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Getting Informed About HIV

Part One of Three in Project Inform's "After You've Tested Positive" Booklet

July 2011

What Is HIV Disease?

Simply put, HIV disease is a disease of the immune system, although it can affect other parts of the body like the brain or kidneys. HIV (human immunodeficiency virus) causes disease because it gets into immune cells -- especially CD4 cells -- and uses them to reproduce. CD4 cells oversee the immune response, so as HIV infects and kills more of these cells, your body loses its ability to fight off illnesses called opportunistic infections, or OIs.


This gradual damage doesn't happen the same way or even at the same pace in everyone. In some people HIV weakens the immune system rapidly, in just a few years, while in others this doesn't happen at all. Without HIV treatment, it takes about 8-10 years before most people would face their first serious symptoms.

However, it's important to start treatment before these symptoms appear. With treatment, studies suggest that many people can live 40 years or more with HIV. Almost everyone will need to start treatment. A full consultation with a doctor can help you decide the best health care for you.

Even though you probably feel well, HIV is still considered a disease. The word disease may make it seem like you should feel sick, when in fact you can feel quite well a lot of the time. For this reason, some people don't think of it as a disease; instead they say they live with HIV or are HIV-positive.

However, the term AIDS is different. AIDS is the latter stage of HIV disease, when an HIV-positive person has lost a large number of CD4s or developed certain OIs or cancers. AIDS-defining conditions include a CD4 count below 200, a CD4 percentage below 14%, and about two dozen AIDS-defining OIs. (More on CD4s is found in the section titled "HIV treatment guidelines".)

Your Immune System

Your Immune System

The immune system is made of many parts: cells, tissues, organs, fluids and vessels. Some of these include the skin, appendix, tonsils, spleen, thymus and lymph glands. Scientists know a lot about how the immune system works, but there's a great deal more to learn.

Your immune system is always on alert to find microorganisms like viruses or bacteria. These are also called pathogens, which means they can cause disease. When one is found, the immune system goes into action to destroy and get rid of it so it can't cause disease, which it does in many complex ways. As a result, you can feel various symptoms like headache, fever or aches and pains. This is why, during early HIV infection, many people feel like they have the flu.

Although the immune system can control HIV to some degree in most people over time, the virus can still push it out of balance, cause inflammation and destroy immune cells (mainly CD4s) that may not be easily replaced. Researchers are looking at ways to replenish these lost immune cells.

One way to help maintain a healthy immune system is to get into care as soon as possible to keep track of your health. Others include adopting habits that promote health like proper diet and exercise, preventing infections and starting HIV treatment when it's right for you. Using HIV medicines is the only way we know to control the virus over time, and treatment has improved and extended the lives of people living with HIV.

Do You Have to Start Meds Right Away?

Do You Have to Start Meds Right Away?

The answer depends on your situation. Many newly diagnosed people do not have to start treatment right away. You likely have time to get used to your diagnosis, learn about HIV and get your "ducks in a row." This includes fully understanding the benefits and risks of treatment and figuring out how and where to get your medications. However, some people should start HIV treatment right away.

As new information becomes available, a panel of experts revises treatment Guidelines to help you make decisions about when to start HIV meds. (See page 11.) If blood tests show that your immune system is not controlling HIV or you have lost too many CD4s or you have other illnesses that make you less healthy, you may need to start. Pregnant HIV-positive women are also advised to start to protect them and their babies. Other people will start right away because they believe starting sooner will be better for them in the long run. This is something to discuss in more depth with your doctor or other people you trust. Some experts think that starting as soon as possible may help prevent immune system damage and other detrimental effects of HIV, while others feel it's better to wait due to possible long-term side effects.

HIV Treatment Guidelines

Two Common Blood Tests: CD4 Count and Viral Load

The US Guidelines for treating HIV infection in adults were last updated January 2011. Updates are based on the latest understanding of current HIV research as interpreted by a panel of more than 30 HIV-experienced doctors, researchers and community representatives. The panel considers a broad range of study results and makes recommendations based on these data and their expert opinions.

As of December 2009, the panel recommends that everyone who has a CD4 count below 500 should start treatment. Pregnant women, people with an AIDS-defining illness, people with HIV-related kidney disease, and people with hepatitis B who need to be treated for it should start HIV treatment regardless of their CD4 count.

These Guidelines are recommendations -- not strict rules -- but they're an important source of information. You and your doctor will likely use the Guidelines to make treatment decisions, while also considering your unique health needs, lifestyle and ability to start and stay on a regimen.

Two Blood Tests: CD4 Count and Viral Load

Two blood tests are used to track the health of your immune system, which can inform decisions about starting or changing HIV treatment. The first, the CD4 count, shows how many of these important immune cells are found in a sample of blood, which represents the total amount in your body. CD4s can be thought of as the "directors" of the immune system, guiding the immune response by telling other cells what to do. The goal is to keep your CD4s as high as possible for as long as possible.

CD4 Range What It Generally Means

  Below 200

Should be on treatment. Indicates an AIDS diagnosis.


Should be on treatment. Some disease symptoms likely.


Recommend treatment.* Symptoms less likely, but possible.

  Above 500

"Normal" range. Could be on treatment.* Symptoms less likely.

* From US Guidelines for treating HIV.

The other test, the viral load, shows the amount of HIV found in a sample of blood, which represents the total amount in your body. Another major goal of HIV treatment is to keep viral load as low as possible for as long as possible, ideally undetectable or below 50 copies. This means your immune system or HIV meds are keeping the virus under control. A low viral load is considered to be below 55,000, while a high viral load is considered to be above 100,000.

This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
See Also
"After You've Tested Positive": Table of Contents
Part Two: Getting Involved in Your Health Care
Part Three: Learning to Support Yourself


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