March 21, 2005

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AIDS and Isolation Among the Navajo

Ellen Rothman Photo by Graham Ramsay

When I first met Marquez in the emergency department of our small clinic on the Navajo reservation, I was struck by his elegant features—almond eyes, delicate skin, long fingers draped casually over his knees. His hair, bleached blond at the tips, was carefully tousled. He was too stylish to be from the rez.

“I’m not sure what’s wrong with me,” he said. “I was supposed to see my doctor in Phoenix for my test results yesterday, but I came home instead. I’ve just been so tired. I wake up at night drenched with sweat. I’ve lost about 70 pounds. And I have this weird skin rash.”

Although I suspected HIV, there were other possibilities. There is a fair amount of tuberculosis on the reservation, and thyroid disease is common among Navajo. But I was concerned that these were not the causes of his problems.

The Navajo reservation has been eerily exempt from HIV and AIDS. Most Navajos never leave the reservation, and those who are successful in the cities rarely return. As a result, there has been a limited influx of HIV. As of this year, we have only 86 cases in the entire Navajo nation of 250,000. Virtually all of our infected Navajo patients contracted AIDS from homosexual intercourse off the reservation and then returned home. For the first time this year, we had diagnosed a case transmitted on the rez. Once diagnosed, most patients choose to receive their treatment in clinics far from their homes. They fear that the community will discover their diagnosis and their sexual orientation.

Journey of an Illness
Marquez had lived in Phoenix for many years, working initially as a flight attendant and later as a waiter. As I suspected, his HIV test came back antibody positive.

Although shaken by his diagnosis, he was not at all surprised. “I kind of thought that’s what it was when everything started going haywire in my body a couple of months ago.” He pulled back his left sleeve and showed me a faint rash on his wrist. “I thought this was KS,” he said, referring to the Kaposi’s sarcoma lesions that can herald AIDS. “It was more purple before, but I scratched it mostly off.” The night sweats, the weight loss, and the chronic diarrhea that Marquez suffered indicated that the HIV virus had already progressed to full-blown AIDS.

“I’ve never been that sick in my life. But, all my friends came to see me. Some of them were like, ‘I know exactly what you’re going through.’ I didn’t even know they had AIDS.”

This was the first case of AIDS I had diagnosed in 10 years, since I was a third-year medical student on the Boston wards. At that time, only a handful of medications were available. The pediatric wards were filled with children suffering the devastating effects of the disease, and it took up to a year to determine whether the baby of an infected mother carried the disease because maternal antibodies could persist for that length of time and viral testing was not yet commonly available. By the time I entered residency two years later, more effective therapies had transformed AIDS from a fatal illness to a chronic disease. Since moving to the reservation, I hadn’t even treated one case.

Long-term Recovery
The next weekend, I was on call in the ER when Marquez was brought in again. “It’s the weirdest thing,” he told me. “I feel all hot, but then at the same time, I’m freezing cold. I feel weak, like I’m going to pass out.”

He looked terrible. The oxygen level in his blood was alarmingly low, and his temperature was 103. Although I had no way to confirm the diagnosis in my small emergency department, I strongly suspected PCP pneumonia, a common presenting illness of AIDS. Our clinic does not have inpatient beds, and I struggled over the next few hours to find a hospital with the appropriate specialty services and an available intensive care unit bed. His oxygen levels had dropped even further by the time I was able to arrange a flight to a hospital in Phoenix.

I next saw Marquez two weeks later, just two days after he was discharged from the hospital where he had indeed been treated for PCP. Marquez made recovery look chic. He wore funky blue sunglasses with a surgical mask and a knit cap. He sported a trendy scarf tied at his throat. “The first couple of nights were hell,” he told me. “I’ve never been that sick in my life. But, all my friends came to see me. Some of them were like, ‘I know exactly what you’re going through.’ I didn’t even know they had AIDS. They took me out to dinner after I got out of the hospital, and I kind of joined the club.”

Although his immediate family had been supportive, he was disappointed by the prejudice and ignorance about AIDS and homosexuality he witnessed on the reservation. “This is nothing to be ashamed of. When I’m feeling better I want to come back and do some work in the high schools.”

In the meantime, he planned to move back to Phoenix. “Over there, I have my friends and all my supports,” he said. “There’s nothing for me here.”

—Ellen Rothman, HMS '98,
practices in northern Arizona
on the Navajo reservation.

The names used in this column are pseudonyms, and the opinions expressed are not necessarily those of Harvard Medical School, its affiliated institutions, or Harvard University.

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Copyright 2005 by the President and Fellows of Harvard College