But what happened to Donna Futterman before age 30 may have informed her career in HIV/AIDS as much as the training that came at 30 and afterwards.
Her father exported textiles and often took his family with him on overseas trips. His daughter, who already wanted to be a doctor, got a preview of life in some of the developing countries that would one day struggle with HIV.
As a teenager, Futterman came out as a lesbian. She entered Barnard College in 1970, and was active in the antiwar, women's rights and civil rights movements. Today, when she speaks bluntly and compassionately about what HIV and AIDS have done to youth, you still hear, loud and clear, the committed, confident voice of an activist. You hear the voice of one who lived through and even helped to create some of the greatest social changes our country has known. (Futterman also has an activist's entertaining, informative and consciousness-raising fluency!)
Futterman was back in school in 1979 taking pre-med courses, and in 1981, she entered the Albert Einstein College of Medicine in the Bronx. She chose pediatrics as a specialty, and in 1985 became a resident in the Social Pediatrics Residency Program at Einstein's Montefiore Medical Center.
Meanwhile, many in the gay community -- including some who had marched beside Futterman in the 1970s -- were dying or had died of AIDS-related causes. The treatment of pediatric AIDS became a natural way to meld medicine and children, two causes that were a part of Futterman's heart. She, by now, had a child of her own, Evan, born in 1985, to her partner, Virginia Casper, and her.
Today, Futterman is a Professor of Clinical Pediatrics and the Director of the Adolescent AIDS Program at Einstein and an Associate Attending in the Department of Pediatrics at Montefiore. She has served on 35 government and national medical society and research committees and with 15 community service organizations. In 1996, POZ magazine named her one of the 50 Most Innovative U.S. AIDS Researchers, and The Advocate in 1999 called her one of "Our Best and Brightest Activists" in the health category. Recently, she was selected as a consultant to the Centers for Disease Control and Prevention's (CDC) Global AIDS Project, and she has been intensely involved in the Mothers-to-mothers-to-be program, a mentorship program for HIV-infected pregnant women based in Cape Town, South Africa.
How long have you been practicing?
I have been a practicing pediatrician since 1987 and began a fellowship in Infectious Diseases/Immunology/AIDS that year. I began at the Adolescent AIDS Program in 1989.
How has your practice changed since you started?
When I started working in HIV, we had just begun using AZT(Retrovir). There were great delays in getting the meds in liquid formulations for children. In 1989, when I began working exclusively with adolescents, our major role was trying to prevent opportunistic infections with pneumocystis carinii pneumonia prophylaxis, treat intercurrent infections and provide the best support for patients who were dying.
Now we have gone from bearing witness and providing support to being able to have an incredible medical impact. Although many of the challenges of HIV treatment remain relatively the same today -- coping with diagnosis, disclosure to parents and partners, encouraging safer sex and trying to persuade teens who feel relatively well that meds with side effects are really helping them.
Now that fewer children are being infected, do you have time to do other things?
Since my patients are adolescents, we have more and more. The CDC estimates that half of new infections are in youth and few of them know they are infected. (A national study of young men who had sex with men in the 1990s found that 80 percent of those who were HIV positive didn't know it!) We spend a lot of time trying to figure out the best way to do case findings as well as comprehensive care.
But I have been doing other things as well. Since 2001, I have been working on several HIV projects in South Africa. I am working as a consultant with the Global AIDS Program at CDC and providing technical assistance to two youth clinics in South Africa located in townships where the HIV prevalence is 25 percent. I am also working there with an NGO [non-governmental organization] that is providing support to newly diagnosed HIV-positive pregnant women. I recently got an National Institutes of Health grant to develop a systematic support program for these women that can be adapted and disseminated throughout South Africa.
What's the best thing about your job?
Probably three things: the people I work with (my team), the young people and the opportunity to do innovative, impactful work. We have had the opportunity to launch social marketing campaigns promoting HIV testing to youth as well as to develop innovative materials for youth, incorporating lifestyle issues with prevention messaging.
What's the worst thing about your job?
Dealing with pettiness.
On a more global level, it is frustrating that we continue to pursue approaches in HIV that no longer make sense. One of the most salient for me has been the continued dogma that HIV counseling and testing must be a 45-minute affair, a position that has contributed to leaving so many people undiagnosed. From a public health perspective, it is long past the time to routinize and normalize HIV testing within the medical system.
What have been your greatest successes and failures in your work?
My greatest success has been helping to put the issue on the table that adolescents actually have HIV and are not just targets for prevention. I think I have helped build a program with a national and international reputation for excellence. We have also shared what we have learned by producing user-friendly materials for providers and youth.
My biggest failure has been my inability to convince many in the "youth-serving" community, especially in New York, of the urgency of helping youth know their HIV status, so those who are positive can get care. There are many who believe that I have too aggressively promoted testing, especially to vulnerable street youth, while I believe that these youth and gay youth are the most vulnerable to HIV and that if we don't reach out to them, who will?
