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Authors: M.D. Damon Tweedy

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Starting my clinical rotations as a second-year student, I'd hoped to see this scientific knowledge in medical practice. But in a succession of multiweek stints through surgery, general medicine, pediatrics, and obstetrics-gynecology, I didn't see a single patient with HIV. Some of this was mere chance, as each medical team saw only a sampling of patients admitted to the hospital, and medical students interacted with fewer still. My experience might have been different had I gone to medical school in New York, Washington, D.C., or San Francisco, where HIV was more prevalent. Yet the adoption of protease inhibitors as treatment for HIV infection spoke to a broader trend. Thanks to their introduction, the illness that brought people to emergency rooms, general medicine floors, and intensive care units a decade earlier had become a chronic disease largely managed in outpatient clinics.

I decided during my third year to spend several weeks shadowing doctors in their outpatient HIV/AIDS clinic. I didn't want medical school to pass by without getting to see up close the clinical view of an illness that had such wide-ranging societal implications. The few dozen patients I saw in the HIV/AIDS clinic fit the profile of AIDS that I'd grown up with: They were all openly gay men; most of them white.

During the first eight months of my medical internship, I'd come across only a handful of people with HIV or full-blown AIDS, and even then only in passing. Once, I'd been called to draw blood overnight from a HIV-positive patient who developed a fever, and on two occasions, I'd rushed to the bedside with other doctors to try and revive men with end-stage AIDS who'd gone into cardiac arrest. George was the first patient whose case allowed me to slowly digest the social impact of the disease from its diagnosis. If the social worker's theory was correct about George's sexual orientation, then he fit the profile of gay black men living in secret. A few weeks later, I would see a similar case, but from a different perspective.

*   *   *

Monica was a twenty-eight-year-old woman from a small town about an hour north of Durham. She'd grown up the way far too many black kids do, raised by a single mom after her dad abandoned the family when she was a toddler. For as long as Monica could recall, her mom spent her days on the cleaning crew at a local hospital. With no support from her ex-husband, she also took on part-time evening and weekend jobs whenever she could. Many of the families in their neighborhood had similar stories.

Monica exceeded the expectations most people had for someone with her background. While her brother dropped out of high school and did a short stint in prison, Monica graduated with honors and never got into trouble. She avoided the teenage pregnancy trap that had befallen her mother and aunts. She went to community college and found a job doing billing at a local medical practice. A few years later, while working full-time, she went back to school at nights and on weekends and completed a bachelor's degree. She wanted to become the office manager of a medical practice, or maybe a hospital administrator. She'd set her sights on helping her mother move out of a small two-bedroom apartment into a comfortable two-story house.

Then disaster struck. During a routine gynecological checkup, her doctor discovered a slightly abnormal Pap smear. She was infected with human papilloma virus, a sexually transmitted infection (STI) identified as the main cause of cervical cancer. Based on this finding, he suggested testing for other STIs, including HIV. Monica scoffed at first. She'd had sex with two men in her life. With the first, a boyfriend in college, they'd always used condoms. She'd been careful with the second boyfriend too, but switched to birth control pills after dating for over a year. That turned out to be a life-altering decision: Monica's test came back HIV-positive.

Looking back, she remembered getting sick the year before and coming down with what she thought was a bad case of the flu. Working in a medical office, she figured that she'd caught the virus from one of the patients. But the symptoms she'd experienced were probably not from the flu; they were most likely from acute HIV infection.

After absorbing the initial shock, Monica responded with the resolve that had gotten her out of the ghetto. She was fully compliant with her HIV medicines, taking more than a dozen pills each day spaced out over morning, afternoon, and evening. She did well for three years. She'd just applied for an administrative job at the local hospital and been invited for an interview when she got sick again. Over the course of a few weeks, a nagging cough wouldn't go away and she lost almost ten pounds. Then one day she started coughing up blood. A chest X-ray at her local emergency room showed a large spot on her lung. She was transferred to Duke, where she was admitted to my team.

