I know the exciting stuff these days is healthcare reform, but I happen to be in Uganda for a month, taking care of the female ward at Kisoro hospital.
I was recently called away from rounds for an urgent admission. I arrived to find a thin woman in her 50s, dressed in swaths of colorful fabric. She was carrying one of the little black plastic bags that people use to bring vegetables home from market. Before I could ask her anything she coughed, hard and wet. Then she spit a mouthful of bright red blood into the bag. She had a fever of 101F and had a big right side infiltrate. I didn’t need a laboratory to tell me this woman likely had TB.
This woman is a cardiac patient in the chronic care clinic. There are several pages of notes documenting her heart condition, which is known as endomycocardial fibrosis. She’s been seen by the legendary Jerry Paccione, who politely rebutted the previous resident’s opinion of hypertension with a “not likely” scribbled in the margin.
We talked for a while, and eventually I thought I had a pretty complete history. I started to finish up, and sent my mind back across the most likely diagnosis. Why did this woman get TB?
“Have you ever been tested for HIV?” I asked her.
The way her eyes went left and right, scanning for nosy ears, immediately told me the answer. I stepped forward so she could whisper, and motioned my translator to do the same. The words she muttered were barely audible.
“She has HIV,” my translator said.
I looked down at the five pages of “Chronic Care Management” notes I was holding. They went back as far as 2006, and she’d never mentioned the fact that she had HIV.
“Do you have a doctor taking care of your HIV?” I asked. She said she went to the HIV clinic in this hospital for her care.
So she wasn’t telling her heart doctor that she had HIV. And she wasn’t telling her HIV doctor that she had a heart condition. The two sets of doctors were a hundred yards away from each other, and for three years this duplicity had been maintained.
It makes me angry. I can’t help it. You don’t want to talk about HIV? You don’t want to bring it into the open? Fine. But other societies have been down this road before. I was just a kid when the HIV epidemic started in the U.S., but even I remember that Silence = Death.
(more about my time in Uganda at whougandabelieve.blogspot.com)
On Tuesday, March 10th Dr. Kathryn Anastos and Jon Wallen came to Social Medicine Rounds to discuss their work in Rwanda. Dr. Anastos’ story illustrates one answer to the question: “What does a social medicine doctor do?”
Dr. Anastos is an Internist who graduated from the Residency Program in Social Medicine in 1983. She is currently a Professor at Albert Einstein College of Medicine in the Department of Medicine as well the Department of Epidemiology and Population Health. She is known for her pioneering work in the study of HIV in women as principal investigator of the Women’s Interagency HIV Study (WIHS). Jonathan Wallen is a New York photographer who specializes in architectural and landmark photography. Since 2003 they have become increasingly involved in work in Africa, some of which they shared last Tuesday.
Mr. Wallen filled the walls of the third floor conference room with pictures from the Tubeho (“To live again”) Project. Tubeho documents the stories of female victims of the Rwandan genocide and consists of a series of photographs with accompanying stories (see an example at this link). These were disturbing stories. The pictures that accompanied them showed both women in the full bloom of life as well as others whose spirits and bodies seemed broken. Showings of the exhibition have been used to raise funds for the genocide victims as well as to bring attention to the links between gender-based violence and the spread of HIV.
Dr. Anastos framed her work in the context of Community Oriented Primary Care (COPC). She shared her initial skepticism, developed from her work in the Bronx, in COPC as a model of care. Rwanda, however, had changed her point of view.
The couple’s involvement in Rwanda began in 2003. Dr. Anastos had been contacted by Les Veuves (the Widows) a group of genocide survivors, many of whom were infected with HIV. They were incensed that they did not have access to treatment while their victimizers – on trial for genocide – were receiving HIV medicines. Dr. Anastos had worked as an administrator at the Montefiore Medical Group and felt she knew about building an efficient, comprehensive, high quality primary care practice for a chronic disease. As she put it, her credibility was as an HIV expert, but her skill was as a manager. With assistance from the Stephen Lewis Foundation she helped found We-ACTx (Women’s Equity in Access to Care and Treatment) in mid-2004. The goal was to create an HIV treatment program, but this implied first setting up HIV counselling and testing.
One of the lessons of this experience was to ” first, provide the services people ask for, not just those professionals think they need”. This, she felt, was the essence of COPC. And what people wanted was wanted medical care (to prevent dying and promote health), HIV testing, medical care for their children, food, income, and – a top priority - education for their children. The local women rejected the idea of going out “into the bush” to provide care. They wanted it done through existing infrastructure and using local nurses and clinics. By knitting together multiple small grants an HIV testing program was implemented in September of 2005 and has by now performed over 50,000 tests. In January of 2006 anti-retroviral care was introduced and there are currently 2,400 people on ART, essentially “everyone who needs it, gets it”. The program is implemented in coordination with 24 community partners and is staffed by 2 physicians, and 12 nurses. She feels that the necessary skills to run the program exist locally (“if we left now, the program would continue”) but that the local staff continues to need salary support.
