[NOTE: This is an UPDATE to a case study initially published in 2009. Read the original case study for appropriate context.]
The Baylor Pediatric AIDS Initiative (BIPAI) was founded by Dr. Mark Kline of the Baylor College of Medicine and Texas Children’s Hospital, both in Houston. The Initiative arose after Kline struck up a relationship with visiting Romanian physicians, who related the serious HIV emergency occurring among Romanian children raised in orphanages during the 1980s. Kline organized public and private donors to assist the Romanians, and BIPAI was born. Its first pediatric HIV clinic was established in Constanta, an epicenter of Romania’s pediatric epidemic.
The clinic had a dramatic effect: annual mortality among the 600 patients fell from 13 percent to 1 percent. Building on that success, BIPAI extended its efforts to Africa. As of 2009, its centers treated 30,000 patients in nine countries. Developing this large network required overcoming daunting operational and financial hurdles. By bringing together a U.S. medical school, corporate and private donors, and government agencies, BIPAI serves as model for delivering medical care to neglected, impoverished populations.
Expanded Access to Care
BIPAI’s clinics, called Centers of Excellence, endeavor to provide world-class care. A major problem is that they are located in only one or two places in each country. Demand is extremely high, and they rapidly become overcrowded. One solution is to establish remote sites that not only provide greater capacity but also are accessible to more patients. The Uganda BIPAI Center of Excellence pioneered this approach. The BIPAI pediatric clinic in Kampala had grown rapidly form its inception in 2004 and by 2006 had over 3,000 patients. Space constraints prompted the organization to start satellite clinics in six Kampala City Council clinics.
As part of a reorganization, these clinics and their 4,000 patients were taken over in 2010 by a nonprofit group based in Kampala’s Makerere University. BIPAI meanwhile has expanded elsewhere in the country as part of a “National Expansion Program” funded by the U.S. government. It now has three Regional Centers of Excellence and supervises HIV care at Ministry of Health facilities in 36 districts. In the second quarter of 2011, these rural facilities reported an active HIV caseload exceeding 47,000, with nearly half receiving anti-HIV medication.
According to Adeodata Kekitiinwa, the executive director of the program in Uganda, “The care in the satellite clinics is similar to that in the Centers of Excellence. However, the satellite clinics use only the family model of care [which treats all family members together as a unit]... One immediate barrier was a lack of trained personnel in HIV/AIDS care in the satellites. Academic training and on-site clinical mentorships were offered to both Baylor-Uganda staff and Kampala City Council clinic staff to build their knowledge and skills in offering care and treatment for pediatric clients.”
The Uganda satellites have also suffered from inadequate stocks of drugs and laboratory supplies. As part of its training program, BIPAI instructs staff on supply chain management to enable them to track and order medical materials in a timely fashion. It also provides buffer stocks to bridge gaps in the government supply system.
Another BIPAI branch that is undertaking a satellite expansion program is the Center of Excellence in Maseru, Lesotho, a mountainous, largely rural enclave surrounded by South Africa. The plan commenced in 2007, when Texas Children’s Hospital, Baylor College of Medicine and Bristol Myers-Squibb’s Secure the Future Foundation promised to fund the construction of ten satellite centers of excellence in Lesotho (one for each district of the country). The government of Lesotho then committed itself to financing the satellite clinics’ operating costs.
So far, only two clinics are in operation, with a combined total of about 300 active patients, so the program has yet to face the complications that scale-up may entail. Two more satellite clinics are expected to open in 2012 after a long delay in construction. Unlike in Uganda, staff training has not proved to be a major challenge. Personnel for the satellites are hired in Maseru and spend several months at the Center of Excellence before their deployment to the satellite clinic.
The satellite clinics focus on pediatric care to ensure that their small staff has the time for complicated pediatric issues. There are very few other pediatric care providers in the district whereas adult patients can be appropriately managed at the district hospital clinics, which are next to the satellite clinics. In general, district hospitals provide radiology and laboratory services for the children as well as the as well as supplying medicines. Care at the pediatric satellites is thus comparable to that in the Maseru Center of Excellence, although there are weaknesses in the management and administrative support issuing from the distant Maseru facility.
Expanded Age Range
The rollout of anti-HIV treatment in many sub-Saharan countries has made it possible for large numbers of infants perinatally with HIV to reach adolescence. In many of these countries, though, HIV programs focus on either adult or pediatric care. The specialized psychosocial needs of adolescents go unmet.
