Children, Adolescents, and HIV/AIDS
Children, Adolescents, and HIV/AIDS
HIV/AIDS IN CHILDREN—DIFFERENT FROM HIV/AIDS IN ADULTS
HIV causes AIDS in both adults and children. The virus attacks and damages the immune and central nervous systems of all infected people. But the development and course of the disease in children differs considerably from its progression in adults.
Before the use of highly active antiretroviral therapy (HAART) and early intervention strategies, there were two patterns of HIV progression among children. The first pattern, which is called severe immunodeficiency, is apparent as recurring serious infections or encephalopathy (a disease of the brain). Severe immunodeficiency develops in 15 to 20% of infected infants during their first year of life. The second pattern of HIV progression, which occurs in the other 80 to 85% of infected children, is more gradual and is similar to the development seen in adults.
HIV nucleic acid detection tests can detect the presence of HIV in nearly all infants ages one month or older. Prior to the development of these tests, detecting HIV infection, especially in babies, was difficult. This is because the earlier tests involved the detection of antibodies formed by the infant in response to HIV. But infants have often not developed the full capacity to produce antibodies at the time of testing. Furthermore, HIV-infected mothers may transmit antibodies alone, without the virus, to their babies. In the latter instance, infants with positive results from antibody tests at birth may later test negative, indicating that the mother transmitted the HIV antibodies to the baby, but not the virus itself.
In adults, symptoms of fully developed AIDS include the presence of opportunistic infections (OIs) that may or may not be accompanied by rare forms of several types of cancers. The OIs or the cancers can ultimately prove to be the cause of death. The most common diseases associated with AIDS in adults are Pneumocystis carinii pneumonia (PCP) and Kaposi's sarcoma. The latter is a normally rare skin carcinoma that is capable of spreading to internal organs. Many adult AIDS patients have one or both of these conditions. Other disorders found in adult AIDS patients are lymphomas (lymph gland cancers), prolonged diarrhea causing severe dehydration, weight loss, and central nervous system infections that can lead to dementia.
Among infants and children, the disease is characterized by wasting syndrome, the failure to thrive, and unusually severe bacterial infections. With the exception of PCP, children with symptomatic HIV infection rarely develop the same OIs that adults contract. Though adults and children with HIV may both suffer from chronic or recurrent diarrhea, its dehydrating effect may be particularly debilitating and life-threatening to children. Instead of other symptoms common to adults, children are plagued with recurrent bacterial infections and persistent or recurrent oral thrush (an infection of the mouth or throat caused by the fungus Candida albicans ). Children may also suffer from enlarged lymph nodes, chronic pneumonia, developmental delays, and neurological abnormalities. Tragically, the immune system of HIV-infected children is destroyed even as it matures.
Whether HIV-positive or not, babies born to HIV-infected mothers appear to be predisposed to a variety of heart problems. In a study published in the journal The Lancet in June 2002, Steven Lipshultz et al. at Harvard Medical School examined more than five hundred infants born to HIV-positive women. They discovered that the babies suffered from abnormalities, such as defects in the heart wall and valve and reduced pumping action. These defects occur in less than 1% of healthy children whose mothers are not infected with HIV. Lipshultz and his colleagues recognize that HIV alone did not necessarily cause these anomalies. A mother's alcohol, drug, or nutrition problems, they observe, can also interfere with fetal heart development.
A CASE DEFINITION FOR CHILDREN
Because there was limited data during the first few years of HIV's acknowledged presence in the United States, the Centers for Disease Control and Prevention (CDC) definition of AIDS did not differentiate between adults and children until 1987, when the classification system was revised. The CDC updated the pediatric definition in 1994 and again in 1999 as more information about HIV and AIDS became available. The revisions, which remain current in 2005, are intended to:
- Reflect the stage of disease for an HIV-infected child
- Balance simplicity and medical accuracy in the classification process
- Establish mutually exclusive classification categories
As summarized in Table 5.1, HIV-infected children are classified clinically using a series of categories that range from the absence of symptoms (N1) to a severe manifestation of the symptoms (C3). The symptoms used in these classifications relate to the evidence and degrees of suppression of the immune system. The diagnosis and case definitions of HIV infection in children are based on a number of test results and HIV infection definition criteria in mutually exclusive categories according to three parameters: infection status, clinical status, and immunologic status. (See Table 5.2, and Table 2.3 in Chapter 2.)
