Title:Staying Positive

Two longtime Georgetown HIV+ patients share their stories of survival

Like an unassuming wave gaining strength under the ocean’s surface, HIV, or human immunodeficiency virus, crept in and swept thousands off their feet in the 1980s and 90s. The three-letter disease rattled the normalcy of lives, shortened life expectancies, and unearthed a stark divide that pushed diagnosed people to the most isolated margins. Nearly as important as HIV medical treatment for patients’ vitality and quality of life was the level of empathetic care and community offered as they navigated the epidemic. With the courage and guidance of Georgetown’s medical community, coupled with major advances in treatment, two patients were able to reclaim their lives, become advocates for those living with the virus, and work to eradicate “the lonely disease.”

Expanding horizons

At one point, reaching the age of 50 seemed unfathomable to Marcia Brown. For decades, she sequestered her diagnosis from loved ones and existed within the boundaries of the HIV community, privately contending with the disease. But the diagnosis was neither the first nor the last hurdle in her life’s journey.

Raised in northern Virginia among seven siblings, Brown’s academic gifts and the love of her family and teachers catapulted her into a world of opportunities.

In the mid-1960s, she attended her junior and senior years of high school in Hanover, New Hampshire, as part of the burgeoning A Better Chance (ABC) program, which placed young people of color in high-performing schools to cultivate their academic merit. Living next to Dartmouth College gave Brown a window into campus activism, particularly Black student activism in the U.S. and around Nigeria’s Biafran War, which ignited her interest in African diasporic connections and international affairs.

Over the next decade, Brown was accepted to Stanford University, took a hiatus from school to participate in activism back in Virginia and give birth to a daughter, and later returned to complete her English degree. Inspired by a year-long study abroad experience in Kenya during her junior year, she continued at Stanford to earn a graduate degree in international development education.

She then joined the United States Agency for International Development (USAID), working in Washington, D.C., and throughout the African continent. When her mentor offered her a two-year assignment in Zambia, Brown enthusiastically accepted. However, as she and her daughter were getting settled in the country, Brown found herself in the thick of the nation’s first exposure to HIV and AIDS.

“Entire families were being wiped out,” she recalls, thinking back about how many close friends she lost to the newfound disease. “It was a very frightening and sad time for everybody. That was my first time hearing about HIV.”

Then, in 1987, while living happily and in a loving relationship, she received the news that she never could have fully prepared for: she was HIV-positive.

A Search for Care

After the diagnosis and the end of her work contract, Brown and her daughter returned home, where she began adjusting to a new way of living—stealthy and cautious.

“At the time, my brother and father were both very ill, so that gave me more reason to withhold my status. I kept it underground, and I really didn’t know what to do,” she says. She focused her energy into raising her daughter and continuing her work in international development.

When it came time to seek HIV care, Brown initially forwent the limited treatment options being offered by physicians, and turned to complementary care which included alternative and natural medicine. However, as her health began to deteriorate, she soon realized that she needed to seek other forms of care.

“I met with one doctor, a white male physician, and it was very clear that he was only accustomed to having gay white males as his patients, so it just wasn’t a good fit for me,” she remembers.

As a heterosexual Black woman in the late 1980s, Brown felt that she was an anomaly in the pool of patients with the infectious disease, knowing no other women who were HIV+. Physicians struggled to keep up with the curve. According to the CDC, between 1988 and 1990, African Americans were being diagnosed with more new HIV cases than white people for the first time since the epidemic emerged in 1981. Two years later, HIV became the second leading cause of death for Black women ages 25-44.

“It was a miracle that my body was able to keep going. For a very long time, I was walking around with little immunity,” she adds.

With the turn of the decade approaching, Brown sought advice from the few friends she decided to reveal her status to, in hopes of finding more emotional support and more inclusive health care.

Strange Awakening

Around this same time, Richard Strange, an IT professional who enjoyed keeping up with the latest medical science research, began educating others about the infectious disease.

“I first heard about the virus when news reports appeared in the early 1980s,” recollects Strange, who grew up in London but settled in D.C.

