertain me.
What change would you like to see in HIV care?
The one change I'd like to see is to make HIV care available to everyone who needs it. This would result in, I hope, a lot of healthier, happier, more productive people. There are a lot of people that the state ADAP (AIDS Drug Assistance Program) can't help, because the drugs are too expensive for a year, so people are required to wait. Ninety percent of the people in the world with HIV have no access to care. Some countries have a 40 percent rate of HIV infection. Solving the problems requires prevention efforts and education, but what we really need is a vaccine. The several in trial have not proven to give much protection because the virus mutates so quickly.
When you first begin to counsel your new study volunteers, have they already received any kind of support?
All people who are tested for HIV receive the mandatory CDC [U.S. Centers for Disease Control and Prevention]-type counseling. This can be brief if testing is done at a facility or doctor's office that doesn't have a high volume of requests. But at most of the testing facilities in our city, the counselors are experienced and thoughtful. Still, people who find out they are positive are shell-shocked. They're in the worst state possible to be learning new information. So I have the responsibility and the luxury to be able to reinforce and expand upon the original counseling during the entire length of the study -- which can go on for two years or more.
What education or counsel do you provide for newly diagnosed patients?
I usually start with just being there, letting them know support is available, that a good life is quite possible for them. I tell them that they won't remember much of what I say right this minute, but that we'll talk about it again. Anything more in that first session depends on the verbal and non-verbal feedback I get. The true luxury of working in a relatively small research program is that I can devote a lot of time to each individual and see them as often as necessary. I am also on 24/7 call for them if they have questions or need to talk. If all this seems out of the ordinary, please remember that I'm not the person who does the testing and the counseling that goes with it.
What education or counsel do you provide for patients who are about to begin treatment?
A lot of the information I provide is required by the human subjects ethics committee as part of an informed consent for a research study. I make sure they have a basic understanding of what HIV is and what being positive means in a physiological sense, what the antiretroviral medications are and, basically, how they work, why close to 100 percent adherence is important, and some ways of achieving that.
We discuss the specific drugs they will start, their side effects and how to manage them. I tell them that these drugs aren't cures, they don't mean they will not be able to pass HIV on to someone else and they may not work. I tell them about food and medication restrictions, if there are any, with their particular treatment. I also tell them that HIV is one disease where knowledge is truly power. Then every study visit, which can be once a week or even more often in the beginning, I reinforce this information and make sure they understand it. I also provide them all this information in writing.
If you are living with HIV, or were infected with HIV, at what T-cell count would you begin treatment?
We're talking just about me here, but I would consider treatment at a T-cell count between 350 and 500, even though that's too high, really. It's mostly because of the anxiety factor. I'd want to start something with a lot of data behind it, something I'd have to take no more than twice a day and with or without food, and had side effects I could tolerate.
What's the key to a great healthcare provider/patient relationship?
Honest communication, mutual respect and courtesy. It is also important for there to be a willingness to work together in a partnership for the patient's benefit.
How do you feel about patients who take a proactive role in their treatment?
I encourage people to take a proactive role in their health care. Most of my patients do that already, but if they don't, I try to set them on that road. They find a health care provider they trust and get along with, they make it a point to learn about the disease, the available treatments and what is coming down the pike. They know that drug therapy is only one part of treatment and they actively look for other ways to take care of their health. By doing this, they give themselves as much power and control as it is possible for a person to have over their destiny. People who do this always, always seem to do better.
What is the most important thing you have learned from your patients?
Don't ever give up.
What do you see as the biggest risk factor for HIV?
The biggest problem, especially for women, is the lack of power. The personal power to dictate their sexual activities with a partner and protection of their choosing, the economic power that doesn't force them choose between not eating today or putting themselves at risk for HIV by selling sex. The other big problem is the "just this once" factor. Like, if I don't use a condom "just this once," I won't get infected; or if I don't clean my works [needle injection equipment] "just this once," nothing will happen. Of course, it only takes once, as any of us who were sexually active before the advent of birth control pills knows.
Do you think the HIV prevention efforts you see are effective?