I combed through Monica's computerized chart to learn her history before meeting her. Most of the notes were from her hospital admission three years earlier and subsequent appointments in the infectious disease clinic she visited every three months. I caught myself looking for the entry that explained how she'd contracted HIV. Why was I doing that? After this long, it was doubtful that I could tell her anything she didn't already know about how to avoid transmitting HIV to other people. Knowing the source of her infection certainly wasn't going to change anything that we did for her medically. I had to wonder if I was looking for information that would allow me to pass judgment, the same way so many did back in the earliest days of HIV/AIDS, to determine whether an infected person was an innocent victim (someone with hemophilia, for example) or had made poor choices (an IV drug abuser or someone who engaged in high-risk, unprotected sex).

On her initial outpatient clinic note, I found what I'd been searching for. There, an entry stated Monica had gotten HIV from a boyfriend. In my moral calculus, this put her somewhere between blameless and careless. As I approached her room, I felt that I had pried too deeply. There was nothing wrong with knowing how she got HIV, but why attach moral judgments to it? I wondered why this habit was so hard to avoid.

I tapped on the door of her room and entered before she could reply. Anywhere else in life, I would have been appropriately shunned for my rudeness, but among doctors in hospitals and clinics, this was standard practice. The patients, dependent on our services, rarely offered any protest. Still, I felt embarrassed as I saw her reach to close her hospital gown, which was open in the back. I apologized for rushing in as I introduced myself. Her face relaxed.

“Nice to meet you,” she said, her almond-shaped eyes staring up at me.

Her skin had a few dark spots across her forehead, a remnant of teenage acne. She wore braces, like I had a few years before. This tiny detail connected us. We were nearly the same age. In another life, she could have been someone I'd grown up with or someone I worked alongside. Instead, she was a sick woman who might not live to see thirty.

She'd tested negative for tuberculosis at the other hospital. But she kept coughing up blood, although a medicine she'd been given had slowed this down. Our plan was to schedule a lung biopsy to determine whether she might have cancer.

“If I have cancer,” she began, “could that be from having HIV?”

I nodded. Some cancers, such as Kaposi's sarcoma and non-Hodgkin lymphoma, develop as the immune system progressively breaks down. They are among several “AIDS-defining illnesses,” whose presence indicates that a patient has gone from HIV infection to active AIDS. Since the advent of highly active antiretroviral therapy (HAART) in the mid-1990s, the incidence of these AIDS-defining cancers has decreased greatly. Lung cancer is also more common in patients with HIV/AIDS—for reasons that are not fully understood—but its rates have not declined much despite HAART.

Monica started to cry softly. “I just can't believe that I'm going through all of this.”

She told me her story. Her second boyfriend, Larry, had been a drug company representative who'd come to her office marketing a new blood pressure medicine. He had impressed her with his intelligence, charisma, and ambition—he was applying to pharmacy school and eventually wanted to start a chain of pharmacies. Unlike the people she'd grown up around, Larry was a black man who was doing something with his life.

“I thought I knew him,” she said, wiping at her tears.

Standing there in her room, fresh off hunting through her chart for the source of her infection, I could easily have condemned her choices. But I wasn't perfect. While I went through high school, college, and half of medical school without putting myself at any risk, during my third year of medical school I had unprotected sex with a woman that I didn't know very well. I accepted without a thought her claim that she was HIV-negative and took birth control pills. That I came out of the situation unscathed didn't change the fact that I'd been more reckless than Monica had. Clearly, HIV was not simply a matter of morality or assigning blame.

Later that day, I met Monica's mother, Geraldine. I had stopped to collect a blood sample only to find Geraldine, as Monica had gone down to the radiology suite for a CT scan. I tried to slip out, but Geraldine would have none of it. After a brief introduction, she wasted no time grilling me on Monica's care.

