| GBGM > Health & Welfare Ministries > HIV/AIDS Focus Papers |
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Cathie Lyons is the associate general secretary for Health and Welfare Ministries, General Board of Global Ministries, The United Methodist Church.
Contents: HIV and Children: Modes of Infection | HIV Infection: The Maternal Link | Female AIDS Cases | From Mother to Child | Ten Metropolitan Areas with Most Pediatric HIV Disease | Clinical Manifestation of Pediatric HIV Disease | Pediatric AIDS in the US | The Needs of Children, Families and Care Providers | Programs Reaching Out to Women, Children, and Families | Prevention of HIV Infection | Screening Blood | Prevention of Perinatal (Mother-to-Child) Transmission | HIV-Infected Children: At Home, School, and in Day Care | Things Churches Can Do | PWA Column: Earthly Attachments |
"The epidemic of HIV infection and related illnesses worldwide is no respecter of age, background or culture. Nor is it a crisis which affects individuals in isolation from one another. This is particularly true with regard to HIV infection and children. In the vast majority of instances, HIV infection in an infant indicates that the infant's mother is infected, also, as might be the child's father and some of the child's siblings."
The epidemic of HIV infection and related illnesses worldwide is no respecter of age, background or culture. Nor is it a crisis which affects individuals in isolation from one another. This is particularly true with regard to HIV infection and children. In the vast majority of instances, HIV infection in an infant indicates that the infant's mother is infected, also, as might be the child's father and some of the infant's siblings. The reality of HIV infection in children speaks to the need for family wide services, community-wide AIDS prevention education for all age groups, and effective drug prevention and treatment programs which are sensitive to ethnic/racial group concerns and which are designed to serve women and youth, as well as men.
In the United States, as of January 1, 1990 a total of 1,995 cases of AIDS among children under 13 years of age had been reported to the federal government's Centers for Disease Control (CDC) in Atlanta. Fifty-four percent of these children have died since diagnosis.
Of the total reported cases of pediatric AIDS (birth through 12 years) five percent have been among children with hemophilia/ coagulation disorders who received HIV infected transfusions of the blood's clotting factor. Eleven percent have been among other children who received HIV infected transfusions of blood, blood components or tissue. In three percent of the cases the mode of virus transmission remains unknown.
The remaining eighty one percent of the children with AIDS in the United States have one thing in common. They were born to mothers who were infected with the Human Immuno-deficiency Virus (HIV) and who passed the virus to their babies before, during or shortly after birth. Seventy-two percent of these mothers, also, have something in common. They are IV drug users or the sexual partners of IV drug users.
The fastest growing group of children with HIV infection and related illnesses are infants who are being infected through perinatal, mother-to-infant transmission.
As of January 1st there were 10,611 cases of AIDS reported among women in the United States, seventy-six percent of which are among women in their prime childbearing years (age 13 to 39).
| Female AIDS Cases | ||
|---|---|---|
| Age at Diagnosis | Prime Childbearing Years | Age at Diagnosis - Total Cases (%) |
| Under 5 | 793 | (07) |
| 5-12 | 120 | (06) |
| 13-19 | 94 | (01) |
| 20-24 | 744 | (06) |
| 25-29 | 2,222 | (19) |
| 30-34 | 2,944 | (26) |
| 35-39 | 2,042 | (18) |
| 40-44 | 1,003 | (09) |
| 45-49 | 460 | (04) |
| 50-54 | 288 | (02) |
| 55-59 | 233 | (02) |
| 60-64 | 190 | (02) |
| 65 or older | 392 | (03) |
| Female total ** | 11,524 | (100) |
** Includes females of all ages.
There are no exact figures on the number of women who are infected with HIV, but the dramatic increase in the number of childhood/pediatric AIDS cases (66% of which have been diagnosed since November 1987) and the number of children infected with HIV reflects the increased incidence of infection among women of reproductive age.
Just as there is an overwhelming link between maternal infection and perinatal infection, so too is there a link between female infection and substance use.
Fifty-two percent of women who have been diagnosed with AIDS were/are IV drug users and an additional 19% were/are the sexual partners of IV drug users.
