HIV and Its Treatment: What You Should Know
These fact sheets are intended for use by people recently diagnosed with HIV infection or those who are considering starting HIV treatment. The fact sheets are designed as a series but may be used as stand-alone documents. Information in these fact sheets is based on Guidelines for the Use of Antiretroviral Agents in HIV-Infected Adults and Adolescents, developed by the Panel on Clinical Practices for the Treatment of HIV Infection, which is convened by the U.S. Department of Health and Human Services (DHHS) in conjunction with the Henry J. Kaiser Family Foundation.
The Guidelines, which is a "living document," provides updates in new advances in the treatment of HIV. The current version of the document is available on the AIDSinfo Web site:
http://aidsinfo.nih.gov/guidelines/.
For more information: Contact your doctor or an AIDSinfo Health Information Specialist at 1-800-448-0440 or
http://aidsinfo.nih.gov/.
TABLE OF CONTENTS
Testing HIV Positive Do I Have AIDS?
Seeing an HIV Doctor
Starting Anti-HIV Medications
Recommended HIV Treatment Regimens
Approved Medications to Treat HIV Infection
Is My Treatment Regimen Working?
HIV Treatment Regimen Failure
Changing My HIV Treatment Regimen
What is Treatment Adherence?
Adhering To My HIV Treatment Regimen
HIV and Pregnancy
Understanding HIV Prevention
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Health Information for Patients
Fact Sheet #1
Testing HIV Positive Do I Have AIDS?
I tested HIV positive. What does this mean? Does it mean I have AIDS?
A positive HIV test result means that you are infected with HIV (Human Immunodeficiency Virus), the virus that causes AIDS (Acquired Immune Deficiency Syndrome). Being infected with HIV does not mean that you have AIDS right now. However, if left untreated, HIV infection damages a persons immune system and can progress to AIDS.
What is AIDS?
AIDS is the most serious stage of HIV infection. It results from the destruction of the infected person's immune system. Your immune system is your body's defense system. Cells of your immune system fight off infection and other diseases. If your immune system does not work well, you are at risk for serious and life-threatening infections and cancers. HIV attacks and destroys the disease-fighting cells of the immune system, leaving the body with a weakened defense against infections and cancer.
Which disease-fighting cells does HIV attack?
CD4 cells are a type of white blood cell that fights infections. They are also called CD4+ T cells or CD4 T lymphocytes. A CD4 count is the number of CD4 cells in a sample of blood. When HIV enters a person's CD4 cells, it uses the cells to make copies of itself. This process destroys the CD4 cells, and the CD4 count goes down. As you lose CD4 cells, your immune system becomes weak. A weakened immune system makes it harder for your body to fight infections and cancer.
How will I know if I have AIDS?
AIDS is not a diagnosis you can make yourself; it is diagnosed when the immune system is severely weakened. If you are infected with HIV and your CD4 count drops below 200 cells/mm3, or if you develop an AIDS-defining condition (an illness that is very unusual in someone who is not infected with HIV), you have AIDS.
What are the AIDS-defining conditions?
In December 1992, the Centers for Disease Control and Prevention (CDC) published the most current list of AIDS-defining conditions*. The AIDS-defining conditions are:
Candidiasis
Cervical cancer (invasive)
Coccidioidomycosis, Cryptococcosis, Cryptosporidiosis
Cytomegalovirus disease
Encephalopathy (HIV-related)
Herpes simplex (severe infection)
Histoplasmosis
Isosporiasis
Kaposi's sarcoma
Lymphoma (certain types)
Mycobacterium avium complex
Pneumocystis carinii pneumonia
Pneumonia (recurrent)
Progressive multifocal leukoencephalopathy
Salmonella septicemia (recurrent)
Toxoplasmosis of the brain
Tuberculosis
Wasting syndrome
People who are not infected with HIV may also develop these diseases; this does not mean they have AIDS. To be diagnosed with AIDS, a person must be infected with HIV.