“So what's this test for, exactly?” she asked.

I explained to her that the CT scan had been ordered to get a better look at the spot found on the X-ray at the other hospital, and also to see if there were any other spots elsewhere.

We talked about Monica's care for several minutes before the conversation turned personal. “How long have you been married?” she asked, pointing to my wedding band.

“Three months,” I said, smiling as I thought about my recent honeymoon in Jamaica.

“That's great,” she said. “You know, I wish Monica could have met someone like you.”

I had heard this from black mothers before. Usually they were referring to the fact that I was college-educated, a professional-to-be, “someone who had his life together,” in contrast to the familiar narrative of black men “not doing right,” as my mom and grandma liked to say. But Geraldine was speaking on a different, more visceral level: “Monica wouldn't have ended up like this if she'd found a real man.”

I felt a skittish sensation envelop me. “What do you mean?”

Geraldine looked away and stared out the window, frowning in disgust: “Her so-called boyfriend. The one that gave her this … disease. He was a fairy. A faggot.”

I cringed. Words I had once used now sounded like instruments of ignorance and hate. Monica had not given any details about how Larry acquired HIV. Nor did I think it was my place to ask her.

I told Geraldine that I was sorry about what had happened to Monica. There wasn't much else to say. Two days later, the news got even worse: Monica was diagnosed with lung cancer.

Monica was the first woman I took care of with HIV. In the ensuing years, I've seen many more. Women now account for nearly a quarter of all people infected with HIV. The CDC documented the first two cases of AIDS in women in 1983, two years after initial reports of the disease. Both women had acquired HIV through heterosexual sex with intravenous drug users. Foreshadowing the color of the epidemic to come, one of these two women was black and the other was Hispanic. By the late 1980s, blacks accounted for half of all HIV cases in women; most recent estimates place that number at more than 60 percent. In 2010, the rate of new HIV infections for black women was twenty times higher than the rate for white women, and black women accounted for nearly 65 percent of all deaths among women due to HIV/AIDS. Not surprisingly, black children remain far more likely than white children to be diagnosed with HIV.

Many elements account for the higher rates of HIV/AIDS in the black community: poverty and low education, less access to health care, and higher rates of other sexually transmitted diseases. But I left the general medicine service struck by the impact of another factor, sexual dishonesty. Not only had George and Larry been unfaithful to their female partners, but, perhaps, they hadn't been truthful to themselves either. As I grappled with their stories, I reflected on the role that homophobia, particularly within the black community, may have played in their actions.

*   *   *

One morning when I was six years old, I was waiting at my neighborhood bus stop when a boy my age who lived at the other end of the street came up to me. “Are you a fag?” he asked. At that age, I had no idea what that meant. Judging from the smile on his face, however, and the teasing stares of some of the older kids around us, I sensed it was something bad.

“No,” I said, praying this was the right answer.

“Good,” he said, “'Cause I don't play with fags.”

From then on, I was determined never to do anything that might make that label apply to me. During recess in elementary school, we sometimes played a game called “smear the queer,” where the person who held the football was “the queer.” I doubt the kids knew what
queer
meant, at least not in the adult sense. I certainly did not. But I made sure to never be “the queer.”

By the time I became a teenager and began to understand the basics of sex, words like
queer
and
fag
had been so equated with weakness and inferiority that it seemed only natural for me to look down on gays and want to separate myself from them—especially from gay men. My parents, conservative in all matters sexual, did not approve of gay relationships, but they never had much to say on the subject, in contrast to the special condemnation gay people received at the hands of preachers I saw on television or read about in newspapers. Rather, they simply dumped homosexual behavior into the cauldron with all other sexual acts that took place outside the confines of traditional marriage and was thus to be avoided. Looking back, even if they had been openly supportive of same-sex relationships, I'm not sure that they could have counteracted the vicious antigay message I was hearing all around me.

BOOK: Black Man in a White Coat
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