I think most prevention efforts and harm reduction programs are very effective, but they're not enough. I don't know what is enough, or I'd be bouncing the message off satellites into every community on earth. If I could change what was going on now, it would be to take politics out of prevention: ditch abstinence-only programs and provide clean needles and condoms to everyone who needs them, with zero debate on the morality of "encouraging sin."
If you weren't a nurse what would you be doing?
I love to write, have a hair-trigger sense of outrage and enjoy sticking my nose in other people's business. I guess I'd be a journalist. My role model here is Laurie Garrett of Newsday, who wrote The Coming Plague and Betrayal of Trust. If I could just be even half as good ...
Where did you grow up?
My dad was in the Navy so I sort of lived everywhere -- Guam, the Philippines, California, Georgia, Maine -- it's a long list. But my parents were born and raised in the foothills of eastern Tennessee, and they took a little bit of that culture with them wherever we went.
What did you want to be when you were a child?
Loved. Seriously, I wanted to be everything from a nun to an astronaut. When I was eight, I read every Isaac Asimov book I could get my hands on, and my hero was Lucky Starr, Space Ranger.
Tell us a bit about your parents.
My mother was a mother and housewife, which wasn't easy. She went from a small town to being a military officer's wife and she did it well. My father was a naval officer, and, during a long career, he was a helicopter pilot as well as the executive officer of an aircraft carrier and a couple of land bases.
When did you decide on nursing school?
I probably in my junior or senior year of high school. It was important to me at the time to be in a profession that would allow independence. There weren't as many career opportunities open to women as there are now, but I have no regrets about making the choice I did.
Who have been the most influential people in your life, professionally and personally?
Besides the obvious choices, like my parents, I'd have to choose Peter Shalit and Agnes Nyamayarwo. Dr. Shalit is the medical director and principal investigator for the HIV research program at Swedish Medical Center. He's kind, patient, thoughtful and a great teacher. I've learned from him almost everything I know about HIV and patient management. More important, I have learned what it means to treat every patient as a unique individual, respectfully and with dignity. He walks the walk like he invented it. As far as I know, he may have.
As for Agnes, she's more inspiring to me than anyone else I have ever had the honor to know. I met her at the Durban AIDS conference -- a middle-aged, HIV-positive woman from rural Uganda who didn't know she was positive until her husband died of AIDS-related causes and her son was diagnosed with it. She not only managed on her own, she raised six of her eight children (one died of AIDS and one ran off when he found out his mother was HIV positive). When I met her she was with The AIDS Service Organization in Kampala and failing in health. I gave her the antiretrovirals and antifungals I had hand-carried with me to the conference, and re-supplied her via tourists who were willing to hand-carry drugs into Uganda as well as by sending her money in the mail. Eventually, she got her drugs through a government program. She bloomed! Her health improved and she became an eloquent spokesperson for the need to make treatment available to everyone. She's spoken at numerous conferences, talked with President Bush when he toured Africa, and even -- to my everlasting delight -- toured middle America with Bono. All she did was quietly tell her story, and there wasn't a dry eye in the house. She continues to work with TASO [The AIDS Support Organization, Uganda's largest non-governmental group providing HIV services]. There are hundreds of women like Agnes in Africa, and I am in awe of them all.
Hold on a moment -- how did you end up at this conference with antiretrovirals in your pocket?
I first went to Africa as a tourist. I was returning as a tourist when someone pointed out to me that the International AIDS Conference in Durban would be going on at about the same time. I got into the conference with a press pass from Health and Development Networks, a fantastic NGO [non-governmental organization] that fosters structured Internet discussions about critical topics concerning HIV and also covers many conferences. I had been listening in on many of their Internet discussion lists, and knew of the problem Africans had in obtaining treatment. The government had apparently even forbid the public hospitals to give nevirapine for mother-to-child transmission prevention.
With the help of a very committed individual in the business, I obtained some nevirapine (Viramune) to take with me. I threw in some other ARVs [antiretrovirals] and some fluconazole (Diflucan, an antifungal medication), which was wickedly expensive. It was a crap shoot, basically, because I didn't know if I could find anyone who could make good use of them or not. Luckily, I did. Costa Gazi, a South African public sector doc gladly took the nevirapine, and Agnes took the rest.