“Before it was known as HIV, it was called GRID, or gay-related immune deficiency. But then after a few years, scientists saw that the disease was impacting a wider community.”

Outside of multiple cases among gay men, new HIV diagnoses were being reported by hemophiliacs, people who injected drugs, and those of Haitian background, causing a sweeping stigma among the populations. After reading extensively about the disease, Strange shared the latest HIV research and emerging knowledge about transmission with others he knew.

“I thought I was well-informed and I knew what was regarded as risky behavior. I avoided that, and told everyone to get tested yearly,” says Strange.

“I assumed that because I was following all the rules, I couldn’t get infected. But I realized that if I was telling others to get tested, I should too. So in December 1992, I walked into the Whitman Walker Clinic in Northwest D.C. to finally get tested.”

Age 51 at the time, Strange was certain that his results would come back negative, but to his surprise, he learned that had contracted the infectious disease he had warned so many friends and colleagues about.

“To this day, I don’t know exactly how I got infected, but I couldn’t argue with the data. I knew I had to act quickly,” he says.

Strange turned to Georgetown University after he confided in a close friend, who was a doctor.

“I called him up and said, ‘I can’t believe it, but I’ve just tested positive. What would you do?’” he recalls. “And he said, ‘Well, if I was in your position, I would want to be treated by Dr. Princy Kumar.’” Just days after reaching out to her, Strange was in Kumar’s office as a new patient. “She’s been a wonderful doctor and friend ever since.”

Destined to Serve

If you ask her, Princy Kumar, MD (R’90), was destined to work in the service of others. From following her calling to be a physician, to advocating for those battling infectious diseases, Kumar’s tireless work and commitment to her patients has made her a game changer in the field of HIV and AIDS research and compassionate health care.

Growing up with eight other siblings, the Georgetown doctor remembers her father’s lessons on being self-sufficient and giving unto others.

“Seven of us are doctors in different specialties. It was my father’s vision, who told us that as a physician, your profession is not work. It is a service to the community. Its reach in impacting the community is beyond that of any other profession.”

As a medical student, Kumar was intrigued with microbiology and learning that most infections have a definite treatment which leads to cure. Her understanding of the field was tested as AIDS became an epidemic.

“HIV was a completely different paradigm. We were in the dark much like the public—we didn’t know what caused it, how to treat it, or how to prevent it from spreading. However, this reinforced my father’s perception of being a physician—why medicine is a calling and why it is important to step out of our comfort zones to help the affected community.”

Landing at Georgetown as an infectious disease fellow in the midst of the AIDS crisis in 1988, Kumar encountered the shocking reality of how the epidemic was affecting thousands of people.

“There was no treatment for HIV at the time. Patients had no hope,” she recalls. “Many of them were stigmatized, and I believe I was called to take care of them.”

Kumar’s predecessor at Georgetown—Phillip Pierce, MD (M’75, R’80)—led the charge to provide comprehensive care to HIV-positive patients on Thursday nights.

“We called it the Thursday Night Clinic. We had like-minded specialists who really wanted to be of service.” However, Kumar admits she and Pierce were met with much resistance from fellow physicians who did not want patients with HIV in close proximity to their patients.

“There was an immense lack of knowledge about HIV during this time, so we really had to struggle to provide the necessary care for our patients,” she says. Fear rooted in misconception was a major factor in why the Infectious Disease Division was eventually moved from the main hospital building.

Besides providing medical care, the young doctor saw that patients needed something more to combat HIV.

“It was really difficult to see how young, previously healthy people were devastated by this disease, and most of all the shame that they felt from having it,” Kumar says. “People didn’t want to be associated with anybody who had anything to do with HIV. It was truly a lonely disease.”

Trials and Community

In the early 90s, after a lengthy search for better medical care, Marcia Brown was recommended to Mary Young, MD (R’87, W’89), a colleague of Kumar and fellow Georgetown physician who was developing the Women’s Interagency HIV Study (WIHS), an NIH-funded cohort study devoted to helping women impacted by HIV.

