Baylor College of Medicine Children’s Foundation—Lesotho (BCMCF-L) operates the Baylor College of Medicine/Bristol-Myers Squibb Children's Clinical Center of Excellence (COE) in the capital, Maseru, and five Baylor College of Medicine/Texas Children’s Hospital/Bristol-Myers Squibb Satellite Centers of Excellence (SCOEs) in Botha-Bothe, Leribe, Mohale’s Hoek, Mokhotlong and Qacha’s Nek districts. BCMCF-L also provides medical expertise and professional training to Ministry of Health hospitals and health centers throughout the country. The SCOEs particularly help decentralize health care outside the capital, since each satellite acts as a catalyst to build its outreach programs, Teen Clubs and educational efforts. BCMCF-L staff provide practical hands-on training in HIV, TB, and general child health at the COE, SCOEs and on-site at public health facilities.
In many ways, geography remains the greatest hurdle for BCMCF-L to overcome. Lesotho is small but very mountainous, making travel extremely difficult for people living in the country’s many remote villages. Thus, while Lesotho’s families need the same testing, counseling, care, treatment and psychosocial services typical of any HIV-affected family, BCMCF-L faces significant challenges in getting its services and education to those people.
In the coming years, BCMCF-L plans to expand its psychosocial services for all ages, particularly for adolescents. By the end of 2014, Teen Club membership at our COE and SCOEs had grown to include over 900 HIV-positive adolescents. Caring Fathers, a support group for men who have HIV-infected family members, encourages men to get tested, access treatment, and support their families. Also unique among the BIPAI network, Lesotho provides comprehensive medical evaluation of children released for international and local adoption from orphanages in Lesotho. Thus far, 100 children have been evaluated.
BIPAI’s Global Health Corps (GHC) physicians are based at the Maseru COE, and together with a strong local medical team provide direct patient care to HIV-exposed and infected children and their families. Additionally, they provide medical education to health professionals throughout the country through didactic lectures and side-by-side mentoring both at the COE and at health centers and hospitals across the country. GHC physicians spend approximately 25% of their time providing health education and medical care outside of the COE. Those interested in inpatient medicine rotate through pediatric wards at the nearby national referral hospital – Queen ‘Mamohato Memorial Hospital – where they also contribute to training young physicians during their internship. Opportunities for medical student education are also available, as in 2014 Lesotho established its first medical school. Opportunities also exist for GHC physicians to contribute to local health care policy by serving on relevant technical advisory committees to the Ministry of Health.
Recently, BCMCF-L has made efforts to improve and increase its local research capabilities. GHC physicians interested in research and quality improvement efforts will find a receptive environment. New programmatic endeavors are welcomed. For example, a previously funded program involved improving diagnosis of tuberculosis in children. BCMCF-L is committed to improving the health and well-being of all children in Lesotho, leading to endless opportunities for motivated, innovative physicians.
To ensure universal access to care, treatment and support services for all HIV-infected and –affected children and their families throughout Lesotho; support prevention of new infections; and equip health care providers with knowledge and skills to manage common pediatric illnesses.
To provide high-quality, high-impact, highly ethical pediatric and family-centered health care, health professional training and clinical research, focused on HIV/AIDS, tuberculosis, malaria, malnutrition and other conditions impacting the health and well-being of children and families worldwide.
Year founded: 2005
Services: tuberculosis, HIV/AIDS
Total patients in care: 4,711
Health professional trained: 218
Total budget: 4.7 million
BCMCF-L takes a holistic approach to HIV care and treatment. Although most of our patients are HIV-infected children, we also serve their HIV-infected family members. Service provided include Prevention of Mother-to-Child Transmission of HIV (PMTCT), early infant diagnosis, antiretroviral therapy (ART), adherence counseling, treatment literacy, TB diagnosis and treatment, nutritional care and immunizations.
Epidemiologic Data and Clinic Statistics
Below is a brief overview of the HIV/AIDS epidemic in Lesotho and the scope of our work.
HIV/AIDS in Lesotho
Lesotho has the second highest HIV prevalence in the world at 23.1%. As of 2012, there were 360,000 persons living with HIV (PLHIV). ART coverage is estimated at 57% for adults and at 26% for children (Lesotho National HIV and AIDS Strategic Plan, September 2013). 72% of adults and children remain in treatment 12 months after initiation of ART. PMTCT coverage has increased from 12% in 2005 to 58% in 2012. New HIV infections among children have decreased from 6,100 in 2001 to 3,700 in 2012. Although there have been recent gains in reducing new child infections, much work remains to be done in reversing the HIV/AIDS epidemic in Lesotho. [Source for all unmarked statistics: UNAIDS 2012]
Maseru COE Statistics
Since opening in 2005, over 9,400 patients have been enrolled at the COE. As of January 2015, our COE has over 3,100 active patients, of whom 500 are HIV-exposed infants. 92% of the HIV-infected children, adolescents and adults are receiving ART. Annually, HIV testing and counseling is provided to almost 2,000 individuals.