The triple tragedies of drug use, female infection, and maternal transmission of the virus were addressed at the 5th Annual Pediatric AIDS Conference last September by New Jersey State Commissioner of Health, Dr. Molly Joel Coye.
"The parallel epidemic that is fueling the HIV epidemic is drug abuse . . . . Despite the war on drugs and recent decreases in causal drug use, drug addiction is increasing, and threatens to erode our fragile gains against the transmission of HIV."
For how many years will the dual epidemics of drug addiction and HIV infection reign over the lives of families, their children and the children of their children? Dr. Martha Rogers of the Centers for Disease Control (CDC) AIDS Program summarizes the spiraling relationship of these interrelated realities in this way.
"A baby lucky enough to escape HIV infection and the effects of maternal drug abuse at the time of birth will grow up to face these problems again as an adolescent and adult. Those who become infected will give birth to the next generation of infected children."
Transmission of the virus can take place when the virus carried by the mother crosses the placenta to the fetus during pregnancy; during labor and delivery when the infant is exposed to the mother's cervical secretions and blood; and in some rare instances when -- through breast feeding -- the baby ingests HIV infected breast milk.
The determination of whether an infant born to an infected mother has been infected with HIV cannot be determined immediately after birth. The blood screening test which can detect antibodies to HIV does not distinguish between maternal antibodies and antibodies produced by the infant. Maternal antibodies can remain in the infant's system for up to 9 to 15 months.
Every day babies are being born who have been exposed to the Human Immunodeficiency Virus (HIV) in utero. Not all of these babies will become infected with the virus which their mothers carry, but some will: perhaps as many as thirty to sixty percent. How many of these infants will go on to develop AIDS or an HIV-related illness is not certain, but various sources predict that by age five, fifty to eighty percent could progress to illness.
At lease seventy eight percent of U. S. perinatal AIDS cases are among the communities of color (53% are Black, 25% are Hispanic, with Native Americans/Alaskan Natives making up less than 1 percent), while twenty two percent of the cases are White.
The following ten metropolitan areas account for a total of fifty five percent of the nation's pediatric AIDS cases.
** Rates of HIV infection among IV drug users in these cities is estimated at between 45 - 60%.
The infections and malignancies common to HIV-infection in children are different than in adults. In addition, "the progression of HIV disease differs in children who received infected blood products and children who were born to infected mothers.
"The progression of HIV infection in children who received infected blood products varies according to their age and what type of blood product they received. Children transfused in the newborn period become symptomatic within 6 months to 3 years after the transfusion. The progression of HIV disease from initial infection to onset of symptoms appears to be faster in those children who were transfused as very small premature babies."People with hemophilia who are HIV infected tend to develop more normally and remain at the asymptomatic stage of infection longer than perinatally infected infants. However, once these children progress to clinical AIDS, the course of the disease is similar to that found in perinatally infected infants."
Common childhood infectious illnesses are likely to be severe in HIV-infected infants. The APHA report on Pediatric HIV Infection points out that "as the infection progresses, infants can experience anemia, failure to thrive, fever, chronic diarrhea, and thrush. Adequate nutrition of HIV-infected infants can be an ongoing problem. Neurological involvement is common. Many children have significant central nervous system (CNS) manifestations of HIV infection as well as secondary bacterial and fungal infections of the central nervous system."
AIDS in children is a developmentally disabling disease, and a significant proportion of infected children show developmental delays prior to exhibiting other signs and symptoms of the disease.
Early intervention can reduce the impact of these delays. As the disease progresses, developmentally normal infants can become severely disabled, while others remain normal or relatively unimpaired at four, five and even ten years of age.
For every reported case of pediatric AIDS, as many as ten more cases of pediatric AIDS/HIV may actually exist.
In five years, one out of every ten pediatric hospital beds will be occupied by a child with AIDS.
If current trends continue, AIDS could be one of the top five causes of death in American children fourteen and under within the next four years.
In its Pediatric HIV Infection report the American Public Health Association highlights the fact that infants affected by the HIV epidemic fall into three groups.
