Imagine that you've been asked to run a primary care clinic in Port-au-Prince, Haiti, the poorest area in the western hemisphere with the highest rate of HIV/AIDS. The Haitian Ministry of Health wants you to provide AIDS care for hundreds of HIV-infected adolescents, mostly women who live in poverty and many having been sexually exploited. You must determine necessary services and structures, incentives for patients to maintain appointments and treatments, counseling priorities, and more.
A full classroom of first-year medical students were recently challenged with this task and other assignments in a global-health-focused session of Medicine, Patients and Society, a yearlong course that forms the foundation of clinical skills for Weill Cornell Medical College students.
To personalize the diverse collection of medical issues that is "global health," Dr. Daniel Fitzgerald, associate professor of medicine and co-director of Weill Cornell's Center for Global Health, asked Elizabeth Dumay, a Haitian citizen, wife and mother living with HIV/AIDS, to give the introductory lecture. Elizabeth is being treated at the Weill Cornell–affiliated GHESKIO Centers in Port-au-Prince, where she serves as a peer counselor and patient advocate.
"Even though we look at the whole globe when we talk about global health, medical care should be patient focused," Elizabeth said, translated to English from Haitian Creole. "We work at a clinic in Haiti that treats HIV/AIDS, but this could be happening anywhere."
Elizabeth's clinical history began between 1988 and 1992 when she experienced symptoms of having HIV/AIDS. "I knew I had the disease, though, before I got the official diagnosis," she said. Official diagnosis was confirmed in 1997 when her first husband died of the disease. "In 1998, I said I've got to live my life. I've just got to keep going. There were no antiretroviral drugs during that time. So my biggest problem was that there was no treatment — only AZT, which sold for $1,000 per month, more money than I could ever make at work. I kept positive that one day there would be a treatment."
By 2001, Elizabeth began to hear of medications available in the United States. Through the help of relatives in the U.S., the medicines were purchased and sent to her. "Then I looked around and saw all the others in Haiti who didn't have that medicine. I worked with GHESKIO and we fought for those medicines. Everyone said it would be impossible. We got them, and now I have them — for free." She explained that one irony of this success is that "taking the medicine makes you feel better and you start to feel hungry again — but you can't find the food." GHESKIO provides food and social support for HIV/AIDS patients, in addition to antiretroviral therapy.
Access to treatment was only half the battle. "Doctors were afraid of me when I needed the drugs in the 1990s," she said. "I found one doctor who was good, but most stigmatized me horribly." Once, an IV infiltrated her left arm and Elizabeth needed immediate medical attention. The nurse handed her some cotton, would not touch her, and told her to "do it herself." The doctor then transferred Elizabeth to another hospital. In church, fellow parishioners were afraid of sharing the communion cup, and she felt pressure to find a new church that would accept her. "I remember thinking to myself, instead of stigmatizing me, couldn't you sit down and at least think about this." Elizabeth told of how HIV/AIDS patients graduate from universities with degrees but are not hired for jobs. And even now, after GHESKIO exists as a highly successful medical center, there are those who are frightened to cross the street and be seen entering the building.
The complexities of training in the field of infectious diseases were apparent as students learned not only of the medical aspects in treating disease, but of the psychological, sociological and political challenges. For patients who may be illiterate, GHESKIO has creatively used graphics to educate about treatment compliance and the importance of making doctor appointments.
"Sometimes you must negotiate," explained GHESKIO physician Dr. Patrice Severe, who deals with the voodoo community where HIV/AIDS is seen not as a medical condition but as a curse. "I went in and talked with voodoo priests. I negotiated. We reached certain agreements that were helpful in stopping the spread of HIV/AIDS." Elizabeth added, "If you don't respect someone's right to their own religious beliefs, you will lose the patient. I walk with my patients hand in hand. I follow with them, but I continue to educate them. There is a slight change in lifestyle with taking treatment but you can still keep living. I think I'm an example."
After the earthquake in Haiti, all infrastructures were destroyed and an increase in the number of rapes of younger women was reported. GHESKIO created a rape crisis unit and actively sought to help young women, encouraging them to come in for HIV testing and treatment. The younger generation is the most difficult population to work with in terms of gaining cooperation in adherence to taking medicine, explained Dr. Rachelle Bertrand, who runs the adolescent clinic at GHESKIO for patients ages 10 to 23.
Elizabeth Dumay
"This group doesn't listen a lot," Dr. Bertrand said. "Medically, it is a very different type of experience dealing with young people who don't want to listen to what you have to say. We teach them why they are taking the pills. We make team decisions involving nurses, field workers who make visits to patients' homes, and other staff to gain compliance. It's team decision-making."
Dr. Bertrand advised students, "Examine your environment closely before you go in. Don't go in there and impose yourself. Try to communicate with them. Understand their reality and integrate." A novel tool used in monitoring this difficult-to-track population was providing the young people with mobile phones. They found the phones to be "very cool" and made good use of them. "This effort helped us to gain compliance with their treatment and made them feel they are important in the therapy."
Asked by students what the biggest complaint Elizabeth hears from patients is, she expressed the need many have for psychological help in telling their children, their parents, or their partner the news of their HIV status. But the most common complaint comes from women who want to have a child. "You must consider the situation and look at their CD4 counts and be honest with them," she said. "It's complicated. You cannot tell a patient a lie."
Elizabeth's final thoughts to the students were just as resolute: "Your generation is more educated about HIV/AIDS than your parents' generation. So you have a greater responsibility. If you hear a health care worker discriminate, say something. Be leaders of a revolution that this never happens. You can step forward against that discrimination. You young doctors are very important to providing patient care without stigmatization."