What is HIV treatment?
HIV treatment is the use of medications to keep an HIV infected person healthy. Treatment can help people at all stages of HIV disease. Although anti-HIV medications can treat HIV infection, they cannot cure HIV infection. HIV treatment is complicated and must be tailored to you and your needs.
The Fact Sheets in this series provide information about HIV treatment, including when to start medication, which medications are used, how to know if reatment is working, and what can be done if your treatment is not working.
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*CDC. 1993 Revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults. MMWR 1992;41 (no. RR-17).
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Health Information for Patients
Fact Sheet #2
Seeing an HIV Doctor
I am HIV positive. What kind of doctor do I need?
Your doctor (or other healthcare provider) should be experienced in treating HIV and AIDS. You may want to see an infectious disease specialist. You will need to work closely with your doctor to make informed decisions about your treatment, so it is important to find a doctor with whom you are comfortable.
What can I expect at the doctor's office?
Your doctor will ask you questions about your health, do a physical exam, and order blood tests. This is a good time to ask your doctor questions. Write down any questions you have and take them with you to your appointment.
Women should have a pregnancy test (see HIV and Pregnancy Fact Sheet) and a gynecologic examination with Pap smear.
What questions should I ask my doctor?
You should ask your doctor about:
Risks and benefits of HIV treatment
Other diseases you may be at risk for
How your lifestyle will change with HIV infection
How you can avoid transmitting HIV to others
How you can achieve and maintain a healthier lifestyle
What tests will my doctor order?
It is very important to have a CD4 count and a viral load test done at your first doctor's visit. The results will provide a baseline measurement for future tests.
CD4 count CD4 cells, also called CD4+ T cells, are a type of white blood cell that fights infection. HIV destroys CD4 cells, weakening your body's immune system. A CD4 count is the number of CD4 cells in a sample of blood.
Viral load test A viral load test measures the amount of HIV in a sample of blood. This test shows how well your immune system is controlling the virus.
The two viral load tests commonly used for HIV are:
HIV RNA amplification (RT-PCR) test
Branched chain DNA (bDNA) test
To ensure accurate results, viral load testing should be done at two different times, by the same laboratory, using the same type of test. The results of different types of tests may differ.
Your doctor may also order:
Complete blood count
Blood chemistry profile (including liver function tests)
Tests for other sexually transmitted diseases (STDs)
Tests for other infections, such as hepatitis, tuberculosis, or toxoplasmosis
Am I ready to begin HIV treatment?
Once you begin taking anti-HIV medications, you may need to continue taking them for the rest of your life. Deciding when or if to begin treatment depends on your health (see Starting Anti-HIV Medications Fact Sheet) and your readiness to follow a treatment regimen that may be complicated. You and your doctor should discuss your readiness to begin treatment as well as strategies to make your treatment work for you (see Adherence and Adhering to a Regimen Fact Sheets).
If my doctor and I decide to delay treatment, will I need to have my CD4 count and viral load tested again?
Yes. HIV infected people who have not started drug therapy should have a viral load test every 3 to 4 months and a CD4 count every 3 to 6 months. You and your doctor will use the test results to monitor your infection and to decide when to start treatment.
Terms Used in This Fact Sheet
Baseline measurement: aan initial measurement (such as CD4 count or viral load) made before starting therapy and used as a reference point to monitor your HIV infection.
Liver function tests: these tests measure the levels of liver enzymes (proteins made and used by the liver) to determine if your liver is working properly.
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Health Information for Patients
Fact Sheet #3
Starting Anti-HIV Medications
I am HIV positive. Do I need to take anti-HIV medications?
You do not necessarily need to take anti-HIV (also called antiretroviral) medications just because you are HIV positive. You and your doctor will determine the best time to start treatment. When to take anti-HIV medications depends on your overall health, the amount of virus in your blood (viral load), and how well your immune system is working.