Most infants and children with HIV-infection and AIDS are cared for in a home setting be it that of the natural family, the extended family or a foster or adoptive family. The needs of these children and their families can be great and are even more pronounced when the child's care provider parent is also HIV-infected and / or a substance user.
Families which are caring for one or more HIV-infected member need services and programs which are culturally and linguistically appropriate and which are committed to addressing family wide needs.
The health care and social needs of HIV-infected infants cannot be separated from the care needs of the family unit. These needs include the following.
Exemplary programs exist across the nation which are bringing support and relief to families coping with AIDS.
DARE Family Services -- Family Partnership Program (Somerville, MA) places an HIV-infected mother and her child in the home of a "mentor": a full-time, paraprofessional who provides 24-hour supervision and intensive personal care and support in her own home for the mother and the child for the duration of their lives. The program provides a model for keeping HIV-infected mothers and children together while assuring constancy of care and in-home living.
For information about DARE Family Partnership Program contact: Sharon Mainguy, Director of Development, DARE Family Services, 265 Medford Street, Somerville, MA 02143. (617) 629-2710 or 1-800-253-1114 (toll free).
Starcross Community (Santa Rosa, CA) provides the full spectrum of services to children with AIDS and their families: services to high risk women on the streets and in jails; practical and emotional family support; and when all else fails, foster care and adoptive placement in a network of homes called "Morningchild Gathering". The work of the organization has received international attention after publication of the book, Morning Glory Babies: Children with AIDS and the Celebration of Live.
For more information contact: Starcross Community, P.O. Box 14279, Santa Rosa, CA 95402. (707) 886-5446 or (707) 526-0108.
The Positive Women's Group of the Pediatric AIDS Program at Children's Hospital of New Orleans is a support group for pregnant women and mothers who are HIV infected.
The group was conceived as a way to provide emotional support, education, and a sense of community for women who have to face their own infection and the possibility of infection in their children. The women have formed a network of support and friendship helping each other cope with their feelings of guilt as well as their fear of illness and death for themselves, their children and their partners.
For more information write: Ann R. Marten, Case Manager, Children's Hospital, 200 Henry Clay Avenue, New Orleans, LA 70118. (504) 568-7041 or (504) 568- 7043.
The Child Care AIDS Network in Boston, MA organizes foster families with HIV-infected children into a respite care network. Participating families provide respite care for one another. The pilot project also recruits new foster families particularly those who are Black or Hispanic. A long-term goal is to open up the respite care network to biological families caring for HIV-infected children.
For information contact Pamela L. Whitney, Office of Special Projects, Massachusetts Department of Social Services, 150 Causway Street, Boston, MA 02114. (617) 727-0900.
The Infant and Child Learning Center at SUNY Health Sciences Center, Brooklyn, NY is an early intervention program devoted to HIV-infected children. It is one of a few programs nationwide that provides special education and physical, occupational, speech and language therapy for affected children. Mothers participate in support groups and have formed a network to assist one another and to speak out on the issue of pediatric AIDS. One year's experience with these children has shown amelioration of the milder developmental disabilities which are among the early signs of HIV infection.
For information contact Noelle Leonard, Box 1203, 450 Clarkson Avenue, Brooklyn, NY 11203. (718) 282-9781.
H.O.P.E. in Kansas (Helping Others through Partnership and Education) is a result of a partnership between the Salvation Army and Hospice of Wichita, the American Red Cross, local medical centers, the Urban League, and Kansas Social and Rehabilitation Services. HOPE provides licensed foster families who have 50 hours of specialized training, case managements services and supervision to any child who is HIV infected in any state who is in need of a family care system.
For information contact: H.O.P.E. in Kansas, The Salvation Army, Booth Family Service Center, Box 2037, 2050 West Eleventh Street, Wichita, KS 67201-2037. (316) 263-6174.
Pediatric AIDS Resource Center through the AIDS Program of Children's Hospital of New Jersey (CHAP) offers a range of services to professionals caring for children with HIV infection and their families. The purpose of the center is to provide health care professionals with: 1) information and materials for patient and family education about pediatric HIV infection; 2) guidance regarding organization and delivery of health care services; 3) assistance in developing community based services for HIV-infected children; and 4) consultation and technical assistance to organizations involved in the care of HIV infected children. The center provides a focal point for health care professionals and agencies to assist in provision of comprehensive, family-focused, community based care to children with HIV infection and their families.