As of December 1999 the diagnostic criteria for HIV infection in children eighteen months or younger
|Pediatric HIV classificationa|
|Immunologic categories||Clinical categories|
|N: No signs/symptoms||A: Mild signs/symptoms||B:b Moderate signs/symptoms||C:b Severe signs/symptoms|
|aChildren whose HIV infection status is not confirmed are classified by using the above grid with a letter E (for perinatally exposed) placed before the appropriate classification code (e.g., EN 2)|
|bBoth Category C and lymphoid interstitial pneumonitis in Category B are reportable to state and local health departments as acquired immunodeficiency syndrome.|
|Source: "Table 1. Pediatric Human Immunodeficiency Virus (HIV) Classification," in "1994 Revised Classification System for HIV Infection in Children Less Than 13 Years of Age; Official Authorized Addenda: Human Immunodeficiency Virus Infection Codes and Official Guidelines for Coding and Reporting ICD-9-CM," in Morbidity and Mortality Weekly Report: Recommendations and Reports, vol. 43, no. RR-12, September 30, 1994|
|1: No evidence of suppression||N1||A1||B1||C1|
|2: Evidence of moderate suppression||N2||A2||B2||C2|
|3: Severe suppression||N3||A3||B3||C3|
|Diagnosis of HIV infection in children*|
|*This definition of HIV infection replaces the definition published in the 1987 AIDS surveillance case definition (10).|
|Source: "Box 1. Diagnosis of Human Immunodeficiency Virus (HIV) Infection in Children," in "1994 Revised Classification System for HIV Infection in Children Less Than 13 Years of Age; Official Authorized Addenda: Human Immunodeficiency Virus Infection Codes and Official Guidelines for Coding and Reporting ICD-9-CM," in Morbidity and Mortality Weekly Report: Recommendations and Reports, vol. 43, no. RR-12, September 30, 1994|
|a) A child <18 months of age who is known to be HIV seropositive or born to an HIV-infected mother and:|
|• has positive results on two separate determinations (excluding cord blood) from one or more of the following HIV detection tests:|
|— HIV culture,|
|— HIV polymerase chain reaction,|
|— HIV antigen (p24)|
|• meets criteria for acquired immunodeficiency syndrome (AIDS) diagnosis based on the 1987 AIDS surveillance case definition (10)|
|b) A child >18 months of age born to an HIV-infected mother or any child infected by blood, blood products, or other known modes of transmission (e.g., sexual contact) who:—|
|• is HIV-antibody positive by repeatedly reactive enzyme immunoassay (EIA) and confirmatory test (e.g., Western blot or immunoflurescence assy [IFA]);|
|• meets any of the criteria in a) above.|
|Diagnosis: Perinatally exposed (prefix E)|
|A child who does not meet the criteria above who:|
|• is HIV seropositive by EIA and confirmatory test (e.g., Western blot or IFA) and is <18 months of age at the time of test:|
|• has unknown antibody status, but was born to a mother known to be infected with HIV.|
|Diagnosis: Seroreverter (SR)|
|A child who is born to an HIV-infected mother and who:|
|• has been documented as HIV-antibody negative (i.e., two or more negative EIA tests performed at 6-18 months of age or one negative EIA test after 18 months of age);|
|• has had no other laboratory evidence of infection (has not had two positive viral detection tests, if performed);|
|• has not had an AIDS-defining condition.|
requires positive results from HIV nucleic acid testing, HIV p24 antigen testing for children one month or older, or the actual isolation of HIV using viral culture-based methods. (See Table 2.3 in Chapter 2.) Prior to the availability of HIV nucleic acid detection tests, which do not rely on the detection of antibodies, cases of HIV infection in infants were difficult to diagnose accurately. This is because using tests to identify anti-HIV antibodies, which move through the placenta into the fetus, can complicate diagnosis of HIV infection in children born to infected mothers. Almost all children born to HIV-infected mothers test positive for the HIV antibody at their birth, even though only 15 to 30% are actually infected. In uninfected babies the HIV antibody usually becomes undetectable by nine months, although it may remain detectable for up to eighteen months.
There are three categories of HIV-infected children: those younger than eighteen months who are perinatally exposed (acquired the virus from their mother); children older than eighteen months with perinatal infection; and infants and children of all ages who acquired the virus through other types of exposure.
