What Maggie wanted was nursing school. After graduation, she returned to Houston, but by the early 1980s, Houston was booming and she wanted out of the city. She loved the solace of open spaces, and going camping, hiking and skiing. She took out a map of the U.S. and saw that Salt Lake City was in the middle of all that. So she went to Utah.
The AIDS epidemic was growing, so professionally, Maggie wanted to help those with HIV. She became a physician assistant and went to work with the only doctor in the state of Utah treating people with AIDS. Today the University of Utah Hospital is a destination for many African refugees who have fled persecution in Togo, Sudan, Somalia, Congo, Sierra Leone, Namibia and Ethiopia. African immigration to Utah took place mostly before September 11, 2001. Since then, according to Maggie, "We have only had a few."
"Caring, compassionate, and very knowledgeable," one patient says. "Maggie has a positive attitude and goes out of her way to help all people." Apparently, the little girl who was told she could do anything she wanted ended up in the right place. "My colleagues say I'm nuts for the hours and the passion I have for HIV," Maggie says. "But I like to think of it as giving back to society and to the community. I've been very lucky to have been so successful in my life. It's the least I can do to say thanks."
How long have you been practicing?
I currently work with Kristen Ries, M.D., at the University of Utah School of Medicine, Division of Infectious Diseases (ID). We just celebrated our tenth year at the University Hospital and Clinics, working in outpatient Infectious Diseases Clinic 1A. Dr. Ries is the Clinical Medical Director. I provide care for people with HIV. We work with one other full-time clinical doctor-physician assistant team (Dr. Harry Rosado and Dana Smith, P.A.-C.), and several part-time clinic/research phsyicians. We are all involved in teaching, community service and prevention in the HIV field in the Rocky Mountain Region.
In the early 1980s, I was a registered nurse working at Holy Cross Hospital in Salt Lake City. It was the beginning of the HIV epidemic in a very conservative culture. Here, as in most areas, HIV was feared and carried a great stigma. About 1986 or 1987, Utah started seeing a need for help caring for people with HIV. A 10-bed HIV inpatient unit (Med III) was opened at Holy Cross Hospital in 1987. People were sick and survival times were short. All of the patients with HIV in Utah and surrounding rural areas were referred to Dr. Ries. Few if any other physicians would care for them in Utah. Dr. Ries approached me one day at work on Med III and asked if I would consider going to Physician Assistant school and then coming to work with her. That was 1988. I started the Utah Physician Assistant Program that October and graduated in 1990. I've been on the HIV front line full time since 1987-88. Holy Cross Hospital was a great support to people with HIV. In the days before Ryan White funding, few people had insurance. The Sisters of the Holy Cross were not only very caring but very charitable. In 1994 the Holy Cross Hospital was sold to a for-profit organization, and we lost the care and the support of the Sisters. The University of Utah School of Medicine Division of Infectious Diseases invited us to join them. In October 1994, Dr. Ries and I brought 500 patients with HIV to the University of Utah Clinic 1A.
Is there anything particularly challenging or different about working in AIDS care in a place that is largely Mormon?
Utah is predominantly of the faith of the Church of the Latter Day Saints (often called LDS or Mormons). Salt Lake City is growing and the diversity is growing. The culture is conservative, very Republican. No more conservative than some of the southern U.S., such as the Bible Belt. Utah won't allow clean needle exchange programs, but it does not require a prescription to buy syringes with needles. The conservative nature is quite challenging, although it has its bright spots.
Orrin Hatch has done some good things for HIV/AIDS such as the Ryan White CARE Act. There are several homeless shelters in Utah and they receive support from the Mormons. The folks in Utah (like other states) are beginning to be aware about diversity, HIV and the people who have it.
Do you care for any Mormons?
Many of my patients were born in Utah and are Mormons. The Mormon people believe in family (in the traditional sense). Most children are encouraged to marry and have children. The men graduate from high school and serve a mission for the church to share the teachings of the church. The men's mission is two years. Once that is done, they return, marry and go to college or seek their careers. Sometimes people do not realize they are gay until after marriage. There was a documentary about a family Dr. Ries cared for that was shown on PBS called the "Smith Family". It's a touching story about a man who was married, had a dual life and brought HIV home to his wife. It's a story of how one family lived and loved and worked through the pain.
Why did you originally go to Utah? Was your first job there working with people with HIV?
It was 1982. I was born and raised in Houston, Texas. Too big, too redneck, too busy of a city, with an attitude....I opened a map of the U.S. I remember as I looked at the map, that I did not want to go east of the Mississippi. I like the outdoors and open country.
Salt Lake City seemed to be in the middle of the West with all directions to explore. I knew nothing about the culture until I moved and lived in Salt Lake City for a while. I have no regrets. My Daddy always said, "You can learn a lot about how other people live".
How many patients do you see on an average day?