How will I know when to start anti-HIV medications?
You and your doctor should consider three factors in deciding when to start treatment: 1) symptoms of advanced HIV disease, 2) viral load, and 3) CD4 count.
You should start treatment if:
you are experiencing severe symptoms of HIV infection or have been diagnosed with AIDS
your viral load is 100,000 copies/mL or more
your CD4 count is 200 cells/mm3 or less
You may also consider starting treatment if your CD4 count is between 200 and 350 cells/mm3; this is something you should discuss with your doctor.
If the anti-HIV medications can help me stay healthy, why wait to start treatment?
Once you begin treatment, you may need to continue taking anti-HIV medications for the rest of your life. Although newer anti-HIV medications are easier to take, starting treatment usually means a significant adjustment in your lifestyle. Some anti-HIV medications need to be taken several times a day at specific times and may require a change in meals and mealtimes.
In addition to their desired effects, anti-HIV medications may have negative side effects, some of which are serious. If the virus is not suppressed completely, drug resistance can develop. Side effects and drug resistance may limit your future treatment choices.
What treatment is right for me?
There are 20 anti-HIV medications approved by the U.S. Food and Drug Administration (FDA) for adults and adolescents. The U.S. Department of Health and Human Services (DHHS) provides HIV treatment guidelines to doctors and patients. These guidelines recommend that you take a combination of three or more medications in a regimen called Highly Active Antiretroviral Therapy (HAART). The guidelines list "preferred" HAART regimens. However, your regimen should be tailored to your needs. Factors to consider in selecting a treatment regimen include:
number of pills
how often the pills must be taken
if pills can be taken with or without food
how the medications interact with one another
other medications you take
other diseases or conditions
pregnancy
Terms Used in This Fact Sheet
AIDS: Acquired Immune Deficiency Syndrome. AIDS is the most severe form of HIV infection. HIV infected patients are diagnosed with AIDS when their CD4 count cell counts fall below 200 cells/mm3 or they develop an AIDS-defining illness (an illness that is very unusual in someone who is not HIV positive).
Antiretroviral: a medication that interferes with replication of retroviruses. HIV is a retrovirus.
CD4 count: CD4 cells, also called T cells or CD4+ T cells, are white blood cells that fight infection. HIV destroys CD4 cells, making it harder for your body to fight infections. A CD4 count is the number of CD4 cells in a sample of blood.
Drug Resistance: HIV can mutate (change form) while a person is taking anti-HIV medication. This may result in HIV that cannot be controlled with medication.
Viral load: the amount of HIV in a sample of blood.
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Health Information for Patients
Fact Sheet #4
Recommended HIV Treatment Regimens
When I start treatment, what kinds of medications will I need to take?
Anti-HIV medications are used to control the reproduction of the virus and to slow the progression of HIV disease. Anti-HIV medications are also called antiretroviral medications. There are four classes of FDA-approved antiretroviral medications: NRTIs, NNRTIs, PIs, and fusion inhibitors. Approved Anti-HIV Medications Fact Sheet lists the FDA-approved antiretroviral medications by class.
How many medications will I need to take?
The recommended treatment for HIV is a combination of three or more medications in a regimen called Highly Active Antiretroviral Therapy (HAART). How many pills you will need to take and how often you will take them depends on what medications you and your doctor choose.
Which medications should I take?
Each HAART regimen is tailored to the individual patient there is no one "best" regimen. You and your doctor will decide which medications are right for you. For people taking HAART for the first time, the recommended regimens are:
Sustiva + Epivir + (Retrovir or Viread or Zerit)
Kaletra + Epivir + (Retrovir or Zerit)
Are there any other treatment regimens?