Children Younger Than Eighteen Months
The screening and confirmatory blood tests that accurately diagnose HIV in adults are not reliable for detecting HIV in children younger than eighteen months old because of the presence of passively acquired maternal antibodies. Early recognition of HIV infection in infants younger than eighteen months is accomplished using polymerase chain reaction (PCR), a test that amplifies amounts of viral genetic material to detectable levels, by the direct isolation of the HIV virus using viral culture techniques, or by the detection of the p24 viral antigen. These tests can identify 30 to 50% of infected babies at birth and almost 100% by three to six months of age. Those who are HIV-antibody positive and asymptomatic (without symptoms) without immune abnormalities have an HIV infection status that cannot be determined unless a virus culture or other antigen-detection test is positive. As with any diagnostic test, accuracy of detection is not absolute. The test does not detect 100% of people who are HIV-positive. Low levels of virus may escape detection. This possibility of a "false negative" result means that a negative culture does not necessarily rule out an infection. A small percentage of people who are infected with HIV can produce a negative result on testing.
Infants and children who are known to have been perinatally exposed (in other words, their mother is known to be HIV-positive) but who lack one of the diagnostic criteria for HIV infection should be observed further for HIV-related illnesses and tested at regular intervals. The U.S. Public Health Service recommends that all infants of HIV-infected mothers be given the drug zidovudine (ZDV) for six weeks and that HIV-infected mothers be warned about the risks of transmission through breastfeeding. Infants with negative HIV tests at birth should be retested periodically during the first eighteen months of life. Studies suggest that ZDV therapy does not influence the accuracy of virus detection tests and consequently does not delay diagnosis of HIV infection.
HIV infection in older children is defined by one or more of the following:
- Identification of the virus in the blood or tissues
- The presence of HIV antibodies (positive screening plus confirmatory test), regardless of the presence of immunologic abnormalities or symptoms
- Confirmation that symptoms meet the previously published CDC case definition for HIV infection
More than 90% of the cumulative totals of children younger than thirteen who have been reported to have HIV infection through 2003 were infected perinatally. A number of factors are associated with an increased risk of an HIV-positive mother passing the infection to her fetus. They include low CD4+ T cell count, high viral load (the concentration of virus in the blood), advanced HIV progression, presence of a particular HIV protein (p24) in serum, and placental membrane inflammation. Intrapartum (at the time of birth) events resulting in increased exposure of the fetus to maternal blood, breastfeeding, low vitamin A levels, premature rupture of membranes, prenatal use of illicit drugs, and premature delivery also increase the risk of mother-to-fetus transmission. The risk of perinatal transmission also increases when the mother does not know she is infected until late in the course of the illness.
Despite these potential routes of transmission, the number of HIV-infected infants has been declining, probably as a result of the more widespread use of HAART to prevent pregnant women from passing HIV infection to their offspring. Planned cesarean section delivery (C-section), the presence of neutralizing antibodies in the mother, and timely antiviral drug therapy (such as with ZDV) further reduce the chances of mother-to-infant HIV transmission.
There is evidence that planned C-section, the procedure where a fetus is delivered by surgical removal from the womb, together with the administration of ZDV, may prevent some cases of mother-to-baby HIV infection. C-section delivery does not expose the fetus to potentially HIV-contaminated vaginal tissue.
Even without a C-section, drug therapy can be beneficial. In the United States and Western Europe the number of babies born with HIV infection has been reduced 50% by giving infected pregnant women and their newborns ZDV. Before widespread use of ZDV, about five hundred American babies per year, nearly all of them either African-American or Hispanic, were infected with HIV from their mothers. By 2003 there were only 147 reported cases of mother-to-child transmission in the United States. Worldwide, nine thousand babies are born annually who are infected with HIV. Infection usually occurs during the last stages of pregnancy, most often during labor and delivery. There is evidence in the scientific literature that planned cesarean delivery, together with the administration of ZDV, may prevent more cases of mother-to-baby HIV infection.
TREATMENTS FOR CHILDREN
Prescribing drug therapy for children is often more difficult than prescribing for adults because children respond to drugs differently at different ages and because oral medication must have an acceptable taste to children so that they will take it as prescribed.
As of January 2004 twelve antiretroviral drugs had been approved for pediatric HIV patients by the U.S. Food and Drug Administration (FDA). Of these, four drugs called protease inhibitors (PIs; used alone or in combination with other drugs to combat viral infection) were available to children two to thirteen years old. They are nelfinavir, ritonavir, amprenavir, and lopinavir/ritonavir. PI compounds act by preventing the reproduction of HIV that is already in the host cells.
