History of CHAP's
The Children's Hospital AIDS Program (CHAP) at Boston Children's Hospital is New England's largest clinic of its type, treating approximately 130 children, teens and their families each year.
CHAP began in 1985 when little was known about HIV/AIDS and many HIV-infected children usually died within a few years.
During the past two decades, our multidisciplinary team has helped CHAP become an international leader in HIV and AIDS care and clinical research. Research pioneered by our team and others, as well as the success of anti-viral drugs, has transformed the disease from a death sentence to a manageable condition.
Today, few children in the United States die of AIDS, and the transmission rate from mother to child is 1 percent.
Our patients range in age from infants to young adults and the average age is 13 years old. Most of our young patients are on a strict treatment regimen and usually take three to 15 pills at precise times every day. If the virus becomes resistant to therapy or the child becomes more ill, we use more complex treatments until we find one that works.
Recently, pills combining two to three drugs have become available allowing some patients to take as little as one or two pills per day. Some medicines are available in liquid form for young children who cannot swallow pills.
Our multidisciplinary team is directed by Sandra Burchett, MD, MSc, and includes physicians, nurses, social workers, counselors/educators and nutritionists in the Division of Infectious Diseases.
Subspecialists in Cardiology, Gastroenterology, Hematology, Neurology, Psychiatry, Pulmonary and other areas are available to the team for further consultation.
We use the specialized skills of our team members to provide a wide range of AIDS-related services, including counseling, testing, diagnosis, treatment, education, mental health services, case management and referrals.
A major goal of our program is to strengthen community care by consulting with primary care providers who work with pediatric HIV infection in community settings.
We provide services to both inpatients and outpatients.
View our full range of services
The Children's Hospital AIDS Program (CHAP) at Boston Children's Hospital provides the following services:
- HIV counseling and testing: At the initial visit, after informed consent is obtained, we conduct confidential HIV counseling and antibody testing. Our senior staff report HIV test results to the child's parent or legal guardian and, with the appropriate consent, to the patient's primary and/or referring physician. We provide
follow-up testing and services as necessary.
- Clinical care and case management: With the patient's primary provider, we deliver ongoing clinical care, provide case management and make referrals to a large geographical service area. We provide medical, nursing and social services to monitor and treat patients, educate parents about home care and provide the family with all of the appropriate support.
- Outreach and Massachusetts Community AIDS Resource Enhancement (MassCARE) Program: We have established partnerships with community health centers in Massachusetts neighborhoods where the rates of AIDS- and HIV-infected women are high. The goals of MassCARE are to introduce highly specialized services into the community, increase access to HIV clinical trials for women and children and reduce the number of trips patients need to make to receive specialized services.
- Education: We meet with parents, foster parents and adolescents to discuss topics related to AIDS, such as possible symptoms, risky behaviors, such as IV drug use and unprotected sex.
- Mental health services: We provide a multicultural team of social workers to address the psychological needs of children and families. We offer crisis intervention, psychosocial assessments and ongoing counseling to help patients and families deal with coping, disclosure, depression, behavioral problems, addiction and bereavement.
- Clinical drug and vaccine trials: Children's is one of 24 pediatric institutions nationwide conducting research of investigational drugs and vaccines for both primary HIV therapy and prevention and treatment of infections. CHAP is also involved in several therapeutic and perinatal prevention vaccine studies.
- Adolescent HIV services: We provide adolescent HIV services both at Children's and in the community. We see HIV-infected and/or high risk adolescents for counseling, testing, treatment and clinical trials. In addition, the Boston HAPPENS Program provides outreach to high risk, HIV positive, homeless and/or street youth by professional and trained peer leaders.
CHAP Quilt Project
Children's News article on the quilt
Beginning in 2006, the Children's Hospital AIDS Program (CHAP) at Boston Children's Hospital has worked with patients' family members, friends and volunteers to create an annual AIDS Memorial Quilt.
The quilt, displayed for the public at Children's every December, was created to honor the lives of many of CHAP's young patients who passed away from the disease.
Prior to the discovery of effective HIV medications and recent advances in HIV/AIDS research, the majority of children with AIDS succumbed to the disease.
Unfortunately, many children who were followed in our program were diagnosed before live-saving treatments were discovered. Our records indicate that approximately 80 children from our program have passed away since 1985.
To honor and remember the lives of the children we have lost to the disease, we invite their family members and friends to create panels representing their deceased loved ones. Each panel is unique and heartfelt and reflects the memories they have of the child.
Our quilt project has been modeled after the national AIDS Memorial Quilt that was created in 1987.
History of the AIDS Memorial Quilt
On October 11, 1987, the AIDS Memorial Quilt was officially unveiled on the National Mall in Washington D.C. It covered a space larger than a football field and included 1,920 panels. Half a million people visited the Quilt that weekend.
The AIDS Memorial Quilt is a poignant memorial, a powerful tool for preventing new HIV infections and the largest ongoing community arts project in the world.
The Boston Children's Hospital Quilt will be an ongoing project and will be displayed every December 1, on World AIDS Day. If you would like to help us with our quilt or learn more about it, please contact us at 617-355-6832.
The Children's Hospital AIDS Program Quilt Project made possible by The Mannion Fund. Special thanks to:
Mabel Badger, Marjorie Dunn, Laine Gifford, Pat Hassed, Linda Lesyna, Jerry McDonough, Carol Packard, and Pat Paraboschi.
Additional thanks to:
Sandra Burchett, Sally Cheek, Fran Colon, Rachel Diness, Rosemary Galvin, Malvys Jaikaran, Nancy Karthas, Cathy Kneut, Jennifer Leach, Cynthia Levin, Lynne Lewis, Helen Mahoney West, Charlotte Mao, Cecilia Matos, Ken McIntosh, Jackie Miranda, Elizabeth Nolan, Michelle Papazian, and Mark Tourtellot.
Mental Health Care
The challenges of struggling with a life-threatening, highly stigmatized illness are profound for many HIV-positive patients in the Children's Hospital AIDS Program (CHAP) at Boston Children's Hospital.
Issues such as depression, bereavement, stress, medication adherence, school adjustment and teen sexuality can make it very difficult for our CHAP patients and their families. And when poverty is also part of the struggle, the challenge can be overwhelming.
Our caregivers reach out to children, adolescents, parents and guardians to help them cope with a variety of medical, emotional and financial issues. We also help them work with state and local agencies and assist them with any cultural and language barriers they may face.
| "Every one of our children has problems that go far beyond medicine; every one of them will deal with depression and adolescent issues."
CHAP Clinical Director, Sandra Burchett, MD
Our social workers
Our social workers are important members of the CHAP health care team. They provide a range of services to an ethnically diverse group of HIV-positive children, adolescents and families.
Their services include:
- adjustment to HIV diagnosis and illness
- bereavement/loss of loved one
- challenges of adolescence
- coping with life transitions
- disclosure of diagnosis
- emotional difficulties
- medication adherence
- parent-child conflict
- relationship problems
- school/academic adjustment
- sequelae (conditions resulting from a disease)
- sexuality and HIV
- spiritual questions
- stress management
- substance abuse
- Jacqueline Miranda, MSW, LICSW, program social worker
Phone: 617-355-6832 e-mail
- Francie Mandel, MSW, LICSW, clinical social worker
Phone: 617-355-6832 e-mail
- Malvys Jaikaran, resource specialist
Phone: 617-355-6832 e-mail