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Questions & Answers
Should I have my child with hemophilia tested for HIV antibodies?
Yes. As with adults, testing children for HIV antibodies is very important to determine if they are infected, and if infected, how much immune system damage has been done. Confidentiality of test results is important to prevent discrimination. Be aware of laws in your state before you agree to have your child tested. If possible, go to an anonymous test site for HIV antibody testing to ensure that your results are not disclosed without your knowledge.
My child was born after the development of donor screening and heat treatment, Is my child at risk for HIV infection or AIDS?
It is highly unlikely that your child is at risk. In an NHF/CDC international study of newborn hemophilic children using donor- screened, heat-treated products since 1984, none of the children have developed HIV antibodies.
My child was born before 1984. Is s/he at risk for HIV infection or AIDS?
Yes. If your child received blood products before 1984, he/she might have been exposed to HIV. Your child should be tested for HIV to deter-nine if he/she is infected, because treatment options are available. Studies indicate that there is slower progression to AIDS in persons infected when they were children or teenagers.
If my child has a positive HIV antibody test, does this mean he/she has AIDS.?
No. Having antibodies to HIV means that your child has HIV disease or is HIV-infected. Over many years HIV destroys the immune system of the body. When the immune system is destroyed or opportunistic infections have developed, the person is, diagnosed with AIDS.
If my child is HIV-infected or has been diagnosed with AIDS, what treatment is available?
AZT is now FDA approved for the treatment of AIDS and late-stage HIV disease in children, and for asymptomatic children with CD4 cells less than 500 per cu.mm. The National Hemophilia Foundation encourages parents to contact their treatment center physicians to obtain information regarding current HIV therapy for their children.
What precautions should I take in my home if my child is HIV- infected?
Several hundred household contacts of HIV- infected persons with hemophilia have been tested and are not infected with HIV. Therefore:
Household members need to be encouraged to talk with each other about any concerns regarding the spread of HIV. This helps to develop and maintain healthy family relationships.
What should I say to those who care for my child?
In addition to the regular educational material on hemophilia you have provided for your child's caretaker, if necessary, share NHF's school policies and acceptable CDC hygienic procedures as stated in AIDS Update: Chapter Advisory #35, "The National Hemophilia Foundation's Panel Concludes that School Attendance by Children with AIDS Presents No Risk, November 18, 1985. Also, you should ensure that routine hygiene procedures including good hand- washing and careful cleanup of blood spills are practiced in the school and day-care facility. Realizing that questions concerning hygiene are being raised in the school setting, NHF suggests the following recommendations from the Centers for Disease Control:
Do children transmit HIV to other children?
No. No child has ever acquired the disease in any other way than from his/her infected mother before birth, from breast milk after birth, or from blood products or transfusions. HIV has not been transmitted by casual contact or through bleeding from a sports injury. In order to possibly infect someone else, the blood of the child with HIV infection would have to be introduced directly into the blood stream of another person through mucous membranes or open skin sores. Blood transfusions and HIV-contaminated needles shared by IV (intravenous) drug users are the ways HIV may be introduced into the blood stream. This is not the same thing as external contact with blood, as might occur in a sports injury.
Where can I get help if my school district discriminates against children with HIV infection or AIDS?
Contact your NHF chapter, treatment center staff and/or your local civil rights office as soon as you sense there may be a problem. They will be familiar with state and local resources. While there are federal laws prohibiting certain forms of discrimination, school attendance policies are made by individual (local) school districts. Your treatment center and your local NHF chapter should be able to help you because they understand the local attitudes and community situation in which you live. Since there is no medical evidence that HIV/AIDS is spread casually, there is no reason for a child to be excluded from his classroom if he is physically able to attend school.
Should I talk to my child, who has hemophilia, about HIV and AIDS?
Yes. As a child becomes old enough to understand hemophilia, it is important to talk also about HIV and AIDS. Most children cannot avoid hearing about AIDS today. Also, children are sensitive and can sense their parents' concerns. Your own calm approach to this situation will help your child with any uncomfortable feelings. By talking with your child, in understandable words, you can find out what your child knows about AIDS and if he/she has any incorrect information. A youngster's fantasies about AIDS may cause undue fear or upset. By encouraging your child to talk, you will be providing the chance for your child to express fears and concerns and feel supported. Your other children may also have some concerns that you can address by encouraging them to ask you questions. If you are uncomfortable discussing AIDS, remember that your treatment center staff is available to speak with all family members.
How can I help my child with hemophilia and my family cope with feelings of isolation and contagion?
It is important to acknowledge that this is a difficult time for those living with hemophilia. Everyone will respond to this stress in his or her own way. Many people you meet will not know the facts about the transmission of HIV and AIDS. Community misunderstanding can create feelings of loneliness, isolation and outright discrimination.
There are ways to cope with this situation. Remember how you learned to cope with and adjust to the stresses of hemophilia? Use these past experiences to gain control of your HIV infection, Keep up-to-date on HIV/ AIDS treatment research and what you need to do to stop HIV transmission. Feel comfortable asking others for support and allow open discussion among family members about AIDS. Remember, your chapter and treatment center staff are available to discuss your questions and concerns and to help educate the community.
My child has HIV infection. Should he be immunized like other children?
Yes. Centers for Disease Control recommends that children with HIV infection receive the normal sequence and number of childhood immunizations to protect them from viral and bacterial diseases. If you are in doubt, or your child is being given a "live" vaccine, consult your hemophilia treatment center physician.
For further information. request from NHF:
AIDS Update: Medical Bulletin #100, Immunization for
Persons With HIV Infection, December 22 1989.
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