“They provided a safe space for us. We felt loved and respected there, and they provided excellent and compassionate clinical care,” Brown shares.

A growing community of patients living with HIV led to a stronger need for support, advocacy, and engagement. Georgetown responded to this call by creating the NIH AIDS Clinical Trials Group (ACTG).

Given Brown’s display of leadership and diagnosis management, Kumar turned to her to help revitalize the District’s ACTG Community Advisory Board. Over the years that fol- lowed, Brown began to serve on other advisory boards, includ- ing the George Washington University’s Center for AIDS Research Board as chair and community coordinator.

Many people with HIV visited the National Institutes of Health to participate in clinical trials of new treatment options for HIV and AIDS. For Brown, the experience of finding a drug to improve her health was bleak.

“Going up to NIH’s huge campus in Bethesda, I felt very much alone,” she says. “It was overwhelming, and still, no one in my family knew my status. I had to come up with reasons why I was leaving the house so early in the morning and trekking to Maryland.”

Though NIH’s pioneering research drew people from across the country, Brown remembers never seeing other Black women or even people of color at the clinical trials. Participating in numerous studies, she felt at times that she was losing the battle to AIDS; she later had a second devastating diagnosis, learning that she was also battling cancer. But the tides changed for Brown after participating in one clinical trial and receiving the good news from Young that for the first time, her HIV was undetectable.

As for Strange, he believed clinical trials were essential to make progress, and his philosophy on participation was “If not me, then who?” With the counsel of Kumar, he began participating in trials almost immediately after being diagnosed. At that time, the primary FDA-approved drug treatment was Retrovir, or AZT, which required as many as six dosage intakes a day.

From Surviving to Thriving

After volunteering for five new drug trials at NIH between 1993 and 1998, Strange discovered that his immune system seemed to be genetically in his favor and might be able to withstand the virus with few drugs or none at all. In 1999, he joined a multi-year study of how a small portion of patients could control the virus without drugs.

“For a year and a half, I took no drugs at all and the virus was either undetectable or only came back at a fairly low level,” he says. Now, at the age of 78, Strange’s current viral load is undetectable.

“In many places, there’s a great stigma around being gay, let along having HIV,” says Strange. “Even though people are somewhat more accepting here now, the fear of stigma keeps people from disclosing their status. But, I also realized that as an HIV-positive person, I have a responsibility not to infect others.”

Considering how his health status could affect his relationships and even beloved hobbies like hiking, Strange decided in 1993 to share his HIV diagnosis with his closest friends.

“My friends and I enjoy being outdoors, and I said to them, ‘I’ve got something I need to tell you. I just tested HIV-positive, which means that in any of our outside activities, if I ever get cut, you have to let people know to be very careful.’”

Now, more than 25 years since his diagnosis, Strange continues to be a proponent for medical advancement in HIV research despite being aged out of eligibility for many trials.

“If we’re going to make progress, we should all play our part in furthering scientific knowledge and getting more effective diagnoses and treatments,” he asserts. He has served a total of 12 years as a volunteer member of the community advisory boards for two NIH-funded HIV research studies.

After nearly four decades of HIV research and care, there are still gaps in understanding the virus as well as prevention methods and medications.

“Even with the progress we’ve made, the social aspects of the disease can be very ostracizing,” says Kumar. “The hard part is whether patients remain engaged in care. It’s not so much about access, but about other factors in their lives. Are they willing and able to take the medication? Are they still distrustful of the system?”

For Brown, addressing the needs and rights of HIV-positive patients and advocating for strong researcher-community relationships are paramount. Having overcome two earth-shattering health diagnoses, she remembers what it was like to feel alone and overlooked at certain points of her journey. But now at almost 70, she stands tall—as a mother, grandmother, friend, advocate, survivor, and thriver—with a legacy that she can be proud of.

“There’s nothing else that I have on a bucket list. Everything else would be icing on the cake from here,” says Brown. “What I really hope to see is the next generation benefit from all of the good things that life has to offer, while also feeling their worth, value, and power in all of their relationships.”