ASPIRE: AIDS Services, Prevention, Intervention, Research, and Education
Snapshots from a Shared Journey
By Sandra Spence
Photos by Steve Williams
In 2004, the UCSF Positive Health Program(PHP) at San Francisco General Hospital created an international training arm called ASPIRE: AIDS Services, Prevention, Intervention, Research, and Education. With a staff of ten nurses, nurse practitioners, and physicians, the ASPIRE team works to build capacity at AIDS-focused organizations in Tanzania, Zimbabwe, Côte d’Ivoire, Uganda, Kenya, and South Africa. They partner with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) to boost the provision of antiretroviral therapy (ART) for children and adults in the region.
Dr. Diane Havlir, UCSF Professor of Medicine, is the director of ASPIRE and of PHP overall. “Training and education are central to our mission,” Havlir says. “Training African providers in HIV care is an activity that will have immediate and life-saving effects for many persons living with HIV.”
This collection of stories comes from members of the ASPIRE and EGPAF teams. With enduring optimism, they cross the world from rural African villages to the streets of San Francisco and back, to share and to learn.
“Be brave too”
Guy Vandenberg, MSW, RN, ASPIRE, Hlabisa District, South Africa, March 2005
At first glance, you won’t see Guy Vandenberg’s heart pinned on his sleeve. But if you can keep up with this tall, lanky native of the Netherlands (pictured above) and catch the stories he leaves in his wake, you will witness the heart embedded in his work. Vandenberg spends about half of his time in Africa, training healthcare providers. On his first assignment with ASPIRE, he was sent to Mtubatuba, in northernmost South Africa, to train nurses to care for patients who had started ART, recognize side effects, and encourage adherence to therapy. He had years of practical experience to share in his mentoring role. But first, Guy had to get through day one.
"The very first day I worked in South Africa, I couldn’t speak any Zulu, and they were too busy at the hospital to orient me. I was wondering how to make myself useful when I noticed there was one nurse drawing blood all day long. All these patients had HIV and needed their blood drawn for CD4 counts. I said, 'I could do that. I just need to say a few words, so teach me a few words and I can do it.' They were very happy because it freed them up. But I hadn’t realized that most of the HIV patients that day were children. I never take blood from children in San Francisco, especially not sick children. It was terrifying for me.
"These kids were very different from American children. They would just stand there with arms out and with big, scared eyes, but they would be motionless. And I would stick them [to draw blood] again and again. And when I asked for their other arm, they would hold it out. It made it even harder. At least if they had kicked me or screamed or something...
"There was one girl who was probably seven years old or so. She had no veins because she was really sick. I had to stick her three times before I got blood. I said to the counselor who was helping to interpret and direct traffic, 'Please say to her that I appreciate how brave she is. Tell her I’m sorry that I had to stick her three times.' I was emotional, and the little girl noticed. She said in Zulu to the counselor, 'Tell him that he must be brave too.' And then I lost it. I had to step out of the clinic and cry for five minutes before I could go back to drawing blood."
Hope Walks In with a Smile
Steve Williams, Volunteer Peer Educator, ASPIRE, Mtubatuba, South Africa, June 2005
“My name is Steve and I have HIV,” states Steve Williams (pictured above) from a stage on wheels in a village market. When those words reverberate around the crowd in this region of South Africa where one in four are infected with HIV, for a few minutes, stigma’s grip of silence and denial is loosened. With the help of a Zulu translator, Williams tells his personal story, then yields the stage to educators who sprinkle the crowd with facts about how to avoid transmitting the virus.
Soon after Williams began ART in 1999, his newly revived immune system overreacted to a latent tuberculosis infection in a case of what is called “immune reconstitution syndrome.” He spent three months unconscious and near death at San Francisco General Hospital (SFGH). After a lengthy but successful recovery, it is clear that Steve’s glowing good health isn’t just skin-deep; it’s embedded with an optimistic attitude and a resilient spirit that run deep and strong.
He never expected to find himself a world away from San Francisco, but Vandenberg invited Williams to accompany him to South Africa as a volunteer peer educator. “I had no idea what I was going to do,” admits Williams with his big smile. But he soon found plenty to do and attracted a following wherever he went.
His healthful presence alone inspires tremendous hope in patients who are scared about their diagnoses and have yet to see the power of ART. “Patients love to see someone who is HIV positive and who was very, very sick now doing better,” says Williams. With his unassuming manner and African American background, Williams connects with them in a unique way, often inspiring individuals to reveal their positive HIV status and seek help. “I don’t really feel like I train people,” he says. “I’m just talking to get them to open up.”
With patients just starting ART, he shares his personal experience of the ups and downs of drug side effects. “The medications I am on are exactly the same ones they are on. I have had side effects, so I tell them about, for example, the horrible dreams that I was having when I was taking one drug. And they say, ‘Oh, we have that also!’ But I tell them that they will get over that and will do much better when they take their medication every day.”
