Lewis grew up in a tumultuous era. The National Organization for Women was founded in 1966, the year she graduated from high school. She received a B.A. in education from George Washington University (GWU) a year after the Stonewall riots. That year, 1970, also saw publication of the ground-breaking Our Bodies, Ourselves. Inspired by these cultural shifts, she went to work managing the Washington Free Clinic and in 1975 entered the Howard University Physician Assistant Program.
In 1979 Lewis co-founded a lesbian health program at the Whitman-Walker Clinic on Seventeenth and Q Streets, a nascent gay neighborhood. Over the next two decades, while working in the Howard emergency room and later in the GWU AIDS Clinical Trials Unit, Lewis volunteered at Whitman-Walker. In 2000, attracted by the ever more diverse clientele and challenges at the clinic, she went full-time, responsible for diagnosis, treatment and management of patients with HIV/AIDS and related conditions. She also serves in the non-HIV Well Woman Gynecology Clinic (Lesbian Services), the HIV Gynecology Clinic and Transgender Clinic. "Barbara changed my outlook on life and made me realize I can live well with HIV," one patient says. "I always walk away knowing she cares." Another who nominated her said, ""She knows her stuff, she listens and she cares."
Today Whitman-Walker stands on Fourteenth Street NW between R and S Streets. Once a poor area, it's now an up-and-coming, ethnically mixed neighborhood. In the early 1980s, Lewis saw mostly gay white men. Later, it was mostly African Americans. Now she has more native African patients, and her staff includes immigrants from Botswana and Zambia. "We're learning a lot about African cultures," Lewis says, "because AIDS in Africa is big in the news. People at our clinic have relationships with Africans. And Africans working at the clinic are learning to accept gays, lesbians and transgendered people." Lewis illustrates this learning curve by telling of doing a pelvic exam on a transgendered patient, assisted by a newly hired staff member of African descent.
As a physician assistant, what do you do that is different then a nurse practitioner or a M.D.?
Physician assistants and nurse practitioners are mid-level practitioners that are trained to diagnose and treat like M.D.s. I carry a case load of 400 patients that I exclusively see, but I have a supervising physician who reviews my charts on a regular basis.
How long have you been practicing?
I became interested in medicine during the feminist wave of the late 1960s and early '70s. At the Washington Free Clinic, we started a women's health night in which we encouraged our clients and ourselves to become empowered to take control of our bodies. It was that interest in women's health that inspired me to go to physician assistant school, in 1975. In 1979, I was part of a group that started a volunteer-staffed Lesbian Health Clinic as part of Whitman-Walker Clinic.
How has your practice changed since you started?
My first job was in an emergency room at Howard University Hospital. Howard predominately served and was staffed by African Americans and other minorities. I was definitely a minority as a white lesbian. I worked there for 12 years, which I believe gave me a valuable perspective on cultural diversity and competency. I then moved into AIDS Clinical Trials at George Washington University, in 1989 when AZT (Retrovir) was the only drug to treat HIV, and then came to Whitman-Walker Clinic in 2000 as a full-time staff member working as a provider in both HIV/AIDS and the Lesbian Health Clinic.
What's the best thing about your job?
The best thing about my job is that I get to be an out lesbian in an institution that serves and is staffed by a lesbian, gay, bisexual and transgendered (LGBT) and heterosexual population that is also racially and ethnically diverse.
Tell me about the Whitman-Walker Clinic:
It's one of the largest AIDS organizations in the United States with four medical sites. It was started in 1973 to provide health care services to the gay, lesbian, bisexual and transgendered community. They have comprehensive outpatient medical services, including legal, mental health, dental care and case management services. They also do HIV prevention and education and provide HIV testing and counseling.
What's the worst thing about your job?
Patients not always having adequate insurance, if any at all. So it's a struggle to always get them the services they need.
What percentage of your patients are on Medicaid? ADAP?
Ninety percent are on either of those programs.
What have been your greatest successes in your work?
The interactions I've had with patients, getting their trust and seeing their health improve. Providing culturally competent care, particularly to transgenders and lesbians.
What do you think is the biggest problem people with HIV face today?
Still discrimination, and lack of access to care and treatment, particularly in Africa and Asia.
For the most part, what do you think is the biggest risk factor for HIV?
The biggest risk factor for HIV is denial about being susceptible to infection, and for women not standing up for themselves when it comes to their partners not wanting to use condoms. This is particularly a problem in Latin and other cultures where women are afraid of being rejected, or worse, if they don't submit to their male partners.
Do you think that current prevention efforts are sufficient?
Prevention efforts by our government are dismal. How can you prevent a sexually transmitted disease if you can't talk about sex openly, particularly in the schools?
What do you provide for a patient who is about to begin treatment?
