Human Immunodeficiency Virus (HIV)
HIV became an issue in the hemophilia community when the disease emerged in the early 1980s.
Signs and Symptoms
Many people will not have any symptoms when they first become infected with HIV. They might have a flu-like illness within 1 to 2 months after exposure to the virus, and symptoms can include
- Enlarged lymph nodes
These symptoms usually disappear within a week to a month and are often mistaken for those of another viral infection.
Acquired immunodeficiency syndrome (AIDS) applies to the most advanced stages of HIV infection. People diagnosed with AIDS include all HIV-infected individuals who have fewer than 200 CD4+ T cells per cubic millimeter of blood. In addition, there are 26 clinical conditions that affect people with advanced HIV disease. Most of these conditions are opportunistic infections that generally do not affect healthy people. Among people with AIDS, these infections are often severe and sometimes fatal because their immune systems are so impaired by HIV they can no longer respond to certain bacteria, viruses, fungi, parasites, and other microbes.
HIV is spread by sexual contact with an infected person; by sharing needles or syringes (primarily for drug injection) with someone who is infected, or less commonly, (and now very rarely in countries where blood is screened for HIV antibodies), through transfusions of infected blood or blood clotting factors. Babies born to women infected with HIV can become infected before or during birth or through breastfeeding after birth.
Because no vaccine for HIV is available, the only way to prevent infection by the virus is to avoid high-risk behaviors, such as sharing needles and having unprotected sex. Many people infected with HIV have no symptoms. Patients should be advised to either abstain from having sex, or use male latex condoms or female polyurethane condoms, which can offer partial protection, during oral, anal, or vaginal sex. Only water-based lubricants should be used with male latex condoms. Although some laboratory evidence shows that spermicides can kill HIV, researchers have not found that these products can prevent HIV infection.
There are a number of approved drugs for treating HIV infection. Because HIV can become resistant to any of these drugs, a combination of drugs is used to suppress the virus. When multiple drugs (three or more) are used in combination, the regimen is referred to as “highly active antiretroviral therapy,” or HAART. HAART is used to treat patients who are newly infected with HIV, as well as patients with AIDS. While HAART is not a cure for AIDS, it has greatly improved the health of many AIDS patients, and it reduces the amount of virus circulating in the blood to nearly undetectable levels. Researchers, however, have shown that HIV remains in the lymph nodes, brain, testes, and retina of the eye, even among people who have been treated.
During the early years of HIV infection, among those with hemophilia, many patients experienced anxiety, fear, denial, and loss, and many delayed future life plans. In the 1990s, many individuals with hemophilia, who were also infected with HIV, experienced a shift in their emotional reactions. While denial remained a common coping strategy, shifts in responses included feelings related to survivor guilt, grief and anger, resulting in increased activism and a sense of empowerment. Since 1996, the long-term success of HIV treatment and drastic reductions in death rates have enabled many individuals with hemophilia who were infected with HIV to be more hopeful about their future. In addition, two settlements to individuals with hemophilia who were also HIV infected, one from industry and the other from the government (Ricky Ray Act), helped to diffuse some of the anger in the community. The effect and significance of HIV are still very much with these adults; however, for those who are well with their HIV, it typically does not overwhelm their lives in the way it once did, and many have renewed hope about their future. The majority now view their HIV as a chronic, not a terminal illness.