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HIV Program for Children and Youth

Overview | Especially for Teens

The Pediatric and Youth HIV Program includes:

Pediatric Clinic
A Pediatric Clinic, which is held every Tuesday morning from 8:30 am till noon. Children infected with HIV are seen by an Infectious Disease Specialist, Registered Nurses, a Dietitian, and a Social Worker and on most occasions, a dental hygiene student. 50% of the children seen in this clinic are perinatally infected with HIV and the other 50% are infants born to HIV infected mothers and followed for up to 18 months of age to determine their HIV status. During these 18 months, education and case management is offered to each family. The CCMC Pediatric and Youth HIV Program uses national standards in caring for the children with HIV and newborn infants exposed to HIV.

Transmission of HIV from mother to infant

Teen Clinic
The teen clinic is held on one Friday afternoon each month from noon till 4:30 pm. This clinic is unique in that it provides "one stop shopping" for each teen, coming in for care. An adolescent primary care provider sees each teen for his or her primary care needs, providing a holistic and caring approach to any of the health care needs. At the same clinic visit, the teens are seen by an Infectious Disease Specialist for the specialty care required for management of their HIV infection. A social worker is also there to meet with the young person to assist with emotional needs and social issues such as housing, or problems with jobs or school.

Research Clinic
The Connecticut Children's Medical Center is part of the Western New England Pediatric AIDS Clinical Trial Unit. The member hospitals in Western New England Clinical Trials Units are Baystate Medical Center in Springfield, Massachusetts and the University of Massachusetts Medical Center in Worcester, Massachusetts, which is a member of the Pediatric AIDS Clinical Trial Group of the National Institute of Allergy and Infectious Disease.

Our newest study, PACTG 1051, will determine the best dose of liquid Tipranavir and gel caps for children and adolescents. Like many protease inhibitors, Tipranavir will be boosted with ritonavir. Tipranavir is the first of a new class of HIV drugs called nonpeptide protease inhibitors (NPPI’s). This study is also open to children and adolescents who have already taken other HIV medications. We are in the final stages of preparation to begin this exciting research.

Currently we are carrying out the following studies:

PACTG 390 or PENPACT1 is a cooperative effort between the PACTG and the European Collaborative (This is a huge study). The aim of the study is to try to find out what is the best treatment strategy for children and infants who are beginning HIV treatment. Should the initial treatment be one which includes a protease inhibitor or one which is protease sparing? Would baseline viral load levels influence which treatment combination is a better choice? And at what point would a switch be best? When a child's viral load just begins to increase again (1,000 copies) or wait until the viral load is higher (30,000)?

PACTG 1020A. This study looks at the new protease inhibitor, Atazanavir. This study is trying to find the best dose for the drug and evaluates the safety and tolerance of the drug. This study is particularly unique and well suited to the population of HIV infected children who have failed previous treatment. Unlike most studies of new HIV medications, these treatment-experienced children may be allowed to enroll in this study if they show sensitivity (are not resistant to) Atazanavir and at least two nucleoside analogs.

PACTG 1021 is the study of a once per day dosing regimen consisting of ddi, efavirenz and a new drug called emtricitabine. This is a dose finding study and also investigates the safety of the combination in children. Most HIV regimens for children have many pills or lots of yucky tasting liquid given 2 to 4 times per day. This regimen is one of the simplest regimens available.

PACTG 219C is the long-term follow-up study for children exposed to antiretroviral treatment during the prenatal period and/or throughout life. This study looks at the growth and development, health status, neurological status, and quality of life of subjects up to age 24.

PACTG 367 is a chart abstraction study of women, and their newborns, who have taken antiretroviral treatment during the prenatal and neonatal periods. This study is collecting information regarding outcomes of these pregnancies in the hope of spotting trends in antiretroviral use during pregnancy as well as any trends in adverse effects, should they occur.

We are approved to carry out another study which looks at the efficacy, safety and tolerance of Nitazoxinide tablets for the treatment of cryptosporidiosis diarrhea, which has not been alleviated by other treatments. Cryptosporidiosis diarrhea can be a life threatening condition for children with HIV.

The CCMC program has also recently taken part in the following studies:

PACTG1028S is a sub-study of 219C, which looks at the frequency of Hepatitis C among perinatally infected children. The PACTG is also storing blood samples to look at the frequency of Hepatitis G.

PACTG 1024 studies the use of the vaccine, Prevnar, in HIV infected children. Prevnar is a new pneumococcal vaccine, which is approved by the FDA and is currently used in the routine infant immunization. The study also looks at the use of extra "booster" vaccines in HIV infected children- Hepatitis B, DTaP, MMR, Pneumovax. The hypothesis is that with the advent of successful HIV treatment and the subsequent improvement and strength of the children's immune system, that these children can have a better immune response to these vaccines now than when they were infants and toddlers.

Parent Child Clinic
Parent Child Clinic is held on two Friday afternoons each month from noon until 4:40 pm. This clinic is also unique in that mothers and children with HIV infection can each receive their HIV specialty care at the same time in the same clinic. The children are seen by an Infectious Disease Specialist and the mothers are seen by either an adult Infectious Disease Specialist from either Hartford Hospital or the University of Connecticut Health Center. Each family is seen by a nurse, a dietician and a social worker, based on their needs on that day.

The Adherence Program
The Medication Adherence Program is provided through a partnership with Interim Health Care in Farmington, Connecticut. A Registered Nurse, certified in AIDS Care provides supports and education to families through home visitation. She helps families develop strategies to adhere to the often multitude of medications required to treat HIV infection. She will often visit the families with their case manager to coordinate services with medication adherence education and provide interpretation for Spanish speaking families.

Case Management and Family Support
The Case Management and Family Support component of the Pediatric and Youth HIV Program is part of the Ryan White Programs and has a strong collaborative relationship with the Connecticut Primary Care Association (CPCA), CPCA Kids. Experienced caseworkers, hired through the University of Connecticut Health Center, provide medical case management to both infected children and affected family members. Two important goals of their care are to identify obstacles that limit access to health care and to look for solutions that will abate these barriers. The team is diverse, has bilingual and bi-cultural skills and everyone involved has extensive experience working with infected and affected families. As a team, we are committed to working together and developing long-term relationships with our clients ands their families in order to assure quality and uninterrupted care.

 

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