Some people may benefit from a different regimen. Recommended alternative regimens are:
Sustiva + Emtriva + (Retrovir or Viread or Zerit)
Sustiva + Videx + (Epivir or Emtriva)
Viramune + (Epivir or Emtriva) + (Retrovir or Zerit or Videx)
Agenerase + low dose Norvir + (Epivir or Emtriva) + (Retrovir or Zerit)
Reyataz + (Epivir or Emtriva) + (Retrovir or Zerit)
Crixivan + (Epivir or Emtriva) + (Retrovir or Zerit)
Crixivan + low dose Norvir + (Epivir or Emtriva) + (Retrovir or Zerit)
Kaletra + Emtriva + (Retrovir or Zerit)
Viracept + (Epivir or Emtriva) + (Retrovir or Zerit)
(Fortovase or Invirase) + low dose Norvir + (Epivir or Emtriva) + (Retrovir or Zerit)
In general, taking only one or two drugs is not recommended because any decrease in viral load is almost always temporary without three or more drugs. The exception is the recommendation for pregnant women, who may take Retrovir alone or with other drugs to reduce the risk of passing HIV to their infants.
If you are pregnant or considering becoming pregnant, there are additional treatment considerations. HIV and Pregnancy Fact Sheet has more information on HIV treatment and pregnancy.
What are some of the negative side effects of HAART?
You may experience negative side effects (drug toxicity) when you take HIV drugs. Some of these side effects are serious, even life-threatening; you may have to change drugs due to intolerable side effects. You and your doctor or pharmacist should discuss the side effects of each medication.
Possible side effects of HAART include:
liver problems
diabetes
abnormal fat distribution (lipodystrophy syndrome)
high cholesterol
increased bleeding in patients with hemophilia
decreased bone density
skin rash
pancreatitis (inflammation of the pancreas)
nerve problems
Side effects that may seem minor, such as fever, nausea, and fatigue, can mean there are serious problems. Always discuss any side effects you are having with your doctor.
Terms Used in This Fact Sheet
Antiretroviral: a medication that interferes with replication of retroviruses. HIV is a retrovirus.
Drug Toxicity: the harm a medication can do to your body.
Viral Load: the amount of HIV in a sample of blood.
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Health Information for Patients
Fact Sheet #5
Approved Medications to Treat HIV Infection
Anti-HIV (also called antiretroviral) medications are used to control the reproduction of the virus and to slow the progression of HIV-related disease. Highly Active Antiretroviral Therapy (HAART) is the recommended treatment for HIV infection. HAART combines three or more anti-HIV medications in a daily regimen. Anti-HIV medications do not cure HIV infection and individuals taking these medications can still transmit HIV to others.
Anti-HIV medications approved by the U.S. Food and Drug Administration (FDA) fall into four classes:
Class Generic Name Brand and Other Names Manufacturer FDA Approval Date
Nonnucleoside Reverse Transcriptase Inhibitors (NNRTIs)
NNRTIs bind to and disable reverse transcriptase, a protein that HIV needs to make more copies of itself.
Delavirdine
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Rescriptor, DLV
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Pfizer
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April 4, 1997
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Efavirenz
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Sustiva, EFV
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Bristol-Myers Squibb
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September 17, 1998
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Nevirapine
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Viramune, NVP
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Boehringer Ingelheim
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June 21, 1996
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Nucleoside Reverse Transcriptase Inhibitors (NRTIs)
NRTIs are faulty versions of building blocks that HIV needs to make more copies of itself. When HIV uses an NRTI instead of a normal building block, reproduction of the virus is stalled.