I see patients after they have already been through testing and counseling. But at their first medical appointment with me, I spend time listening to their concerns and assure them that HIV is not a death sentence, and that they can lead a long and possibly healthy life if they are willing to take charge of their health. I explain that starting meds is a big step and may have its ups and downs, but that they need to work closely with me to find the right regimen that will work and that will enable them to carry on the quality of life that they are entitled to. I get the sense that they appreciate my interest in them and their care, and for the most part they are ready to participate.
How do you feel about patients who take a proactive role in their own treatment?
I'm very happy when they take a proactive role. Usually they do an Internet search on an HIV website, and it generates a lot of good discussion. Most of my patients do not have access to the Internet, though, or the ability to do any kind of research. The news media, however, sometimes causes problems when they report on new developments that are not ready or even close to use, and give a patient false hope for a cure.
What is the most important or useful thing you have learned from your patients?
I've learned how to listen and be more compassionate. I've learned to respect different people's lifestyles and understanding of the world. I believe it's made me a better person.
How do you maintain a positive outlook and avoid burning out?
I'm actually energized by my work. I love being able to help my patients and give them a good experience when they attend the clinic.
In general, can you describe how your ability to treat people with HIV has changed over the years? Do you feel people walking into the clinic today feel less stigmatized by the disease?
I think there is less stigma nowadays and certainly the gay community has had a lot of support. With the changing populations affected by HIV, more of my heterosexual clients are finding that their relatives are supportive. The clients in my clinic that have the least support are my African clients who rarely tell their relatives. There is a lot of fear and stigma. My clients from Ethiopia are particularly afraid. They really don't want other Ethiopians to see them in the clinic. They don't want anyone Ethiopian to know they are infected. I think most of the Africans were infected back in Africa. Most of them are here without families, so they are most in need of support.
Are you seeing more women in your clinic lately? From which community?
This began more than five years ago and I haven't seen a change lately. The women mostly come from the African or African-American community.
What percentage of your clinic are immigrants.
Five percent and they are mostly Africans. We've also been seeing an eight percent Latino/Latina population, mostly from Central America.
Since you have worked in HIV from 1989, can you describe your experience in the initial years? How did you handle having so many patients that you had nothing to offer in terms of treatment?
In my early years, I actually worked coordinating clinical trials at George Washington University. Basically in those years, people were desperately trying to get into studies. Those years were difficult, because of all the deaths. For example, I had three studies at the time with 60 patients on a combination of didanosine (ddI, Videx,) and zidovudine (AZT, Retrovir) and 20 died over a two-year period. In contrast now, I have 400 patients and maybe two of them will die in a year and these are mostly people who enter treatment late.
Can you tell me about your transgendered patients. Do they have particular adherence issues, treatment issues, etc? What are the challenges, if any, of treating this population?
The transgender population is the most stigmatized and discriminated against. I see both male to females (MTF), and female to males (FTM). In my HIV clinic, I follow about 15 trans women (MTF). Because of the complicated issues with gender dysphoria, such as insurance coverage, and social acceptance, we have programs to help, such as mental health and specialty clinics, that deal with the transgendered populations' total health, including hormones. I think they are a very vulnerable population when it comes to HIV, but my patients are pretty adherent to their regimens. However, protease inhibitors can effect estrogen levels, so we will use prolactin levels to monitor and keep our patients healthy!
What are the issues that come out in working with the transgendered community?
The first thing you have to do is to win their trust. I have to convince them that I am looking out for their best interests, that I support who they want to be as a transgendered person. The biggest challenge I find that I have is to convince them that more estrogen is not necessarily better. I just want to protect their health. We do things that are really important, like monitoring their prolactin level to see if their estrogen level is too high.
Where did you grow up?
What did you want to be when you were a kid?
History teacher or golf pro.
What kind of work do/did your parents do?
Housewife and liquor salesman for Seagram's.
What made you decide to go into HIV care?
I was already involved in lesbian health, but was so moved by what was happening to my gay brothers with HIV in the early '80s.
What do you do in your spare time?
Play golf, attend a Jewish lesbian support group that's been together for 21 years and love country and western dancing.
Do you have a partner? Kids? Pets?
I am single, but I have a shaggy dog named Twiggy.
What's the biggest adventure you ever had?
Played golf in the Gay Games in Australia!
What kind of music do you like to listen to?
I have eclectic musical tastes, but I mostly listen to Barbra Streisand, Black Eyed Peas, Madonna, Wynonna and Mary Chapin Carpenter.
What book would you say has had the most impact on you?
The books I read in the late '60s, early '70s: Kate Millet's Sexual Politics and The Autobiography of Malcolm X. I would also add And The Band Played On by Randy Shilts in the early '90s.