I work half days in the clinic seeing an average of 8-10 patients a day. The other part of my day revolves around clinic medical records management/supervision, CQI, statistics management for our Ryan White Title III grant and outreach clinic management serving approximately 40 patients in St. George (300 miles south of Salt Lake City). The St. George clinic is every two months. We transport all our equipment, vaccines and charts; driving down on Thursday, seeing patients on Friday and driving back on Saturday.
How has your practice changed since you started?
The course of HIV care has made a great evolution. In the early years, with little or no antiretrovirals, our focus in HIV care was on "helping people die" -- providing comfort and helping people to get their lives in order before death. A very intense journey. On average, people survived six to 18 months after diagnosis. Today, HIV care has become a complex specialty. With at least 20 antiretrovirals and HAART (Highly Active Antiretroviral Therapy) available, people with HIV can survive and thrive. The side effects are another chapter.
In the early years, people with HIV were mostly educated gay white men. The gays of San Francisco and other large cities changed that with education and prevention. We saw HIV rates among gay white men go down. Today, the HIV population has changed to people of color, women and intravenous drug users. Now we are beginning to see more methamphetamine users. Utah recently held the title of the meth capital of the USA. Our HIV population remains predominantly men who have sex with men, but the rates of people of color have increased. Most of our patients are considered to be marginalized.
What's the best thing about your job?
For me, it's not really a job, it's more of a passion. The best thing is the people with HIV themselves, knowing their life stories and learning the lessons they have taught me. I have learned what is important in life -- and what is not -- from them. Every patient has shared something of him- or herself with me. It is this intimacy with their lives that has changed mine. I feel very lucky to have walked and to continue walking beside them in their journey.
What's the worst thing about your job?
The worst things are the long hours, studying to keep up with new knowledge and the disheartenment of knowing that the HIV epidemic is not over ... that it is actually going in the other direction. I see too many new cases. The newly infected (the third wave, I call them) didn't see the early years of death and suffering. They didn't live with the fear that HIV = death. They didn't see what education and prevention did to reduce new infections. Today's youth tell me that there are pills for HIV, that people can live with HIV, and so it's no big deal.
What is the biggest challenge you face?
The biggest challenge is keeping up with the rapid availability of new knowledge in the HIV arena.
What do you think is the biggest problem people with HIV face?
The high price of health care is a major one. Without funding, there is no optimal care.
For the most part, what do you think is the biggest risk factor for HIV?
Personality styles. The unstable extrovert, impulsivity, living in the moment without being able to plan ahead, seeking immediate gratification -- all of which lead to risky sexual and injecting behavior. And some pregnant women aren't aware of their risk for HIV and how it leads to risk to their infant.
Do you think that the prevention efforts are sufficient?
I adamantly believe that our prevention efforts are not sufficient. In reality, I'm not sure they can be changed quickly. I do not agree with our puritan ways of dealing with sex and HIV. I believe that abstinence works for a few, but not for the majority. Our society should know that we are humans, and that sex is a normal human function. We should normalize sex and make it "no big deal." Then maybe we could get somewhere in preventing transmission. Spending a lot of money on abstinence education will not prevent the majority of infections. Joycelyn Elders lost her job as the Surgeon General because she tried to normalize masturbation. We are a society that is afraid to admit our sexuality.
What change would you most like to see in HIV care?
Short of a cure, I would like to see equal care for everyone with HIV (not to mention equal care for everyone, period). This could only be done by increased HIV funding or by some sort of national, one-payer health care plan.
What education or counsel do you provide to newly diagnosed patients?
The usual medical part: H&P, educational material, access to Clinic 1A staff (case managers) who in turn provide access to community resources, eligibility for funding, housing and substance abuse rehab; we also provide access to the Clinic 1A HIV Pharmacist, to an HIV psychiatrist, an OB-GYN and a neurologist. I usually spend an hour with each newly diagnosed patient. I try to make our clinic a safe place for them and to assure them that we will do our very best for them. I use gentle touch and lots of hugs as part of my HIV care. So many newly diagnosed patients feel dirty; I want to show them that they are not. HIV does not equal death; but the meds are not a walk in the park. The patients are the ones in control; I am their consultant. My job is to educate them about healthly lifestyles, secondary prevention, harm reduction, HAART initiation guidelines, when to start meds and opportunistic infections. I offer them access to the learning of new life skills.
What about patients who are about to begin treatment?
I want to know what the patient feels about treatment and about taking pills. I want to know their health belief model, how they might cope with side effects and whether or not they can make a committment to HAART. Some believe HAART is great; others think it's poison.
If you were infected with HIV today, at what CD4 count would you begin treatment?
What treatment regimen would you choose if you had to begin treatment today?
Combivir plus Sustiva, if I wanted to save the protease inhibitors till later; this combination has a good track record. Combivir plus Kaletra, if I wanted a protease inhibitor.