To utilize the Center's services or for information contact the Pediatric AIDS Resource Center, Children's Hospital of New Jersey, 15 South Ninth Street, Newark, NJ 07107. FAX #: (201) 485-7769.
The ominous prediction that if current trends continue, AIDS could be one of the top five causes of death in American children fourteen and under within the next four years speaks to an urgent and tragic reality.
Pediatric and childhood HIV infection can be prevented, but it will take an all out effort to address the needs of those individuals whose behaviors put them at greatest risk of contracting and transmitting the virus. The report on Pediatric HIV Infection summarizes the task ahead.
The epidemic of HIV infection in children in the United States is one that is rooted in the problems of HIV infection in women, intravenous drug use, and male attitudes about sexual responsibility.
The strategies for reducing the transmission of HIV to children are not unique. Prevention of pediatric HIV infection can be accomplished by screening blood and preventing adult HIV infection.
Education, access to drug treatment, access to family planning services, use of barrier contraceptives, access to HIV antibody testing, and access to medical and social services are necessary components of HIV prevention.
In the United States, the screening of all blood for the presence of HIV antibodies began in 1985 and has significantly reduced the risk of HIV transmission through the blood supply. Though 16% of all pediatric AIDS cases are among children who became infected through the transfusion of blood or blood products, there have been no reported cases of transfusion-associated AIDS in children having been transfused in 1985 or after.
The number of transfusion-associated cases of AIDS in children will eventually decrease in the U.S. even though a small risk of HIV infection from screened blood and blood products exists. In a very few instances, screened blood will incorrectly test negative (and be available for use) even though antibodies are present.
The prevention of mother-to-child transmission of HIV requires risk reduction strategies which address the I.V. drug use and sexual behaviors of women and men alike.
Studies of families who are caring for HIV-infected members and of health care workers caring for patients reveal that HIV is not transmitted through casual (non-sexual, non-needle sharing) contact.
The American Red Cross and numerous community-based AIDS organizations provide training for families and others who are providing care to HIV-infected individuals in the home and other care settings.
Guidelines have been issued by the US Public Health Service on the care of HIV-infected children in day care, foster care, and school settings.
The risk of HIV transmission is rare in these settings, but it can occur if an individual with an open cut or skin tear were to come into contact with infected blood or possibly other body fluids.
Teachers, child care workers, and care providers can be trained in the simple precautions to take to protect oneself from coming into contact with HIV infected fluids as well as how to clean/disinfect areas which have been exposed to infectious blood or other bodily fluids.
There may be some risk to an HIV-infected child in the school setting if he or she is put at risk of exposure to contagious or infectious diseases. The assessment of risk is best made by the child's/infant's physician and family in consultation with the school's or organization's health official.
The opportunities for the church to be a place of openness in the midst of the AIDS crisis are many and take on special dimensions in responding to children with HIV infection and their families.
Churches should be the first place where families can turn for comfort, support and acceptance when the reality of AIDS comes home. The child's plea captured in the words on a poster "I Have AIDS: Please Hug Me--I Can't Make You Sick" is an invitation to become personally involved in loving and compassionate ministry with all persons whose lives have been touched by AIDS.
AIDS HOTLINE FOR KIDS
CENTER FOR ATTITUDINAL HEALING
19 MAIN ST.,
TIBURON, CA 94920
(415) 435-5022
The I HAVE AIDS poster available from the Center for Attitudinal Healing (14 Main Street, Tiburon, CA 94920, phone: 415-435-5022) is a starting point for responding with open arms to children with AIDS in the congregation and the community. It is also a useful tool to help children and adults move beyond their fears about being around children or grownups who have AIDS or HIV infection. Order the poster and use is as a reminder that HIV cannot be transmitted through casual contact.
If your church has a nursery, a day care program, or children's events would children with HIV infection be accepted? Invite a representative from the American Red Cross to talk with your pastor and program people about these and other ways to serve children and families.