For a beautiful look at the WE-ACTx progam in action, you can see pictures in the linked slideshow.
Because of the focus on meeting people’s expressed needs, several “off mission” programs had been created. “Just because I think it is not health service related, doesn’t mean we don’t have to find a way to provide it.” These off mission programs included the provision of food supplements, creation of income generating activities (originally doll making, now bag making, see Ineza), community based education, and a program to help with school fees.More recent activities are a cohort study (requested by the community) and programs to address cervical cancer. Cervical cancer, an essentially preventable disease is the number one cancer killer in Rwanda.
In considering the successes of their work (and of the COPC model) Dr. Anastos pointed to the strong sense of community in Rwanda. “There is no cult of the individual. It is always my family, my community, my country.”
Summary: The USA and international recommendations no longer emphasize using risk factors to target groups for HIV-testing. Using a Guatemalan database of HIV tests, we developed a clinical prediction rule to guide decisions on HIV-testing. Prior to HIV-testing, data were collected on demographics, risk factors and prior testing. Based on a theoretical construct incorporating demographics, known HIV risk factors and symptoms, we developed a logistic regression model to predict HIV seropositivity. Between 2000 and 2005, 16,471 tests were performed, of which 19.8% were positive. The algorithm successfully predicted 1883
of 2489 HIV-positive tests (sensitivity 76%, likelihood ratio [LR]-positive 2.45) and 6282 of 9086 HIV-negative tests (specificity 69%, LR-negative 0.35). Although the model indices are robust, applying the model in a clinical setting would have little impact on improving selective testing practices. Our findings support current recommendations for universal HIV-testing, not selective testing based on risk factors. Before these recommendations can be adopted widely in Guatemala, treatment access needs to be assured and protections put in place for people diagnosed with HIV infection.
Commentary
For many years HIV testing was recommended primarily for people who had specific risk factors. But a number of developments have led to an expansion of the criteria for HIV testing and since 2006 the Centers for Disease Control (CDC) has recommended that all persons in the US from ages 13 to 65 undergo HIV testing. This change in recommendation was based on several developments. We now have effective treatments for HIV disease, treatments which can also reduce the risk of HIV transmission. Persons who are aware of their HIV diagnosis seem to decrease their risk behaviors. Universal testing programs have been quite successful in reducing blood-borne and maternal to child HIV transmission. On the other hand lots of experience with risk-based protocols shows they miss patients who are HIV infected. The UNAIDS has also abandoned risk-based HIV testing, instead endorsing voluntary universal screening in places where HIV is prevalent, treatment is available and proper counseling can occur.
We had a database of over 16,000 HIV tests done at the Luis Angel Garcia Clinic, an HIV specialty clinic located at the Hospital San Juan de Dios in Guatemala City. These tests had been done over a five year period (2000-2005) and about 1/5th were positive. We had collected information on risk behaviors, demographics and symptoms before the tests. With such a rich database, we wondered if we couldn’t develop an algorithm to predict who would be HIV infected and who would not.
We based our algorithm on three different sets of data:
1. Demographic data : income, education, ethnicity, and marital status. Not surprisingly we found that lower income, lower education and Mayan ethnicity (all signs of social exclusion) were associated with HIV infection. So was being married.
2. Risk behaviors: Having an HIV-infected partner and being a man who has sex with men were the most strongly associated with HIV infection in our sample. So were being involved in commercial sex work, having a history of STD’s, using IV drugs, and reporting more sexual partners.
3. Symptoms: A variety of symptoms – fevers/sweats, weight loss, oral thrush, chronic cough, recurrent sores, and diarrhea were all highly associated with HIV infection. In fact, diarrhea was the most predictive of any of the variables.
These findings confirm what we already know about HIV infection and show that our population is not all that different from other HIV populations. But could we use these associations to predict the results of the HIV tests?
The answer is that we could not. Our prediction algorithm failed quite miserably. The algorithm successfully predicted only 1883 of 2489 HIV-positive tests (sensitivity 76%, likelihood ratio [LR]-positive 2.45) and 6282 of 9086 HIV-negative tests (specificity 69%, LR-negative 0.35).
In simple English, many people with lots of risk factors were HIV negative. And many people with no or few risk factors were HIV positive.
The algorithm did much better than chance alone, but not enough to be very useful. (This is an excellent example of the distinction between statistical significance and clinical significance).
These findings would support recommendations for universal testing. In the Bronx we are currently in the middle of a campaign to have everyone HIV tested. But should everyone in Guatemala get HIV tested?