What's the key to a great healthcare provider/patient relationship?
I believe what the great physician William Osler said: "It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has."
Do you have many patients who take a proactive role in their own treatment?
I have some individual patients who know more about HIV and treatment than most general physicians do. It is important for them to be in charge of their care. Often this makes my role easy, but sometimes it makes it more difficult, because it's difficult these days to keep up with all the scientific/medical and patient-related materials. Now-a-days, it's not unusual for patients to have read something that I haven't seen. But they are usually forgiving if I check it out and get back to them. Sometimes patients misunderstand what they read and that requires patient education so they can understand. This process is important to maintain the provider/patient relationship. It's important not to take the patient's control away and to make sure their knowledge is as accurate as it can be.
Tell me about how it is working with African immigrants. What percentage of people who come to your clinic are these immigrants?
We were designated as one of the HIV positive refugee sites in 2000. The refugees are from Ethiopia, Sudan, Togo, Rwanda, Republic of Congo and other countries in African. The refugees are thankful to come to the U.S. to be in a safe place, but it seems to be with trepidation.
Most have survived terrible injustices, torture and rape resulting in post-traumatic syndrome. They do not come trusting authoritarian figures including health care providers. Trust is learned over time. They speak Arabic, French and many African dialects. Not only do they have to learn English and the American culture, but most have not even seen microwaves, and the amenities we take for granted. I have learned a lot from the people from Africa. They seem to learn English a lot faster than I can learn their language. We have seen 30 to 40 refugees. We haven't had many African refugees since September 11, 2001.
There are amazing stories. One refugee woman was proud that she had a job in Park City (35 miles up the canyon from Salt Lake) doing housekeeping. One day, when her ride home didn't show, she walked 35 miles home without a complaint.
As a group, the refugees are used to appointments. They show up the day of the appointment and don't think much about waiting all day to see the provider. It was hard to teach them about being on time for appointments and that they need not wait all day. We were more concerned about them waiting than they were.
Any other immigrants you work with?
I have a Russian immigrant, a couple of Italian immigrants and several undocumented Latin American immigrants. People are much more the same than different, especially when it comes to love and disease. Most people want to be loved, but HIV scares so many people they love away from them. This creates great heartaches. It's a hard journey to walk...
What is the most useful thing you have learned from your patients?
What's important and what's not: To enjoy a sunset; to smell the air at the beginning of a spring rain; to listen to the silence of the snow fall; to appreciate life, and that family and love makes the journey easier.
How do you maintain a positive outlook and avoid burning out?
Do one thing at a time. Don't get overwhelmed. Do the work in a way that makes me proud I did it, no short cuts. I make sure that I have something to look forward to, like weekend trips, driving home a different way, changing my personal routine, staying out of the rut.
If you weren't a clinician what would you be?
If I were younger, I would like to be a fighter pilot and then go on to be an astronaut. That's just my fantasy. The person that I am would not do well killing people; I'd just like to go for the ride. Most likely, if I wasn't a clinician, I'd be a nurse taking care of the underdog.
We'd like our readers to get a sense of you as more than just a clinician. Could you share a little personal information? Where did you grow up?
I grew up in Houston, Texas.
What did you want to be when you were a kid?
I wanted to have a job that would give me financial security. I grew up in a home that expected women to get married and have kids.
Tell us about your parents.
My parents were divorced when I was six. I was their only child. My mother had had two previous children, both older than I. My father received custody of me in an era (1960) when men were rarely granted such things. I was raised by a single father who worked as a machinist. He remarried when I graduated from nursing school.
When did you decide that you'd like to be a physician assistant? What was your major in college?
My college major was nursing. I received my B.S.N. from Texas Woman's University. I received my Physician Assistant Certificate from the University of Utah in 1990, and an M.S.N. in health education from the University of Utah in 1991.
What made you decide to go into HIV care?
Initially, I went into it because people needed care and were not getting it. I was a nurse and I wanted to help.
Who were the most influential people in your life, both professionally and personally?
As a child, it was strong female characters who influenced me, such as Katherine Hepburn and Bette Davis, and strong, justice-minded male characters, such as John Wayne. As I look back, my father was the most influential person in my life. He raised me to believe that "despite being a girl," I could do anything I wanted to.
What do you do in your spare time?
Work. And I have taken some exotic trips, to Hawaii, Madagascar, Antartica and the Galapagos.
Where do you live?
Salt Lake City, Utah. I love Utah and the wide open West.
What's the best vacation you ever had?
They are all the best. I like to see how other people live.
What's the biggest adventure you ever had?
Living to be 51. I never thought that I would live this many years, see so many places and share in so many lives. It's been the best adventure.
What's currently on your bedside table?
The Best Awful by Carrie Fisher, a novel about bipolar illness, and Ordinary Wolves by Seth Kantner, a novel about the Alaskan wilderness.