Another group of drugs approved for pediatric use are known as nucleoside analogs (NAs). NAs, which are structurally similar to a nucleoside constituent of DNA, limit HIV replication by incorporating themselves into a strand of DNA, which causes the chain to end. The NAs presently approved for pediatric use (the initial FDA approval is denoted in parentheses; this date in some cases pre-dates the approval for pediatric use) are:
- Zidovudine (ZDV), sold under the brand name Retrovir (1987)
- Didanosine (ddI), sold under the brand name Videx (1989)
- Lamivudine (3TC), sold under the brand name Epivir (1995)
- Stavudine (d4T), sold under the brand name Zerit (1994)
- Abacavir Succinate, sold under the brand name Ziagen (1998)
Another group of antiretroviral drugs are known as nonnucleoside reverse transcriptase inhibitors (NNRTIs). NNRTIs slow down the functioning of the enzyme that allows the virus to become a part of the infected cell's nucleus. Two NNRTIs are presently approved for pediatric use:
- Nevirapine, sold under the brand name Viramune (1996)
- Efavirenz, sold under the brand name Sustiva; in Europe efavirenz is sold under the brand name Stocrin (1998)
In 2003 the drug Enfuvirtide was approved for use by children over the age of six. This drug is the first of the fusion inhibitor class of antiretroviral drugs. It acts by inhibiting the fusion of HIV to the host cell membrane.
In March 1996 the Antiviral Drugs Advisory Committee of the FDA approved the use of the compound didanosine (ddI; brand name Videx) for pediatric use. The drug was developed and is marketed by Bristol-Myers Squibb Pharmaceuticals. The approval was based on the results of two separate U.S. AIDS Clinical Trials Group pediatric studies (one of which was the largest controlled pediatric trial to date) and an Australian study, all of which found that Videx delayed the progression of AIDS and was superior to ZDV alone. ZDV, which is given to children and adults, had been the only drug widely recognized to help delay the progress of HIV infection and to reduce the risk of perinatal infection.
The study results generated high expectations for the performance of Videx in both children and adults. Indeed, the Videx and combination therapies were so much more effective than ZDV alone that the AIDS Clinical Trial Group prematurely discontinued the ZDV-only therapy portion of the study. As promising as these early reports seemed, the effectiveness of Videx alone or in combination with ZDV was short lived because HIV susceptibility to the drugs decreased over time. Thus, while Videx is still used, it has not been a major breakthrough in HIV infections as was hoped.
In 1999 a study conducted jointly between the United States and Uganda demonstrated that the perinatal transmission of HIV from mother to child could be reduced by the drug nevirapine. The drug is given to the mother in labor and to the child within three days of birth. Initial study results showed the drug to be safe for both mother and child and relatively inexpensive ($4 per mother/child dose). In 2000 the Elizabeth Glaser Pediatric AIDS Foundation, a nonprofit organization dedicated to promoting and funding worldwide pediatric AIDS research, secured funds to implement this treatment in developing countries that lack health care resources and infrastructure.
By 2003 the administration of nevirapine to hundreds of thousands of pregnant women in Africa demonstrated the therapeutic potential of the drug in slowing the progression of pediatric AIDS. The World Health Organization (WHO), governments throughout sub-Saharan Africa, and the U.S. National Institutes of Health have all recommended that nevirapine use be continued to prevent HIV transmission from mothers to infants.
HOW MANY CHILDREN ARE INFECTED?
Of the 35,301 cases of HIV infection reported in the United States in 2003, 459 were diagnosed in children younger than thirteen. (See Table 5.3.) The CDC estimates that between six thousand and seven thousand infants every year are born to HIV-infected women in the United States. Of the ninety pediatric HIV cases reported in 2003, fifteen of which were diagnosed with AIDS, sixty-two cases (representing 69% of the total) were in African-American children. (See Table 3.11 in Chapter 3.)