For healthcare workers, the story of the course of Steve’s illness provides a valuable clinical case study with a positive outcome. Having spent more than 18 months in South Africa and Tanzania over the course of four visits to Africa, Williams and Vandenberg together have created a series of presentations customized for doctors, nurses, and patients to educate them about side effects of ART, using Steve’s illness to illustrate immune reconstitution syndrome.
“We want our story told”
Guy Vandenberg, Steve Williams, Nzega District Hospital, Tanzania, 2007
Three men—grandfather, father, and son—approached Williams and Vandenberg at the end of their presentation to an HIV/AIDS patient support group in Nzega, Tanzania. All three are HIV positive and on antiretroviral therapy. When they heard Williams was a photographer, they insisted he take their picture and tell their story to others. In Tanzania, stigma around HIV/AIDS is strongly rooted, yet these men were not afraid to have their picture taken and their story told. They wanted others with HIV/AIDS to know how ART could improve the quality of their lives.
What had emboldened them? First, the effectiveness of the treatment. The grandfather had been unable to walk when he was initially brought to the clinic, yet, as the recipient of antiretroviral therapy through a program driven by EGPAF with training support by ASPIRE, he made a dramatic recovery. And then there was Williams’s inspiration. If he could come all the way from America to share his story of hope, they wanted to add their own story, too.
Breaking Through Cultural Constraints with Role-Playing
Guy Vandenberg, Shinyanga Region, Tanzania, 2007
Sometimes how information is taught can be as important as what is taught. Role-playing is a technique Vandenberg had used in training sessions for clinicians in North America, but he feared it could be risky in Tanzania, where it runs highly countercultural: education in Tanzania was based on the traditional British system with a teacher typically lecturing to a passive, quiet student audience. Mixing up roles meant that healthcare workers from the “lower” rungs of the rigid professional hierarchy might have to mentor healthcare workers from “higher” rungs; doctors might have to play at being patients.
It turns out Vandenberg’s fears were unnecessary. The students, as shown in the photo above, loved role-playing. In a group of four, one student was randomly assigned to be a patient and instructed to tell the clinician about a specific pain or symptom. Another was assigned the role of the clinician and given a brief excerpt from the patient’s chart. A third student was assigned the role of mentor watching for an opportunity to expand the clinician’s capability in the situation. The fourth student acted as an observer. After some initial resistance, Vandenberg saw remarkable transformations. “For a physician having to play being a patient, once he got it, it was a liberating experience.”
Just as important and practical was the opportunity that role-playing afforded nurses to break through hierarchical constraints and gain confidence acting as mentors to more senior clinicians. This was essential preparation for real training situations they would face when they traveled out to community health centers, where they might have to mentor higher-ranking health care providers such as clinical officers, similar to nurse practitioners in North America. At the same time as nurse mentors were challenged to overcome culturally induced timidity, all the mentors learned to avoid triggering insecurity in clinicians they mentored by reframing their teaching from lecturing to information- and experience-sharing.
Trials along the Road
Juma Songoro, Aisa Muya, and Salvator Hokororo, EGPAF, San Francisco, November 2007
Juma Songoro pauses for a few seconds, and his high-beam smile disappears as he paints a picture of the harsh reality faced by sick people in rural Tanzania. He is showing a picture of a typical road, dusty and deeply rutted, to a rapt audience packed into a conference room at SFGH. His voice becomes overshadowed by concern as he describes how the roads crossing vast distances can be lethally unreliable. He recalls being delayed en route to a hospital site visit because a torrent of water had washed out a bridge. He learned the next day that a woman being brought to the hospital by her husband had bled to death on that same road, just a couple of miles from the hospital, where the water had obliterated the bridge. In the rainy season, that can happen on any of the roads creating the tenuous links between rural communities and the small number of regional hospitals scattered 200 kilometers apart or more.
Songoro, Aisa Muya, and Salvator Hokororo, three EGPAF program officers, are giving their audience a view of the challenges they face expanding the fight against HIV/AIDS in Tanzania. This is the culmination of their two-week visit to San Francisco accompanied by five additional Tanzanian nurses, doctors, and clinical officers. The ASPIRE team has led them to HIV, urgent care, primary care, and dermatology clinics at SFGH and to neighborhood outreach clinics in the Tenderloin district of San Francisco. They visited an HIV/AIDS hospice and participated in a roundtable discussion with people living with HIV/AIDS.
Now it’s their turn to give UCSF and SFGH staff and students a glimpse of their world. Over the course of an hour, Songoro, Muya, and Hokororo recount the story of their goals with EGPAF to extend ART services to over 35,000 patients in the Tabora, Shinyanga, Arusha, and Kilimanjaro regions of Tanzania, a project for which ASPIRE is a key training partner.
For people living with HIV/AIDS, poor roads are a real barrier to adequate care. Journeys to regional hospitals for ART refills and follow-up care can take days. They are expensive and time-consuming trips that can discourage patients from maintaining their therapy. Even patient blood samples are frequently ruined during transport from remote areas to the few testing laboratories at district and regional hospitals. When high temperatures and rough roads render specimens unusable, treatment initiation or medication adjustment can be delayed.