What is the biggest challenge you face as a clinician?
I think the biggest challenge is finding truly effective ways to help youth sustain adherence over time. Also, we have not yet been successful enough in helping HIV-positive young people reduce their risk behaviors -- especially in terms of partner disclosure and having safer sex.
What do you think is the biggest problem children and adolescents with HIV face?
Learning to live a full life and embrace the challenge of meeting their life goals while knowing HIV is lurking in their bodies. Also, as we are more successful clinically, there is a growing danger of complacency and funding cutbacks that can limit our knowledge gains and needed services. The resurgence of multi-drug resistant tuberculosis in the early 1990s and recurrence of sexually transmitted infections should be a cautionary tale.
For the most part, what do you think is the biggest risk factor for HIV?
Sex. Everyone wants it, safe sex isn't that easy or fun and is only intermittently spoken of. How many TV shows, videos or movies show sexy sex scenes with condoms or safer sex?
Do you think that prevention efforts in the United States have been sufficient?
They are not sufficient. Every five years comes a new generation and they need to hear the prevention messages with as much passion as the previous generations. How can we expect people to change such a powerful behavior -- sex -- without a societal commitment to change? Does anyone on the planet not know what Coca Cola is? Yet they market their product with million-dollar campaigns each year for just a few points of market share, while we do virtually nothing to market prevention.
What changes would you like to see in HIV care?
Have Medicare pay for care if you are HIV-positive, not just when you have AIDS. Share resources nationally so HIV meds are available to all no matter what state you live in.
What do you provide in terms of education or counsel for a patient who is just diagnosed?
Crisis management and comfort for the new diagnosis and encouragement for living with HIV for many years. Also, I tell them about the services offered and encourage them to figure out who in their life will best give support.
What do you provide in terms of education or counsel for a patient who is about to begin treatment?
First, make sure they are ready and see the meds as their ally in the fight against the virus. Provide information about the meds, side effects, viral growth and resistance. Work with them to choose a regimen and devise a plan to support adherence. Sometimes start with a practice regimen with vitamins to see when they forget.
What's the key to a great healthcare provider/patient relationship?
Trust. For the patient, seeing their provider as an ally in their lifelong struggle with HIV and someone they can be honest with. Doctors must be honest about what they know and don't know, as well as willing to provide their opinions to the patient.
How do you feel about patients who take a proactive role in their own treatment?
Sadly, not enough adolescents are truly empowered patients. It is always helpful when they do reading on their own and talk to others, but it is important to realize that each individual is different and what works for someone else might not work for you.
Who was your all-time favorite patient and why?
One of my first patients in the early 1990s was a young man named Eddie. He encapsulated so much about the challenges of working with adolescents and was so spectacular as a person. As a young Hispanic guy, he was thrown out of his house for being gay. He was infected during the years he spent on the streets. Despite obvious risk factors, no one in the gay community told him to be tested, and he found out he was positive when he was diagnosed with pneumocystis carinii pneumonia, which is when I met him. At that point, he had already begun getting his life together. He was living in a youth shelter and elected president of the floor and he was also participating in a youth theater troupe. He was a passionate and committed young man who desired to live above all else. He became more immersed in his art and used his limited time to dig deeper into his artistic self. He wanted to live so badly. As he advanced to dying, he asked us to do whatever we could to save his life: "Cut off my leg if you have to." At the end he reconciled with his family and was a very successful artist. He did not publicly disclose his HIV/AIDS, which I both understood and was saddened by, since both he and his story were so powerful, he would have had a tremendous impact. He was very open to discussing his life, dreams and disappointments. Sadly he lived at the wrong time; a few years later and he probably would still be alive. I keep his memory alive with a street sign on my desk that says, "Eddie Avenue."
What is the most important thing you have learned from your patients?
To be humble. You can never really be certain about a clinical course. People I was sure were dying, lived for longer than expected. And, of course, the young people's passion and will to live is mental, spiritual as well as physical. It is so hard for a young body to die.
How do you maintain a positive outlook and avoid burning out?
Sense of humor and good support from family and colleagues. Also, the blessing of doing work that always feels meaningful and mission-driven.
If you weren't a clinician, what would you be?
Maybe a rabbi or spiritual advisor or public health person or politician. So many of the changes needed are on a vast social level and although politics is so difficult and unrewarding, I think I would want to be in that fight.
THE BODY'S HIV LEADERSHIP AWARD
Who would you dedicate this award to if you could?
The youth of the Bronx and Cape Town.
We'd like our readers to get a sense of you as more than just a clinician. Could you share a little personal information about yourself?
I am a 52-year-old woman who started medical school at age 30. Before that I was a political activist in the anti-Vietnam War movement as well as women's and civil rights movements. I came out as a teenager and have been in a wonderful relationship with Virginia Casper, Ph.D., my life partner, for the past 28 years. We have a terrific son, Evan Casper-Futterman who is now 19 years old and in college. Our family was the first successful case for second mother adoption in New York State. Jamie Marks (founder of The Body) was the main pro-bono lawyer for the ACLU in our case.