|Reported cases of HIV infection, by age category, transmission category, and sex, cumulative through 2003|
|2003||Cumulative through 2003*||2003||Cumulative through 2003*||2003||Cumulative through 2003*|
|Note: Includes only persons with HIV infection that has not progressed to AIDS.|
|*Includes persons with a diagnosis of HIV infection (not AIDS), reported from the beginning of the epidemic through December 2003. Cumulative total includes 7 persons of unknown sex.|
|Source: "Table 18. Reported Cases of HIV Infection (Not AIDS), by Age Category, Transmission Category, and Sex, Cumulative through 2003—United States," in HIV/AIDS Surveillance Report: Cases of HIV Infection and AIDS in the United States, 2003, vol. 15, Centers for Disease Control and Prevention, 2004, http://www.cdc.gov/hiv/stats/2003SurveillanceReport.pdf (accessed July 18, 2005)|
|Adult or adolescent|
|Male-to-male sexual contact||10,466||46||72,745||48||—||—||—||—||10,466||32||72,745||34|
|Injection drug use||2,551||11||19,652||13||1,355||14||11,480||18||3,906||12||31,133||14|
|Male-to-male sexual contact and injection drug use||732||3||8,623||6||—||—||—||—||732||2||8,623||4|
|Sex with injection drug user||307||1||2,272||1||628||6||5,901||9||935||3||8,173||4|
|Sex with bisexual male||193||2||1,757||3||193||1||1,757||1|
|Sex with person with hemophilia||6||0||25||0||12||0||174||0||18||0||199||0|
|Sex with HIV-infected transfusion recipient||15||0||116||0||14||0||175||0||29||0||291||0|
|Sex with HIV-infected person, risk factor not specified||1,681||7||10,256||7||3,189||32||20,476||32||4,870||15||30,732||14|
|Receipt of blood transfusion, blood components, or tissue||26||0||477||0||61||1||539||1||87||0||1,016||0|
|Other/risk factor not reported or identified||7,003||31||38,053||25||4,543||45||23,174||36||11,546||35||61,233||28|
|Child (<13 years at diagnosis)|
|Mother with the following risk factor for, or documented, HIV infection:||170||74||1,898||83||152||66||2,000||87||322||70||3,898||85|
|Injection drug use||19||8||516||23||23||10||518||23||42||9||1,034||23|
|Sex with injection drug user||14||6||197||9||8||3||196||9||22||5||393||9|
|Sex with bisexual male||3||1||26||1||2||1||18||1||5||1||44||1|
|Sex with person with hemophilia||0||0||2||0||0||0||7||0||0||0||9||0|
|Sex with HIV-infected transfusion recipient||0||0||6||0||0||0||5||0||0||0||11||0|
|Sex with HIV-infected person, risk factor not specified||58||25||422||19||34||15||483||21||92||20||905||20|
|Receipt of blood transfusion, blood components, or tissue||1||0||17||1||1||0||16||1||2||0||33||1|
|Has HIV infection, risk factor not specified||75||33||712||31||84||37||757||33||159||35||1,469||32|
|Receipt of blood transfusion, blood components, or tissue||2||1||24||1||2||1||27||1||4||1||51||1|
|Other/risk factor not reported or identified||53||23||252||11||75||33||270||12||128||28||522||11|
Age at Diagnosis
In 1999 the CDC reported that more than 90% of children with AIDS acquired the disease perinatally and were diagnosed before they were five years old. Four percent were exposed through transfusions, 3% had hemophilia/coagulation disorders, and 2% had no identified or reported risk factors.
In 2003 the CDC-reported geographic distribution of the rate of pediatric and adult/adolescent AIDS cases per one hundred thousand population was very similar, with a higher prevalence in New York (10.5 for pediatric AIDS and 417.9 for adult/adolescent AIDS), Florida (12.8 and 301.9), Pennsylvania (6.1 and 145.4), and New Jersey (19.0 and 214.2). In other states the prevalence of both pediatric and adult/adolescent AIDS was lower, such as in Alaska (1.5 and 52.3), Maine (1.6 and 46.2), Montana (0 and 22.8), North Dakota (1.0 and 10.5), South Dakota (0.7 and 16.5), and Nebraska (1.3 and 41.6).
Worldwide, HIV infection is particularly prevalent in developing countries that lack health care infrastructure, according to the Elizabeth Glaser Pediatric AIDS Foundation. The foundation claims that such countries may have HIV infection rates among pregnant women as high as 25 to 40%. Because these women do not have access to prenatal medical care, prevention programs, and other health care, their babies have a 15 to 30% chance of becoming infected.
SOME CHILDREN BEAT THE VIRUS
Although very rare, infants born to HIV-positive mothers, and who themselves are initially infected with the virus, can subsequently become HIV-negative, develop immunological tolerance to the infection, or segregate the virus in lymphatic (located in the lymph nodes) tissue, where it remains dormant.