Satellite COEs Statistics
As of January 2015, our SCOEs have a total of over 1,100 active patients. As in Maseru, almost all patients are on ART. Since our SCOEs began operations, over 1,500 patients have been enrolled. Each year, nearly 3,000 individuals are tested for HIV at the SCOEs.
Clinical Care for Children and Adults
BCMCF-L takes a holistic approach to HIV care and treatment. Although most of our patients are HIV-infected children, we also serve their HIV-infected family members.
Prevention of mother-to-child transmission of HIV infection is the cornerstone in the fight against pediatric HIV. BCMCF-L continues to support the Lesotho Ministry of Health in providing all HIV-infected pregnant and breastfeeding women ART treatment for life. This new strategy for PMTCT benefits the woman, her child and her family.
Early Infant Diagnosis
Without treatment, one-third of HIV positive infants will die before their first birthday and one-half will die before their second birthday [Source: UNAIDS 2013]. Early infant diagnosis is essential for reducing infant mortality. BCMCF-L proactively tests exposed infants using HIV DNA PCR technology in collaboration with Lesotho’s national reference laboratory.
Antiretroviral Therapy (ART)
ART is the cornerstone of HIV treatment, and BCMCF-L provides life-saving therapy to children of all ages. Monitoring of treatment success and potential medication side effects is provided on a scheduled basis. BCMCF-L clinicians are local experts in pediatric ART care and often consult on complicated patients receiving care at other facilities. BCMCF-L also provides 2nd-line and 3rd-line treatment options for those who have failed therapy, in consultation with the Ministry of Health ART Advisory Committee.
Consistent adherence to ART is essential for treatment success and prevention of unnecessary morbidity and mortality. Before initiation of ART, patients receive thorough adherence counseling to prepare them for their treatment regimens. BCMCF-L always has a social worker on duty for ongoing adherence counseling and psychosocial support based on referrals from our health professionals.
HIV can be an overwhelming diagnosis for children and family members alike. BCMCF-L has full-time treatment literacy staff to support our patients and their caregivers in understanding how to take their medications. They also help parents gradually disclose their children’s HIV status to them as they grow and become better able to understand their diagnosis and treatment. Visual aids comparing CD4 cells to soldiers keeping them healthy are used to help children understand why their medication is important.
TB Diagnosis and Treatment
Since HIV and TB are inextricably linked, BCMCF-L actively screens patients for TB and provides prophylaxis. Infection control procedures have been strengthened and patients receive a daily briefing on TB prevention and diagnosis. BCMCF-L provides TB treatment for children regardless of their HIV status. Recent efforts have improved the care of HIV-uninfected children suffering from tuberculosis and many children are referred to the COE and SCOEs for this care.
BCMCF-L has a full-time nutritionist who provides consultations to parents whose children have been diagnosed as malnourished. Therapeutic foods are provided to children with severe malnutrition through Ministry of Health programs. We have also partnered with other organizations to support the establishment of Nutrition Corners across Lesotho where health professionals educate mothers on proper nutrition for infants and young children monthly. Sessions are interactive with a hands-on demonstration of nutritious food preparation using readily available local ingredients and gardening. Through a generous donation from AIDS Orphan Care, children with mild malnutrition are provided with peanut butter to improve their diet and nutritional status. Infants and children are also provided with routine vitamin A supplementation and regular de-worming – national strategies to improve nutritional status.
The COE is proud to participate in the Lesotho Expanded Program for Immunizations (EPI) and provides routine childhood vaccines for our HIV-exposed and infected infants and young children.
Specialized Adolescent Clinic
Since May 2012, youth aged 14-20 years have received services from a dedicated team of professionals at the BCMCF-L Adolescent Clinic in Queen ‘Mamohato Memorial Hospital. Feedback from the adolescents has been quite positive. They enjoy having their own space and freedom to speak on relevant topics. We envision the Adolescent Clinic to serve as a natural transition to adult care services.
Also, deeper relationships are built as the adolescents repeatedly interact with a smaller team of health care providers. We have been able to better identify and assist those who are struggling to take their medications correctly. A nutritionist and psychologists hold weekly clinics to provide additional services. Two peer educators have also been identified and trained to address the unique needs of adolescents living with HIV.