Where did you grow up?
What did you want to be when you were a kid?
A doctor. But during my political activism days, I thought becoming a doctor was "selling out" by having such a high status profession. So I worked as a taxi driver, secretary and vocational teacher before starting pre-med studies.
What kind of work did your parents do?
My father was an exporter of textiles, and he traveled the world. I was extremely lucky in that he took the family with him on many trips to the developing world. I grew up early with a deep sense of internationalism. My mother was a fashion model and then a real estate agent. Although I can tell when something is fashionable and tasteful, to look at me you would not think I was my mother's fashion daughter!
What about college?
I majored in American studies and minored in the anti-war movement (or the other way around) at Barnard College in New York City. Years after graduating college, I decided that I wanted my work life to be more integrated with my political passions and felt I was ready for the challenge of medical school. At age 30, I went to Albert Einstein College of Medicine in the Bronx where I met many other "older" students as well as students with a commitment to understanding the socio-economic roots of many health problems.
What made you decide to go into HIV care?
The HIV epidemic began while I was in medical school. I first became aware of it in 1982, because it was affecting my community -- the gay community. By the time I decided to become a pediatrician in 1985, it was clear that HIV also affected children, and thus, I would be able to both work in the field I loved (pediatrics) as well as be engaged in the epidemic of our time.
Who were the most influential people in your life, both professionally and personally?
The most important person in my life has been my life partner, Virginia Casper. Together we have supported each other and shared the most important things in our lives: love, conceiving and raising our son, Evan, pursuing our training and careers (me as a doctor, her as a developmental psychologist and educator) and traveling and working in Africa. My son has been a source of endless pride and joy, and my parents have shown me the world and been both a great support and through some hard years of my independence seeking, a strong and ultimately rewarding focus of struggle.
Professionally, several doctors stand out: Gerald Friedland, an infectious diseases doctor at Montefiore while I was in medical school, who said that HIV would be with us for the rest of our professional lives. Saundra Shepherd, my mentor in pediatric training who taught that it was never enough to just write a prescription unless you knew how the patient would fill it. James Oleske, who trained me in HIV medicine and who said that our patients can't afford for us to burn out. And finally Karen Hein, who founded the Adolescent AIDS Program on a foundation of care, research, outreach and training -- a model we follow to this day. More recently, Mitch Besser, an obstetrician working in South Africa, has taught me by example the profound yet simple lesson of generosity -- we all only gain by sharing our knowledge and contacts with each other.
It is so hard for me to answer this question as writing this has unleashed a flood of memories and images of so many people who have made such a difference to me personally and in this epidemic. Knowing them (colleagues and patients) has been one of the deepest rewards of doing this work.
What do you do in your spare time?
Sadly, as yet this is a relatively undeveloped part of my soul. I love reading the newspaper cover to cover and novels when I get the chance. Hanging out with family and friends is also wonderful. Traveling and meeting new people and learning local culture and history are also quite energizing for me.
Do you have a pet?
Our dog is no longer alive. We had a very handsome Malamute named Anna Day (I'll love you forever and a day). She lived for 13 years.
Where do you live? What kind of community is it?
I live on the Upper West Side in Manhattan near Columbia University. It is both a great neighborhood with stores for real people as well as an energetic community given all the students and bookstores and restaurants. I lived in both Brooklyn and the Bronx for 10 years each, but I think this neighborhood suits my temperament the best. The only thing apartment living lacks for me is a DRIVEWAY!
If you were to live someplace else, where would you live?
Cape Town, South Africa.
What's the best vacation you ever had?
Our family took a six-month sabbatical in Cape Town four years ago. While it wasn't a vacation, it was a fantastic time for our family. We had dinner together almost every night (now we are lucky if it is once a week). We lived in a challenging, vibrant world that was grappling with a huge HIV epidemic just six years after the first democratic election and the formal end of apartheid. We met wonderful new friends, saw stars we had never seen in the southern hemisphere, went on safari and saw animals surviving as they had for centuries, lived in a spectacularly beautiful city and had the opportunity to process together all of the experiences we had.
What book would you say has had the most impact on you?
Probably The Plague by Camus. It so captured the threat and challenge of dealing with HIV as more than just a disease. I also like to read humor, and a cartoonist from South Africa named Zapiro has drawn the current history of South Africa in a way that clearly illuminates the ongoing process of social change and reconciliation.
What kind of music do you like to listen to? What album do you listen to the most?
Rhythm and blues are my favorite, with Aretha topping the list. Right now Alicia Keyes and the Ray Charles duets album get the most play.
Before you were nominated did you know about The Body or The Body Pro? If so, what were your impressions?
Very impressive and accessible information. I love both the Web site and the e-mail reminders!