Some of the Basics
Questions & Answers
What is HIV?
HIV stands for human immunodeficiency virus. The
virus causes acquired immune deficiency syndrome
(AIDS) by damaging the immune system so that the
body can no longer fight off infections.
How is HIV spread?
HIV must enter the blood stream to be spread. Most
commonly, transmission occurs through vaginal, anal,
and/or oral sex. HIV also may be spread from an
infected mother to her offspring, through sharing of
needles by intravenous drug users, and in very rare
instances, from blood transfusions.
HIV infection and/or AIDS cannot be spread by
coughing, sneezing, sharing food, or other forms of
casual contact. It is not spread through ordinary daily
activities in the home, school, bathroom facilities,
workplace, or places of recreation and entertainment.
Why were people with hemophilia at risk for HIV
infection?
People with hemophilia used blood and blood products
to control bleeding episodes at a time (the early 1980s')
when these products were contaminated by HIV, the
virus that causes AIDS. Some blood donors had HIV
infection but had no symptoms.
These donors unknowingly contaminated the blood
supply. The result was that many people, including
more than half of this nation's persons with hemophilia,
developed HIV infection. Most of the contamination of
the blood supply occurred before the cause of AIDS was
discovered, and before a test to identify HIV-infected
blood was developed. It is believed that about 10,000
individuals with hemophilia are infected with HIV.
Are people with hemophilia still at risk for HIV
infection?
Blood-donor screening and the new technology
clotting products have virtually eliminated the risk of
transmission of HIV through blood products. Today's
clotting factors are treated to inactivate many viruses,
including HIV. Every donor is checked for HIV infection
before his/her blood is used. Most factor VIII and factor
IX concentrates currently marketed in the United
States are treated with wet heat (pasteurization) or
solvent-detergent mixtures. It is known that these
processes lead to the destruction of very large
quantities of viruses.
As of January 1991, no seroconversions have been
identified iii persons who exclusively received heat
treated, donor-screened products.
I feel healthy. Should I get tested for HIV?
Even though you feel well, if you are infected with
HIV, it is gradually destroying your immune system
during this asymptomatic (no symptoms)
phase, which can last for many years. Since
treatment is available to decrease progression to
AIDS, you should become an informed consumer.
Knowing your immune status and options are your
best weapons against this virus. Remember, AIDS
has already killed many people with hemophilia.
Confidentiality of test results is very important. Be
certain to discuss this with your physician.
If I am not HIV-infected, should I continue to get
tested each year? Why?
You are probably free of HIV infection if you have no
other risk factors and have used only the HIV-safe
clotting factors since 1985. If you have been tested
within the last year and are HIV negative you are in all
likelihood free of HIV infection. However, there are no
absolute guarantees and you should continue to get
HIV-tested each year to confirm this assumption. In
addition, regular testing of all negative patients will
continue to prove that the treatment concentrates are
safe.
What does it mean when I test positive for HIV?
It mans that you have been infected with HIV,
the virus that causes AIDS. When a person is
infected with HIV, his/her body usually produces a
protein that specifically recognizes the virus. That
protein is called an antibody. The presence of
these antibodies in blood indicates a positive test
for HIV.
HIV attacks the body's immune system, which
protects the body from infections. Many HIV-
infected persons have no symptoms for a long period of
time. This is because it usually takes many years before
the immune system is destroyed by HIV.
If you are HIV-infected you are also infectious and can
transmit HIV to others through sexual intercourse or
other risk behaviors, such as sharing needles.
What problems does HIV infection cause?
The problems that result from HIV infection vary.
Most people experience no symptoms at the time
infection occurs. Others may develop swollen glands and
fever soon after exposure to HIV. These symptoms go
away quickly in most people, but enlarged lymph nodes
(glands) may last. After months, or years, the immune
system is weakened and a number of symptoms may
manifest: excessive tiredness; swollen lymph nodes;
night sweats; sore throat; mouth infections; severe
diarrhea; and/or the unexplained loss of 10 percent or
more of body weight. This group of symptoms is
currently seen as indicative of later-stage HIV disease
(formerly referred to as AIDS-related complex, or ARC).
After HIV has destroyed the body's immune system.
an HIV-infected person often develops certain kinds of
"opportunistic" (unusual) infections or cancers, which
take advantage of the damaged immune system. All
AIDS diagnosis is made when the immune system can no
longer fight back against these infections.
How long does it take before an HIV-infected person
develops AIDS?
In very rare cases, it can be a few months, but
typically it is more than 10 years. Most persons
with hemophilia were infected between 1981 and
1984. Twenty-three percent have developed AIDS,
suggesting that the average time from HIV infection
to AIDS may be considerably longer than 10 years.
Treatment, using AZT (zidovudine), for
asymptomatic persons or persons in varying stages
of HIV disease can delay the onset of AIDS.
What can I do if I am HIV-infected?
A diagnosis of HIV infection, or of AIDS for that
matter, is extremely serious, but is not an
immediate "death sentence." With the help of
recent medical advances, HIV disease is gradually
becoming a manageable, chronic disorder.
However, the key to survival is early
intervention.
The disease process varies widely from person to
person. Like hemophilia, management of HIV
disease requires a great deal of active participation
on the part of the affected person. Right now,
medical science offers no definite ways of
predicting when an asymptomatic HIV-infected
individual will develop more serious disease.
