Mr. Karan is a third-year medical student, David Geffen School of Medicine at UCLA, Los Angeles, California; e-mail: email@example.com.
Author’s Note: The name in this essay has been changed to protect the identity of the patient.
I won’t soon forget when Ms. Kitumba cried. She was stocky but with a surprisingly peppy gait and beautiful light brown eyes that laughed with childish joy. I would meet her a few times while interning at an HIV clinic in Uganda’s bustling capital of Kampala, but I was surprised during our first encounter as she entered the room and walked over, swaying side to side with the energy of someone who had not just waited two hours to see the doctor, someone who was not infected with HIV. Ms. Kitumba had and she was, but it didn’t matter to her, because today was a special day.
“What brings you in, Ms. Kitumba?” asked the physician on staff that afternoon—her usual doctor had gone home early. “We’ve already given you your medicines just a few weeks back—have you lost them again?” he asked as he looked over her old charts from a worn manila folder. Ms. Kitumba was one of many women who had a hard time adhering to her antiretroviral regimen, a noncomplier whose illness we feared would progress quickly.
“Actually, doctor, it is not that. I have my medicines, and I’ve been feeling quite good lately.” I noticed Ms. Kitumba’s zeal beginning to give way to hesitation.
The doctor looked up, his eyebrows slowly rising in question.
Ms. Kitumba continued, somewhat nervously, “You see, doctor, actually, I’ve been thinking more about having a child.”
The doctor stared back in silence, his forehead crinkling with concern.
“I know, doctor, that the HIV can be spread to my child, so I want to see what to do.”
The doctor closed Ms. Kitumba’s folder and leaned back in his chair. He looked at me and explained: “Ms. Kitumba has been coming to our clinic on and off for some years now. But she doesn’t take her medicines on time and her viral load isn’t controlled. And for those people, the risk of transmission is very high.”
Ms. Kitumba remained seated, perhaps waiting still for better news. The doctor resumed: “We cannot control this epidemic if we keep having more infected children. I’m sorry, Ms. Kitumba, but I need to ask you to be more responsible.” Her eyes began to fill with tears.
As clinicians, our vision is often narrowly focused on health—for Ms. Kitumba, we focused on her CD4+ counts, her HIV RNA load, and ultimately her risk of transmission to a future child. From listening to the exchange between Ms. Kitumba, a patient with issues of nonadherence that may or may not have been surmountable, and the doctor, whose primary, well-intentioned goal was to minimize the potential of HIV-1 transmission in his country, I learned that patients are complex people with difficult decisions to make, decisions that are often governed by far more than their time in a clinic. Central to her presence as a woman in Ugandan society was Ms. Kitumba’s desire to have a child, a desire that was not adequately valued by the doctor, who only assessed the situation through his medical and public health lens.
I heard from a mentor a year later that Ms. Kitumba began religiously taking her medication after meeting with her regular physician, who inspired her to adhere to the regimen for the sake of her future child. She began to control her viral load and boost her CD4+ count, and she ultimately delivered a healthy baby girl. She did not have all the luxuries that an uninfected mother in Uganda enjoys—she had to endure a C-section and would not be allowed to breastfeed, but she was able to fulfill a part of her life that was in many ways more important to her than her clinical outcomes. The needs of society from a public health perspective are often at odds with the decisions individual patients make, but we cannot forget that patients are more than their diseases. Ultimately, they are no different than doctors and all other people—they want the freedom to make choices and the inspiration and support that will help them make the right ones.