The molecular underpinnings of this resistance mechanism, if that is indeed what it proves to be, are as yet unknown. Scientists still do not know the mechanism that triggers this apparent HIV-positive to HIV-negative reversal. Interest in people who convert from HIV positive is high because by identifying the mechanism by which HIV-positive infants clear the virus may help to develop more effective treatments, including immunization against HIV infection.
Gene Mutation in Some Babies May Help
A gene mutation that slows the progress of HIV in adults was shown in the late 1990s to help HIV-infected newborns avoid serious AIDS-associated illnesses longer than those who do not have the mutation. The gene, called CC chemokine receptor 5 (CCR5), is present in 10 to 15% of whites but is not found in Asians or blacks.
The gene codes for a protein called CCR5. This protein and another one called CXCR4 are located on the surface of a number of human cells. An article in the May 2003 edition of the Journal of Virology demonstrates that CCR5 and CXCR4 can be used as receptors by HIV-1 to enter and infect CD4+ T cells, dendritic cells, and macrophages. Furthermore, CCR5 was shown to be essential for viral transmission and replication during the early phase of the disease, even before symptoms of infection appear. Researchers anticipate that further investigation of the CCR5 gene will eventually help them to develop drugs to prevent or destroy HIV in newborns.
HIV-POSITIVE WOMEN HAVING BABIES
Many HIV-positive women who have babies are not aware of their HIV status. Even when pregnant women learn that they are HIV-positive they often decide to continue the pregnancy despite the risk of passing the infection to their babies. Some women choose to become pregnant already knowing that they are infected with HIV. Many people consider HIV-positive women who decide to have babies to be selfish and unconcerned with the potentially tragic consequences of their actions. Still others regard the decision as strictly personal and understandable. The choice an HIV-positive woman makes to give birth can reflect an optimism that is fostered by effective drug therapies and a new reality—many people with HIV infection are living longer, more comfortably, and asymptomatically.
The choice to bear children also reflects societal and environmental realities, as well as attitudes about death and illness. Most women with HIV/AIDS live in poverty; they do not have easy access to medical care, and socioeconomic problems such as violence, homelessness, separated families, and low literacy rates challenge children's chances of leading long, safe, and healthy lives. Tracie M. Gardner, an AIDS policy analyst for the Federation of Protestant Welfare Agencies, believes that for many women in poor communities HIV infection is the least of their problems. Gardner tells the story of a pregnant inner-city woman in her early twenties who, when told she was HIV infected and had ten years to live, replied that this was nine more years than she thought she had.
LIVING LONG ENOUGH TO KNOW
Surviving into Their Teens
When children who are fifteen to seventeen years old in the early 2000s were born, much less was known about HIV/AIDS. With increased understanding of the disease has come the development of strategies that are increasing the outlook for those infected with HIV. Officials at the CDC report that most children infected from birth now survive beyond age five. CDC statistics from 2001 indicate that 3,923 children (those children up to age twelve) in the United States were HIV-positive. While many HIV-infected children die as infants and toddlers, it is not uncommon for others to reach their teens.
Medical experts distinguish three distinct patterns of disease progression among HIV-infected children. The first group consists of approximately one-quarter of those infected who display symptoms within their first eighteen months following infection. Even with treatment, progression to AIDS in this group is more rapid than for the other two groups. Children in the second group experience a less aggressive progression and often have milder or less prolonged symptomatic periods of symptoms. These children tend to live to be about three to five years old. The third group is a recently emerging group of survivors. These children have grown up with few, if any, symptoms. Some were not diagnosed until they were nine to eleven years old. From New York City, where more than one-fifth of the nation's pediatric AIDS cases reside, there are reports of children as old as fourteen who were infected at birth but remained asymptomatic and undiagnosed. Researchers are understandably eager to determine why these children remain asymptomatic in spite of their infection.
Dealing with Physical and Emotional Problems
When HIV-infected children died in the early years of the AIDS epidemic, they were generally unaware of what was happening to them. Today, at the Children's Evaluation and Rehabilitation Center of the Albert Einstein College of Medicine's Rose Kennedy Center in the Bronx, school-aged children meet with social workers in a support group to handle the physical and emotional ordeals of growing up with HIV and AIDS. These children are part of the increasing number born with HIV who have survived long enough to realize what it means. They must learn to cope with the physical, psychological, and emotional consequences of HIV/AIDS.