Adolescents living with HIV (ALHIV) have unique health needs. Recent research has demonstrated that adolescent-friendly services that foster peer support help ALHIV effectively transition to adulthood (Pettitt et al. 2013). BCMCF-L provides adolescents with a specialized program of care and treatment to help ensure successful treatment outcomes during this challenging life stage.
BCMCF-L also has full-time psychological staff to consult patients presenting with mental health problems or concerns. Some common referrals are related to depression, learning disabilities and behavior problems. Children who have been victims of sexual abuse are often referred for counseling from nearby facilities as few facilities have full-time psychologists.
BCMCF-L believes in holistic HIV treatment which cares for the whole person. This necessitates programs which address the psychosocial needs of our child and adult patients. Currently we run three major psychosocial support programs for various types of patients:
Teen Club supports HIV positive youth aged 11-18 years old and meets monthly at our COE and SCOEs. The mission of Teen Club is to empower HIV-positive adolescents to build positive relationships, improve their self-esteem and acquire life skills. Teen Club strives to ensure improved clinical and mental health outcomes for our adolescents as well as a healthy transition into young adulthood through peer mentorship, adult role modeling and structured activities. Currently, there are over 900 active Teen Club members across Lesotho.
In 2012, a Wise Ones group for youth 18-24 years old was formed at our COE to provide continued life skills support for youth that have graduated Teen Club and remain patients of Baylor. The Wise Ones meet once a month to share in educational and recreational activities and attend Teen Clubs to facilitate activities and to serve as positive role models and mentors for the younger teens. Plans are being developed to begin similar youth groups in other sites.
Caring Fathers is a support group for men who have HIV-infected family members. The program encourages men to get tested, to access treatment and to support their families. Caring Fathers meets monthly at the COE and is led by one of our social workers.
Training & Education
BCMCF-L conducts clinically relevant operational research, assisting in the care of children at the COE, SCOEs and throughout Lesotho. Our research into outcomes and best practices supports our mission to continually improve and thoroughly understand what works best in caring for children with HIV, TB and malnutrition in our country’s unique setting. Results from any research conducted are used to improve care at the COE, throughout Lesotho and in other countries.
Ongoing Medical Audit
As Lesotho looks forward to achieving its goals regarding the HIV pandemic, it is of crucial importance to look critically back at our achievements—including in the clinical arena—and to use any lessons learned in refining future plans, especially in regards to the care of children infected or affected by HIV. BCMCF-L is currently conducting a comprehensive medical audit of clinical and monitoring and evaluation records maintained at the COE and SCOEs between December 2005 and December 2013.
The main purpose of the audit is to learn from our experience in managing children with HIV with a view to improve the care being provided and to inform health policy as it relates to the care of children in Lesotho. A secondary objective is to share any appropriate findings with the wider health and medical fraternity.
Past and Ongoing Research
All BCMCF-L research studies are approved by the Research Ethics Committee of the Ministry of Health, in-country Institutional Review Board (IRB) and Baylor College of Medicine IRB. Examples of past and ongoing research topics include:
Evaluation of the Lesotho Emergency Triage Assessment and Treatment (ETAT) Training Project
A Prospective Evaluation of Clinical Outcomes and Determining Baseline Factors of Clinical Outcomes of HAART in the Pediatric Population of BIPAI Children’s Centers of Excellence in Africa
A Prospective Comparison of Adherence to HAART amongst Adolescent Patients of the BIPAI Children’s Centre of Excellence before and after Attendance at Recreational Therapy Camp
Needs Assessment for Development of a General Pediatrics Nurse Training Curriculum in Lesotho
A Retrospective study to Evaluate the Effects of Isoniazid Preventative Therapy on Anemia in HIV-infected Children
Comparison of the Effectiveness of using a single drug Zidovudine versus a 3-drug combination therapy for Prevention of Mother-to-Child-Transmission of HIV at Baylor College of Medicine Children’s Foundation Clinical Center of Excellence-Lesotho
Medical School Partnership
In 2014, Lesotho’s Ministry of Health founded its first medical school. BCMCF-L has been requested to support the education of medical students, specifically in pediatrics. We are grateful for the opportunity to support the professional development of future Basotho physicians and pediatricians. More information to come as this partnership develops.
Patient Home Visits
Patients who miss clinic appointments and fail to return for care are traced using a combination of phone calls and physical visits to their homes by a team of nurses, social workers and trained volunteers. Over the last year, nearly 2,000 patients were called or visited to ensure retention in care. This resulted in dramatic reductions in patients who are lost from care and therefore receive inadequate treatment. The volunteers also visit households affected by TB to find additional cases.