Abacavir
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Ziagen, ABC
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GlaxoSmithKline
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December 17, 1998
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Abacavir, Lamivudine
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Epzicom
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GlaxoSmithKline
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August 2, 2004
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Abacavir, Lamivudine, Zidovudine
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Trizivir
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GlaxoSmithKline
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November 14, 2000
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Didanosine
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Videx, ddI
Videx EC
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Bristol-Myers Squibb
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October 9, 1991
October 31, 2000
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Emtricitabine
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Emtriva, FTC, Coviracil
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Gilead Sciences
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July 2, 2003
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Emtricitabine, Tenofovir DF
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Truvada
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Gilead Sciences
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August 2, 2004
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Lamivudine
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Epivir, 3TC
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GlaxoSmithKline
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November 17, 1995
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Lamivudine, Zidovudine
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Combivir
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GlaxoSmithKline
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September 27, 1997
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Stavudine
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Zerit, d4T
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Bristol-Myers Squibb
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June 24, 1994
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Tenofovir DF
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Viread, TDF
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Gilead Sciences
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October 26, 2001
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Zalcitabine
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Hivid, ddC
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Hoffman-La Roche
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June 19, 1992
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Zidovudine
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Retrovir, AZT, ZDV
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GlaxoSmithKline
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March 19, 1987
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Protease Inhibitors (PIs)
PIs disable protease, a protein that HIV needs to make more copies of itself.
Amprenavir
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Agenerase, APV
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GlaxoSmithKline, Vertex Pharmaceuticals
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April 15, 1999
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Atazanavir
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Reyataz, ATV
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Bristol-Myers Squibb
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June 20, 2003
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Fosamprenavir
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Lexiva, FPV
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GlaxoSmithKline, Vertex Pharmaceuticals
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October 20, 2003
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Indinavir
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Crixivan, IDV
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Merck
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March 13, 1996
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Lopinavir, Ritonavir
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Kaletra, LPV/r
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Abbott Laboratories
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September 15, 2000
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Nelfinavir
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Viracept, NFV
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Agouron Pharmaceuticals
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March 14, 1997
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Ritonavir
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Norvir, RTV
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Abbott Laboratories
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March 1, 1996
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Saquinavir
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Fortovase, SQV
Invirase
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Hoffman-La Roche
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November 7, 1997
December 6, 1995
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Fusion Inhibitors
Fusion Inhibitors prevent HIV entry into cells.
Enfuvirtide
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Fuzeon, T-20
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Hoffman-La Roche, Trimeris
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March 13, 2003
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This information is based on the U.S. Food and Drug Administration's Drugs Used in the Treatment of HIV Infection
(available at:
http://www.fda.gov/oashi/aids/virals.html)
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Health Information for Patients
Fact Sheet #6
Is My Treatment Regimen Working?
How will I know if my HIV treatment regimen is working?
In general, viral load is the most important indicator of how well your regimen is working. Your viral load should decrease if your medications are effective. Other factors that can tell you and your doctor how well your regimen is working are:
Your CD4 count. This should remain stable or go up if your drugs are working.
Your recent health and results of physical examinations. Your treatment regimen should help keep you healthy.
How often should I have a viral load test?
Your viral load should be tested 2 to 8 weeks after you start treatment, then every 3 to 4 months throughout treatment to make sure your drugs are still working. HIV treatment should reduce your viral load to the point at which it is undetectable. An undetectable viral load does not mean that your HIV infection is gone; it simply means that the test is not sensitive enough to detect the small amount of HIV left in your blood.
If your viral load is still detectable within 4 to 6 months after starting treatment, you and your doctor should discuss how well you have adhered to your regimen (see Adherence and Adhering to a Regimen Fact Sheets). Missing medication doses is the most common reason for treatment failure and development of drug resistance. Your doctor should do a drug resistance test, which will determine if the HIV in your body has mutated into a strain that your current treatment regimen can't control.
How fast or how much your viral load decreases depends on factors other than your treatment regimen. These factors include your baseline viral load and CD4 count, whether you have taken HIV drugs before, whether you have HIV-related medical conditions, and how closely you have followed (adhered to) your treatment. Talk with your doctor if you are concerned about the results of your viral load tests.
How often should I have a CD4 count?
CD4 counts also indicate how well your treatment regimen is working. Your CD4 count should be tested every 3 to 6 months throughout your treatment. HIV treatment should increase your CD4 count or at least keep it from going down. Talk to your doctor if you are concerned about your CD4 counts.