EGPAF faces many more challenges stepping up ART, with the shortage of healthcare workers topping the list and inadequate hospital infrastructure and health record systems following. Yet the enthusiasm transmitted by Songoro, Muya, and Hokororo is infectious, and their ideas for solutions comprehensive—including contracting bicycle owners to transport patient samples.
“Everything can be done”
Aisa Muya, MD, Program Manager, EGPAF, San Francisco, November 2007
Aisa Muya (pictured above) speaks with such a casual articulateness, you can almost miss the quiet intensity and importance of her words. Reflecting on her visit to San Francisco, she calls it “the most useful experience she has had in [her] career.”
A physician and program officer, she speaks of how the treatment of HIV/AIDS is changing the way medicine is practiced in Tanzania. With the influence of the ASPIRE group, the relationship between clinicians and patients is becoming strong and long-term, one that includes counseling about ART and what to expect. In San Francisco, Muya was moved by the quality of hospice care and excited to learn about the availability of high-quality clinical information accessible from websites such as UCSF’s HIV InSite.
Among the ideas she has gathered to improve patient care, Muya is most eager to try customizing drug combinations—“cocktailing”—to maximize suppression of HIV and minimize side effects. Yet, implementing this will require overcoming huge hurdles. In Tanzania, Muya explains, most physicians prescribe ART according to Ministry of Health guidelines. The “one-size-fits-all” recommendations are driven by not only the large number of people requiring treatment, but also the cost and availability of medications.
Drugs included in the government guidelines’ first-line regimens are typically purchased at subsidized rates and provided free to patients. Second-line drugs are generally more expensive and, if available to patients for free, funded by donor foundations and organizations. So, even when patients develop side effects or fail to thrive on first-line regimens, physicians are reluctant to switch patients to other drugs, deterred by the stringency of the guidelines and by the potential instability of drug supplies.
Facing these strictures, Muya is determined to work with physicians at the national level to apply pressure on the Ministry of Health. She envisions including both first- and second-line drugs in treatment cocktails as required for specific patients. But this will require accumulating case studies to convince her medical peers and Ministry officials of the benefits of drug cocktailing.
“I am optimistic,” says Muya. “I see there are many difficult things that are supposed to be impossible. Even when we set out with the [ART scale-up] program, people wouldn’t believe that we would be able to support four districts by this time. It’s been done. We are able. So I think everything can be done.”
“It broke my heart”
Aisa Muya, MD, Program Manager, EGPAF, San Francisco, November 2007
Muya’s visit to San Francisco has also given her insights into the cultural strengths of her country that can help HIV/AIDS treatment there. She marvels at the patience healthcare providers in San Francisco show to patients whose treatment is made more difficult and complicated by psychiatric disorders and drug addiction. She was deeply affected by hearing stories of the life experiences of some of those patients. “It broke my heart,” she says. “We are also poor in Africa, but there is a sense of people caring for each other. Here, people and children are left alone. Children are abused. I talked to patients in the clinic, and they told me about their childhood life, and it was very, very awful. They said they had been abused when they were children. They said they used drugs when they were 14 years old.”
Vandenberg recounts similar feelings experienced by Tanzanian healthcare workers who visited in 2006. “One nurse had sleepless nights after she saw people lying on the streets and expensive cars driving by. She asked us, ‘Where is their family? How is this possible?’”
Vandenberg believes that HIV/AIDS patient support groups that exist in many villages in Tanzania are strong because of the family and community ties. “If a patient doesn’t come to the clinic, the clinic coordinator can call the member of the village support group, who has a cell phone, and ask him to find out why the patient hasn’t come. People help each other. They do childcare for a patient who has to go to the clinic. If somebody is sick, they bring food. That doesn’t happen here as much.”
Pashas with the Team
ASPIRE and EGPAF Team Members, San Francisco, November 2007
An hour after the big presentation to UCSF and SFGH staff, the Tanzanian healthcare workers are gathered together with the ASPIRE team including Vandenberg, Williams, Royce Lin, John Friend, and Catherine Lyons. This is their last meeting together before the Tanzanians return home. Lin announces a pasha for the three presenters. It’s a Tanzanian ritual to congratulate a job well done. With gusto, everyone in the room rubs their hands together and chants with a rising volume, “Pasha, pasha, pasha, pasha, pasha, pashaaa!” Then, with a gesture almost like blowing a kiss, they cry, “Choma! Choma! Choma! Juma! Salvator! Aisa!”
The air is full of laughter, and Swahili phrases fly back and forth. The ASPIRE trainers slip in a few last opportunities to build capacity within the EGPAF team. With gracious encouragement, Lin solicits feedback about the presentation, drawing out compliments and suggestions that will help the program managers share their message in future sessions.
Next, Lyons leads a review of the quality-improvement ideas the group proposed over the course of their visit. Her questions are decisive, yet delivered with genuine curiosity, respect, and self-deprecating humor.
It is almost time for the EGPAF team to depart. Back in Tanzania, they will return to nearly overwhelming challenges. With miles to go to reach their goals, there will be more trips before Vandenberg, Williams, and the other ASPIRE team members “train themselves out of their jobs.” But, along this journey they share good company, optimism, and boundless determination.