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Questions & Answers
Should the person with hemophilia change or stop treatment with factor VIII or factor IX blood products?
No. Persons with hemophilia are urged not to withhold or delay treatment if it is needed. When early treatment is withheld, complications will develop that can lead to crippling and life threatening hemorrhages. These complications may require an increased use of factor. Any questions or concerns you may have over this issue should be discussed with your physician or treatment center staff.
Since more people have died from AIDS than from bleeding in persons with hemophilia, shouldn't the person with hemophilia stop using clotting factor concentrates and other blood products? HIV has now been virtually eliminated from clotting factor concentrates. Almost all HIV-infected people with hemophilia were infected by blood products used prior to 1985. Although it is not known how many of those already infected will develop AIDS, it is highly unlikely that there will be new cases of HIV infection transmitted by blood products in persons with hemophilia. Thus, decreased therapy with blood products will not reduce the number of AIDS cases among those who are already HIV-infected. Further, limiting therapy will increase the rate of both death and disability from bleeding.
Do new technology products offer protection from HIV? Yes. Newer viral inactivation procedures used on coagulation factor concentrates virtually eliminate their potential to transmit HIV infection. These viral inactivation procedures include dry heat, heating in an organic solvent, detergent treatment and monoclonal antibody purification methods. For this reason, NHF's Medical and Scientific Advisory Council has stated that currently available products have not been found to transmit HIV.
Are there specific recommendations for persons with mild or moderate hemophilia A and those with certain types of von Willebrand Disease (vWD)? NHF's Medical and Scientific Advisory Council recommends Desmopression (DDAVP) as all alternative to the use of blood products when possible . DDAVP is not made from human blood, but is a man-made substance. It is important to note that DDAVP cannot be used for every bleeding problem. If you want to learn more about the use of DDAVP you should talk to the physician who treats your hemophilia.
Should elective surgery be postponed? Before deciding to have any operation, the patient, in consultation with the physician, must decide if the potential benefits of that procedure are greater than the potential risks (risk/benefit ratio). In the person with hemophilia, the surgical risks are always somewhat higher than in a person whose blood clots normally. Concern about HIV should not prevent a person from having surgery.
Can one do anything to minimize the risk of developing AIDS once one is already infected with HIV ? At the present time, we are not sure why certain HIV-infected persons with hemophilia have developed AIDS while others have not. HIV destroys the immune system in infected persons at different rates over many years. Therefore, we cannot recommend any specific change in treatment or in lifestyles that will definitely lessen the risk of developing AIDS. However, AIDS does seem to be more likely to develop in individuals who have other health problems. Thus, anything you can do to maintain your health, such as eating a balanced diet, getting enough rest and exercising are basic to your general well being. AZT clearly has been shown to delay progression of AIDS in persons with late-stage HIV disease and in HIV- infected asymptomatic persons. It is important to know if you are infected with HIV, and if infected, what your CD4 lymphocyte values are. If they are below 500, you should definitely consider therapy with AZT. If they are below 200, you should also consider drugs to prevent pneumocystis carinii pneumonia. Both ddI and ddC are available to people who cannot take AZT. Clinical studies using other drugs are options for people with HIV disease and AIDS. The National Hemophilia Foundation is now an AIDS Clinical Trials Unit (ACTU), which means some government sponsored clinical trials are available through local treatment centers. Consult your treatment center for more information.
What should the person with hemophilia do if he notices any of the symptoms of AIDS or HIV Disease? AIDS and HIV disease are identified when different symptoms and diseases develop that do not normally occur. If symptoms or other unusual problems are noted, a physician should be consulted. Contact your hemophilia treatment center, where the care providers are familiar with the problems of both hemophilia and HIV infection. Treatment with AZT is indicated for many patients with HIV infection and AIDS and should be discussed with your doctor. You may also wish to talk with your physician about participating in clinical trials with experimental drugs.
What additional recommendations should be made to persons with hemophilia and their sexual partners concerning HIV disease? If you are HIV-infected, or have not been tested:
What are the risks in assisting in the infusion of concentrate? The risks to anyone assisting in infusion are very low, as long as good infection control techniques are always used. Contact with infected blood should always be avoided. Latex gloves should be worn by the family member during an infusion. Be careful and avoid needle puncture injuries. Never recap, bend or break needles after use. Dispose of used needles by putting them in puncture-resistant containers (hard plastic or metal) where children or unsuspecting persons could accidentally come in contact with them. Use hydrogen peroxide or a 10 % bleach and water solution to clean up blood spills. Hands should be washed thoroughly before and after an infusion. Follow the usual rules for good clean technique.
What are NHF's basic messages regarding HIV/AIDS to people with hemophilia? NHF's three basic messages are:
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