Via tourists (I'd like to protect names, including the name of the company that helped me find them) I got her more fluconazole, but it was easier to send her money for the ARVs. It wasn't as much of a sacrifice as it sounds -- even back then I could supply her for a whole year for what one month of therapy costs in the U.S. Since then, the price has gotten even lower in Africa, thanks to generics. (Generics which are now endangered by the new patent laws passed in India in response to the WTO [World Trade Organization] mandate.) Anyway, after a year and a half, she e-mailed me not to send her any more money, because the outgoing U.S. ambassador had given her enough to treat herself for a full year. After that, she got on a government program. Needless to say, the trip to Durban was a real eye-opener for me.
What sort of other work do you do in the developing world?
My "work" in the developing world is not official, and can't even be classified as work. Mostly it involves staying informed, bearing witness and trying to make as many people [in the United States] as possible aware of the enormity of the problem -- trying to make them understand how their lifestyle and political choices affect people a half a world away. I try to cultivate a sense of outrage and convey that individuals can make a difference in turning the tide of poverty and disease in the world. This is tiny potatoes, especially compared to the activists who put their lives on the line daily in service to this cause. Little things make a difference. For instance, with the help of someone who was putting out an Internet-based African poetry newsletter, I sponsored a poetry contest for African girls. The submissions were really quite touching, and I hope the modest amount of money they received will give them a sense of accomplishment as well as help with school fees, food, or even a new dress. Maybe especially a new dress.
When you are able to get some spare time, what are your hobbies?
I read, read, read. I do some photography and hand-color black and white photos. Mostly I write; poetry, essays, articles for local weeklies. Right now I'm writing a romance novel and I'm having a grand time. It's so much fun to be able to create a whole world with a few keystrokes and make your characters do whatever you want them to! Maybe it's world domination in miniature ...
Where do you live? What kind of community is it?
I've lived in Seattle for about eight or nine years, and I consider it paradise. The traffic sucks but otherwise it's perfect. There's something about living between two mountain ranges and next to the sea that soothes my psyche. The town is friendly, politically left, with tons of bookstores, small presses, little theaters, artists, galleries. I live in the Capitol Hill neighborhood, which allows me to walk to work and to walk downtown.
If you could live anywhere else, where would it be?
Ireland. Don't ask me why -- I've never even been there. Something about the idea of Ireland really appeals to me. My whole family is Welsh. A lot of it looks like here from what I've seen in photographs, with coves and bays. It looks like a fun place to explore.
What the best vacation you've ever had?
I've had great vacations in Europe and Cuba and the Middle East and Africa. Maybe the "best" best was Iran about three years ago. A long-time friend was going back to visit his parents and invited me to go. We spent a week and a half traveling around the country and it knocked my socks off. The people are incredibly friendly with a tradition of a very high level of hospitality.
What's the biggest adventure you ever had?
That would be gorilla trekking in Uganda. In the company of trackers and four other tourists, I spent several hours watching a family of mountain gorillas. We were supposed to keep several feet away from them so they didn't get any human illness, but it was impossible to keep the youngsters from walking up to us and satisfying their curiosity. What a thrill!
What are you currently reading?
I read anything and everything -- romance, suspense, thrillers, "literary" books and poetry; I love poetry. My favorite authors are Barbara Kingsolver and Diane Ackerman. Right now I'm reading A Problem from Hell by Samantha Power -- big, but gripping.
Is there a book that has had a big impact on you?
I would say it's Philip Gourevitch's Tomorrow We Wish to Inform You We Will Be Killed with Our Families about the Rwandan genocide. Another influential book was Laurie Garret's Betrayal of Trust.
What kind of music do you listen to?
Mostly world music. I like African and Cuban the best. When I'm in a contemplative mood, I listen to Loreena McKennett, but I like Angelique Kidjo, Gaetano Veloso, Afro-Cuban, traditional Flamenco music (admittedly an acquired taste) and classical. Fado, Cesara Evora and Etta James, Beau Soleil and ... I'm not very discriminating, am I? Just keep me away from the likes of Britney Spears.
Is there anyone who you would like to dedicate this award to?
Oh yes ... and yes ... and yes. But I think I'll just dedicate it to all those living with HIV who also help others manage while doing the best they can for themselves. It's a tough business, but there are lots of people who do it with grace and even humor.