Monitoring the immune system, through blood
tests, for the amount of destruction caused by HIV
is very important in predicting when a person is at
greatest risk of developing AIDS. Based on test results,
treatments can be initiated or adjusted to delay or
prevent certain infections.
How should I deal with HIV infection?
There is no singe "right" way to cope with serious
health threats such as HIV disease or a diagnosis of
AIDS. For some individuals, staying in close touch with
the latest developments in AIDS/HIV treatment
research is one way to gain control over an upsetting
situation. Others are more comfortable letting their
hemophilia treatment center do the worrying. But no
matter what stage of HIV disease you are in there are
now very real treatment options available. Some are
experimental, some are approved. And there is
information available to help you make treatment
decisions. The possibilities of successful management of
HIV disease are growing every day. Keep in mind, once
infected by HIV, people do not get better naturally or by
waiting. Thus, be informed, take control, and keep
healthy.
What is HIV-2?
HIV-2 is another type of HIV that can also cause
AIDS. So far it is largely confined to Third-world
cultures. In the United States no HIV-2 has been
transmitted by blood or blood products. Viral
inactivation currently used to destroy HIV, kills HIV-2
as well.
When is AIDS diagnosed?
Since 1987, a diagnosis of AIDS has been made when
an HIV-infected individual becomes ill with certain
unusual or opportunistic 'infections. These infections
occur following the loss of an individual's immune
system. HIV attacks certain human blood cells called
CD4 or T4 helper lymphocytes and destroys them over
time. Without these cells, the body is unable to fight
certain infections.
What is the difference between HIV infection, ARC,
HIV disease and AIDS?
AIDS-related complex (ARC), a term that is rapidly
becoming obsolete, has been used to describe the
condition of a person whose immune system is seriously
damaged, but who has not yet been diagnosed with AIDS
. Currently, the term ÒHIV disease" is used to describe
the entire spectrum of HIV, from asymptomatic
infection to the diagnosis of AIDS. When an individual
begins showing symptoms of HIV disease, the immune
system is badly damaged; there is a greater risk for
developing opportunistic infections and being diagnosed
with AIDS if he/she does not begin preventive
treatment.
AIDS may appear an average of eight to 11 years after
a person has been infected. Once diagnosed with AIDS,
some individuals have survived for as long as eight
years. Your active participation in the management of
HIV infection, beginning in the asymptomatic period,
when your immune system is only partially damaged, is
essential.
What causes death in persons with AIDS?
Opportunistic infections and/or cancers can kill
people with AIDS. Some of the infections most
commonly diagnosed are pneumocystis carinii
pneumonia (PCP), cytomegalovirus (CMV), candida,
toxoplasmosis, and lymphoma (a tumor of the lymph
glands). Complications of HIV infection itself can also
cause death through dementia (a decrease in the ability
to think) and wasting syndrome. These diseases attack
many bodily functions and are very difficult to treat.
Persons with hemophilia also appear to have problems
with the reactivation of chronic hepatitis, caused by
hepatitis viruses transmitted in clotting factor
concentrates. These viruses can attack the liver and
destroy it. Some, but not all, viral inactivation processes
for clotting factor concentrates destroy hepatitis
viruses.
How should I monitor my HIV infection?
At the present time there is no test to predict how
long it will take for HIV to destroy the immune system.
However, several tests can give an indication of immune
status and progression of HIV disease. The most widely
used test is the count of CD4 (T-helper) lymphocytes.
HIV attacks the CD4, or T-helper lymphocytes. These
white blood cells are important to the body's immune
response against infection. Without them, the rest of
the immune system cannot function properly. When an
individual's CD4 cells decline to lower than 200 per
cubic millimeter of blood (normal range 500-1,200 per
cubic millimeter), the risk of developing opportunistic
infections such as PCP increases
It is important to note that a trend of CD4 counts taken
over several months is more important than any one
single measurement.
Other markers, such as beta-2 micro globulin, p24
antigen, and neopterin may provide information on the
condition of the immune system. P24 antigen may
provide information on how much virus is circulating in
the blood stream.
Sometimes when I have a little cold or sore throat, I
think about AIDS and I get terribly upset. Am I losing
my mind?
No. It is perfectly normal to have periods of anxiety
or sadness about a real and serious worry such as HIV
infection. This is true not only for a person with
hemophilia but also for family members, who may have
a fear of becoming infected or a fear of the person with
hemophilia becoming sick. If this mental discomfort goes
on week after week and interferes with your ability to
function ore experience pleasure, it is time to seek help.
A good place to start is with your hemophilia treatment
center staff. They are prepared to answer your
questions and help you understand and reduce the
stress related to issues of HIV infection and AIDS. Many
NHF chapters are addressing this need among patients
and families by forming support groups in cooperation
with the treatment centers. Your concerns are
understandable and normal. The hemophilia treatment
centers and NHF chapters encourage you to share your
thoughts and questions with them.
I have been diagnosed with AIDS. How long will I
live?
Before the widespread use of AZT, persons with
AIDS usually lived one or two years. They died from
multiple bouts of opportunistic infections. AZT has been
shown to decrease the number of infections in persons
with AIDS. In addition, better antibiotics to fight the
opportunistic infections are now available, so persons
with AIDS are living longer, in rare cases longer than
eight years.