Some of the needs of HIV-affected families have been listed in the foregoing. Congregations can address some of the needs after becoming informed about the situations of families and children in the community.
PWA columnist, Terry Boyd, has been hospitalized three times this year. During the last quarter of 1989, Terry submitted numerous columns to the Network Office to be included in subsequent Focus Paper. His outpouring of thoughts and insights about living with AIDS and dealing with its many realities bring Focus Paper readers to a deeper understanding of the most personal and intimate side of AIDS. In the following piece on "Earthly Attachments", Terry talks about death and separation, his faith and how hard it is to say goodbye.
by Terry L. Boyd
"After all, doesn't my religion teach that I should not become too enamored of impermanent, imperfect things in this life?"
Toward the beginning of my journey with AIDS, I spent considerable time thinking about death in general. When I felt fairly comfortable, I spent some time thinking about my own death in particular. Just when I thought I had reached a rather uneasy peace with death, I realized that I had developed certain earthly attachments that I would simply have to give up. I would not become vice-president at the bank. I would not win the lottery and become a world traveler.
Then, AIDS wrought its indelible changes on my life. AIDS did not just change my life, it transformed it. From an early age, I had wanted to write. My first faltering attempts were not met with great applause. Now, I am writing daily and people are actually reading what I write. I talk with my mother weekly and I am able to tell her that I love her. Some of the most brilliant and compassionate people in the world are those who are involved with AIDS and other social issues. Now, I can count some of them as my friends.
I was hospitalized recently. When I was released, I realized that this episode had done some permanent damage. Some vital piece had been taken away and I could feel its loss. In a follow-up visit with my doctor, he told me quite honestly that he was worried about me. He asked if I was scared. It took me fully two days to realize that, "Yes", I am scared. I am very scared. I also realize that I have replaced an old set of earthly attachments with a new set. I realize that I will eventually lose the ability to do the work I love so much: that I will have to say goodbye to my new, wonderful friends. And once again I find myself mourning. It is an overwhelming melancholy . . . a deep sadness. I have never known anyone with AIDS who has not required some time to mourn for oneself.
There is a song which is one of my all-time favorites. It is sung by Emmylou Harris and has the unmistakable flavor of the Ozark mountains and all of the rich religious tradition of that region. The title is "When He Calls." The refrain goes something like this: "When He calls, I'm gonna live with Jesus. In His kingdom He welcomes everyone. I shall fear no more earthly perils. He will carry me home."
It is difficult for me to listen to this song now. And when I do, the tears begin to flow. I have been caught several times by friends who are at once lovingly concerned but mystified by my behavior. They want to know, "What's wrong?"
How do I explain that I am mourning? How can I tell them that I will miss them and all of the beautiful things in this life?
How can I tell them how much I will miss coffee at sunrise and hymns on Sunday and lilacs in the Spring? How can I tell them how much I will miss their smile and their touch?
How do I tell them that I do not want to say goodbye?
Terry Boyd's PWA Column is a monthly feature of the AIDS Ministries Network Alert Focus Papers. Terry, 39 years old, is a member of Lafayette Park United Methodist Church in St. Louis, MO, the Missouri-East AIDS Task Force and the Interagency Task Force on AIDS Ministries. Terry, also, serves on the board of Doorways, a community-based AIDS service organization.
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The red ribbon and globe is a symbol of UNAIDS's Global AIDS Program, http://www.unaids.org.
HIV/AIDS Ministries Network Focus Papers are a publication of the Health and Welfare Ministries , General Board of Global Ministries, The United Methodist Church, Room 330, 475 Riverside Drive, New York, NY 10115. Phone: 212-870-3909. FAX: 212-749-2641. E-MAIL: aidsmin@gbgm-umc.org. Focus Papers, unless otherwise noted, may be quoted, reproduced and distributed with credit being given to Health and Welfare Ministries and the authors. These focus papers were written several years ago there some information is outdated.
The HIV/AIDS Ministries Network is a network of United Methodists and others who care about the global HIV/AIDS pandemic and those whose lives have been touched.