“If safety nets in the form of psychosocial support interventions are not put in place throughout the region in the very near future, many of these adolescents may be condemned to treatment failure, thereby reversing the great strides that many sub-Saharan countries have made in combating pediatric HIV,” warns Edward Pettitt, BIPAI teen project director.
Botswana has become the model for adolescent programs. Thanks to the introduction of effective therapy, the Botswana Centre of Excellence currently has 701 patients from 13 to 21 years old enrolled in care. This adolescent population is expected to grow to over 1,000 by the the start of 2013. Implementation of a new teen program began there at the end of 2011, with the Botswana Ministry of Health considering it a top clinical priority. Eventually, similar transitional care programs will be rolled out at other BIPAI sites in sub-Saharan Africa.
The primary goal of the Botswana teen program is to assist perinatally infected adolescents in developing the ability to independently manage their health once they become part of the adult system. Aside from the overall behavioral and psychological issues of adolescence, the transition program addresses such practical topics as HIV transmission and prevention, medication management, knowledge of personal medical history, identifying symptoms that require an acute care visit, advocating for individual needs with the medical team, making appointments, obtaining transportation to appointments, and locating local support groups. Teens’ success in the program will be followed by medical monitoring, discipline in keeping appointments and taking medicine, and periodic review by a multidisciplinary team of physicians, teen leaders, peer educators, psychology personnel and nurses.
A looming issue at BIPAI has been that the end of funding for the Pediatric AIDS Corps, which brought 50 or 60 U.S. doctors each year to the BIPAI clinics and remote sites. Bristol-Myers’ support for this program ended in July 2011. It has since been transformed into the Texas Children’s Hospital Global Health Corps. “The goal is to start with the BIPAI infrastructure and increase services to children and families in a holistic fashion,” says Mike Mizwa, BIPAI’s chief operating officer.
The Health Corps doctors are based at the Centers of Excellence or, as in Ethiopia, at local medical schools and hospitals outside the BIPAI network. Most of the funding comes from Texas Children’s fundraising efforts and private donors, with some continuing support from Bristol-Myers. The doctors’ primary function is still pediatric care and treatment. Their secondary role is to build local capacity through training programs and developing new healthcare programs with the national Ministries of Health. There were, unfortunately, only 32 Corps doctors in 2011, the program’s first year.
A greater venture into broader medical care is Texas Children’s Hospital’s new Center for Global Health. Noted pediatric hematologist Russell Ware, a new recruit to Baylor and Texas Children’s, heads the Center. It operates in parallel with BIPAI. The Center’s first project is a screening and treatment initiative for Angolan children with sickle cell disease.
Sickle cell disease is caused by a widespread genetic defect that causes red blood cells to have short lifespans, resulting in anemia. The cells themselves are distorted in shape and inflexible. They clump together in narrow blood vessels, causing extremely painful blockages. Just one drug modestly ameliorates sickle cell disease, and care is mostly palliative. (In the U.S., children with sickle cell disease receive frequent emergency transfusions with normal blood.)
The interest in sickle cell disease arose after another of Mark Kline’s encounters with a visiting delegation, this time containing representatives from the national Children's Hospital in Luanda, Angola and the Chevron Corporation (which has large oil extraction operations in Angola). The meeting led to a needs assessment visit. Ware says, “After that trip, I was convinced that Angola represented a unique opportunity to expand sickle cell care and treatment. With a huge population of at-risk children, but minimal diagnostic and treatment capabilities, some small changes would have great impact.” A pilot screening program commenced in July 2011. Ware recounts, “In the first six months, we screened over 6,000 infants. We demonstrated the ‘proof of principle’ by identifying and finding affected infants, then initiating life-saving care and treatment.”
In 2012, the sickle cell initiative intends to expand into BIPAI’s Ugandan and Tanzanian Centers of Excellence. Efforts are also beginning entirely outside BIPAI, in Brazil, Jamaica, Venezuela, Dominican Republic, and potentially Democratic Republic of Congo, Liberia, and Equatorial Guinea. And after that? “BIPAI was the prototype,” says Ware. “The function of Center for Global Health is to foster a wide variety of global initiatives driven by Baylor faculty. We have proposed a dozen programs to be championed by leaders at Baylor, some already on faculty and some to be recruited.”
By David Gilden