HIV-positive children deal with problems unique to their situations—a mother's death from AIDS, keeping their disease a secret from classmates at school, the fear of dying, and coping with the deaths of members of their support group. Other concerns range from the dread of having their teeth pulled (because HIV-positive people's teeth decay unusually quickly) to the taunting the children receive at school because they may be short and underweight. Discussions range from what heaven is like to practical advice about taking ZDV in capsules rather than the bitter liquid form. When asked by a visitor what he wanted to be when he grew up, one child in a support group responded, "I never think about it."
One More Problem
Many children who are HIV-positive do not know it. In some cases their parents or foster parents have tried to protect them and do not want them to know. Others fear that the children will not be able to keep the news from other children, teachers, and neighbors. Some parents do not tell their children for fear the children will blame them for passing on the infection. Just as poignantly, many who do know keep their illness a secret even from their siblings. For those who know about their condition, HIV/AIDS is one more hardship in a life often made difficult by poverty, instability, and the loss of loved ones—especially parents. A child whose mother died from AIDS when he was five years old was understandably bitter about the fact that he was the only one of three siblings to be infected.
WHO WILL CARE FOR THEM?
The HIV/AIDS epidemic has created many tragedies, including millions of orphans. The World Health Organization in Geneva, Switzerland, estimates that by the end of 2000 there were more than thirteen million children worldwide orphaned by parents who died of AIDS. According to U.S. experts, forty million children worldwide will lose one or both parents to AIDS between 1997 and 2010. In Africa alone, during 1999 there were more than eight million AIDS orphans and one million HIV-positive children.
It is not always possible to find someone to care for an orphan of parents who died of AIDS, particularly if the child also has HIV or AIDS. Some family members may be hesitant to take in the child for fear he or she may spread the infection. In a growing number of cases, however, grandparents (in most cases, grandmothers) are taking these orphans into their homes. This may be a burden on older people who have lost their own children and may feel too old, tired, or impoverished to rear another family. They may also fear that they will die before their grandchildren do, leaving no one to care for them. It is no less difficult for the children who have lost their parents and fear they will probably miss the advantages they would have had with younger parents, such as being able to play more active childhood games.
Older orphans struggle with the rage, shame, and isolation of losing a parent to AIDS. Observers are finding that the AIDS epidemic is creating a class of particularly troubled youth. All children who lose a parent suffer to some degree, but for those whose parents die from AIDS, embarrassment and secrecy often compound the trauma. Teens whose parents became infected as a result of injecting drugs or practicing unsafe sex are often torn between feeling sorry for their parents and blaming them for their illnesses.
ADOLESCENTS, YOUNG ADULTS, AND HIV/AIDS
Patterns of Infection
The transmission and course of AIDS among adolescents and adults follow similar patterns. In 2003 male adults and adolescents were infected primarily as a result of male to male sexual activity (MTM; 48%), unidentified exposure (22%), or intravenous drug use (IDU; 15%). Female adults and adolescents, on the other hand, became infected through IDU (20%), unidentified activity (34%), or heterosexual contact (45%).
The characteristics of adolescence—a time of development, uncertainty, and a misleading sense of bravado and immortality, often combined with pushing the boundaries of good sense—create the potential for some young people to become particularly vulnerable to HIV infection. For many, this is a time of experimentation and risk-taking, often in terms of sexual behavior or use of alcohol and illicit drugs. Some adolescents, struggling with their sexuality, may engage in homosexual encounters away from home but maintain and engage in heterosexual relationships in their neighborhoods to avoid suspicion.
Clinics for Homeless and Runaway Youth
In the early 1990s the CDC conducted anonymous surveys at clinics and shelters for homeless young people and runaways to gather information about risk behavior. Despite the anonymity of the surveys, the prevalence of certain behaviors, such as male to male sexual contact and intravenous drug use, were probably underreported because most teens are reluctant to admit to such behaviors. Nonetheless, the prevalence of recorded HIV risks was quite high.
Four to 28% of all male clients at four clinics for homeless and runaway youth had a history of MTM contact. This risk behavior accounted for 25 to 95% of all HIV infections among males at each clinic. Heterosexual women without a history of IDU accounted for 66 to 100% of the HIV infections among women, implying that infection came from contact with infected partners. Surprisingly, IDU was responsible for relatively few HIV infections; fewer than 2% of clients at three clinics and 17% at one clinic reported IDU. Only six of the 103 (6%) HIV-positive clients at the four clinics that conducted the risk surveys reported intravenous drug use.