Despite our data we felt it was premature to call for universal testing of all Guatemalans. There is no national protocol for counseling and testing, high quality tests are not universally available, there remains enormous stigma and discrimination against those with HIV, and treatment is not available everywhere. Perhaps the place to start is providing HIV testing and treatment to all pregnant woman. This, however, is a challenge because many pregnant women in Guatemala do not get prenatal care.
We concluded that: “when considering public policy for HIV-testing, the risk profile of the individual seems less important than the social and medical context in which testing takes place.”
For a reprint of the article, please contact Matt Anderson. To find out more about the work of the clinic please contact Dr. Eduardo Arathoon
Sarah Friedland, a filmmaker and friend who has collaborated with us in producing documentaries about health activists, is currently on tour with Thing with no Name, a film she directed about HIV in South Africa. Its next showing will be at the Starz Denver Film Festival from November 13 to 19,2008.
The film, shot in the summer of 2006, traces two Zulu women with AIDS as they begin treatment with anti-retroviral medications. The following You Tube clip gives a sense of the issues raised by the movie as well as its visual beauty and quiet flow.
Here is their description of the film:
Thing With No Name, a feature-length documentary, is an intimate portrait that follows two women with full-blown AIDS in rural South Africa as they try to access treatment through the public sector. The film takes the viewer to Okhahlamba, a traditional Zulu area nestled in the shadow of the Drakensburg Mountains, a stunning UNESCO World Heritage Site. Filmmakers Sarah Friedland and Esy Casey were introduced to this community by one of its members, their friend and Ground Producer Phumzile Ndlovu.
Through this connection, the filmmakers were able to integrate into the families with ease, participating in the daily activities of people living with the illness, and sharing in their moments of pain, joy, and humor.
This film is a portrait of two families, and more specifically, two individuals: Danisile Mvula and Ntombeleni Mlangeni. The film opens with both women describing their history and understanding of HIV/AIDS. From there, it takes the viewer through both womens’ experiences as they initiate treatment. Danisile responds well to the medications that she is now committed to for the rest of her life; she creates nicknames to help her remember the different pills, and goes over the protocol with her family and her homebased caregiver, a volunteer nurse. Ntombeleni does not respond as positively, losing all strength. Unable to walk, she is carried home from the hospital on her sister-in-law’s back. She becomes delirious, refusing to take the medicine, but gradually adjusts to it, and there is a brief moment of calm as both women begin their new reality. At this stage, other aspects of Ntombeleni and Danisile’s lives are explored: Danisile’s strained relationship with her teenage daughter, and the traditional Zulu ceremonies that Ntombeleni’s family
holds to combat her illness in their own way.
The filmmakers have also produced a production blog recounting the story of the movie’s creation and current distribution. For an interview with Sarah Friedland, see Indiewire.
“One of the things I have done that I am most proud of (and feel it would be of interest to the Social Medicine Alums) is become a trustee for the Global Aids Interfaith Alliance (www.thegaia.org). This organization was founded in 2000 by a retired Episcopal priest (Bill Rankin) and a neurosurgeon at UCSF (Charles Wilson) as a response to the AIDS crisis in Sub-saharan Africa. The organization partners religious groups of any affiliation with village level projects in Malawi (one of the poorest countries on earth with a 15-40% HIV positive rate). These projects promote women’s empowerment, orphan care, home based care of AIDS patients and income generation activities tailored to the village needs. GAIA also trains nurses in Malawi and supports AIDS support organizations and infant crisis centers for orphaned infants requiring formula. I have done volunteer work in Malawi the past two summers in an Anglican mission hospital in Nkhota-kota, a Catholic parish in Mchinji, and a Baptist clinic with mobile clinics in remote villages. I am interested in promoting Global Health in medical schools and bringing medical students there in the future. I also give many talks on the status of HIV/AIDS in Malawi to churches, hospitals, schools, nursing homes and even a local Rotary club in order to help raise awareness of the crisis and how easy it is for us to help. Anyone with an interest in this subject or to learn more should go to the website and feel free to contact me by email or phone. I will be returning to Malawi in two weeks with a group of high school students and their parents for more clinical and youth oriented activities. (July 8-22). Thanks for the opportunity to talk about this worthy organization (they count Paul Volberding and Jay Levy among their advisors!)”
Etta Eskridge MD
Assistant Professor of Medicine
NY Medical College and the Westchester Medical Center eskridgee@aol.com
(914) 6462799
559 Gramatan Ave
Suite 202
Mount Vernon, NY 10552
The views and opinions expressed on this site do not necessarily reflect the views of Montefiore Medical Center, Albert Einstein College of Medicine, Yeshiva University or the Social Medicine Publishing Group.
On Tuesday, March 10th 