Most Adolescents Are Sexually Active
Even though the growth rate of HIV/AIDS has slowed in the United States, the rate among young Americans continues to rise. Most HIV cases among youth have been spread sexually. According to the CDC, approximately three-fourths of adolescents who become infected with HIV are heterosexual females and adolescent males who engage in MTM.
Adolescents are having sex more frequently and earlier than ever before. According to the CDC, in 1999, 11.7% of ninth graders reported that they had engaged in sexual intercourse before the age of thirteen, and 38.6% of them revealed they had sexual intercourse by the ninth grade. In 1999, 65% of high school seniors reported that they had engaged in sexual intercourse.
Additionally, about one-fourth of teenagers (23%) also reported having had sex with four or more partners. Among sexually active students, fewer than half (46%) had used a latex condom during their last sexual intercourse.
SEXUALLY TRANSMITTED DISEASES
Teenagers engaging in sexual activity before becoming sufficiently mature, together with ineffective contraceptive methods, have led to record high rates of sexually transmitted diseases (STDs) among heterosexuals. Of the estimated twelve million new cases of STDs in the United States each year, three million (25%) occur among thirteen- to nineteen-years-olds. According to the CDC, about one out of five Americans twelve and older has an STD; most in this group are unaware they are infected.
Although overall rates of infection for some STDs, such as gonorrhea, declined during the 1990s, gonorrhea infections among African-Americans increased by more than 5% from 1997 to 1999, and infection with genital herpes also increased. The CDC publication "STD Surveillance 2003" reported that gonorrhea infection rates among African-Americans were twenty times higher than those among whites. More than one out of five Americans is estimated to have genital herpes infection, with teenage African-American women being especially vulnerable.
Studies and health education programs in the early 2000s have focused on teaching African-American teens ages fourteen to eighteen about the relationship between consistent condom use and the prevention of STDs. But condoms are less effective in halting the spread of genital herpes than other STDs because herpes may be transmitted from parts of the body not covered by a condom.
LEADING THE WAY: YOUNG PEOPLE AS AIDS ACTIVISTS AND ORGANIZATIONS THAT HELP YOUNG PATIENTS
Almost since the beginning of the epidemic, children and teenagers have been among the activists campaigning for HIV/AIDS reforms and awareness of the disease. Their role has been a profoundly personal one. For example, until his death from AIDS on April 8, 1990, Ryan White—an Indiana teenager—generated worldwide attention to the disease and, in particular, to the stigmas and misconceptions surrounding it. White, who contracted the virus during treatment for his hemophilia, was a white, middle-class heterosexual boy, which ran counter to public perception at the time of AIDS as a disease of gay men.
Being expelled from school because of the supposed health risk to other students galvanized White to educate others on the nature of HIV and AIDS. His legacy includes the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, the multi-billion-dollar program that funds programs to help provide primary health care and support to those living with HIV/AIDS. As of 2005 the $2.1 billion Act is under threat due to federal government budget cuts.
An organization called AIDS Alliance for Children, Youth & Families (www.aids-alliance.org/aids_alliance/index.html) was established in 1994 to publicize the concerns of women, children, young people, and families who are affected by HIV/AIDS. The nonprofit organization is also a clearinghouse for relevant information and advocates for public policy changes in the areas of HIV/AIDS social welfare and disease prevention.
The National Association of People with AIDS (www.napwa.org), founded in 1993, advocates for people, including children, who live with HIV/AIDS. The nonprofit organization—the oldest national AIDS organizations in the United States—is a strong advocate for HIV/AIDS social programs and research funding.
MetroTeenAIDS (www.metroteenaids.org) is a Washington, D.C.-based organization that focuses on prevention, education, and treatment needs of teenagers. Through its Web site and in-person contact at schools, nightclubs, youth centers, shelters, and on the street, MetroTeenAIDS connects with teenagers in language that is relevant to them. The intent is to help teenagers protect themselves from the risks of HIV exposure and contamination, and in securing medical care for HIV infection and AIDS.
MetroTeenAIDS has been working in conjunction with numerous other youth and AIDS activists groups since 1994 to host annual conferences around the country that focus on educating young people about HIV and AIDS. In 1995 the conference became known as the Ryan White National Youth Conference on HIV and AIDS (RWNYC). In 2001 the first Positive Youth Institute—a one-day gathering specifically focusing on the needs of HIV-positive young people—was held prior to and in conjunction with the RWNYC. Each year approximately six hundred young people, health care workers, and AIDS activists attend the Conference (http://www.rwnyc.org/overview.htm).