HIV Care

Understanding HIV, Prevention, Care, and Treatment

LIFE with HIV

For many people, being diagnosed with is a life-changing event. A multitude of questions may be circling in the mind of a newly diagnosed individual and/or the family and friends of someone that may have been newly diagnosed or just disclosed their HIV status. This section will answer questions regarding the physical and mental health for individuals living with HIV and caring for persons living with HIV.

HIV/AIDS can be a life-threatening illness. At this time there is no cure for HIV infection, however with proper medical monitoring and treatment and social support many people are able to manage life with HIV as chronic (lifelong) illness. The major difference between living with HIV and dying from AIDS-related complications is what a person does after learning their HIV positive status (diagnosis).

What does an HIV positive test result mean?

When an HIV-antibody test is returned to a person and the results are positive, four things are known to be true:

1. HIV infection has occurred
2. Antibodies to HIV have formed.
3. A screening test called the ELISA or EIA detected the antibodies.
4. A confirmatory test called the Western Blot test confirmed that the antibodies were indeed HIV antibodies.

For some people who are tested during the window period, they may test negative however, despite HIV infection being present because the antibodies have yet to form. For people that initially test during the window period, receiving an HIV positive test result may more devastating, because they may have truly thought that they were not infected.

An HIV positive test result does not mean that the individual is currently sick or will soon become sick. An HIV positive test result means that the antibodies have been detected, further medical consultation will be required to determine the current health status of the individual.

What is HIV? What is AIDS? What's the difference?

HIV (human immunodeficiency virus) is the virus that causes AIDS. AIDS (acquired immune deficiency syndrome) is the result of HIV infection. Many would consider an AIDS diagnosis to be the late or advanced stages of HIV. At the time that an individual has been diagnosed with AIDS, a doctor or some other medical provider informed her/him that the:

• CD4+T-cell count is 200 or less; and
• The individual has had 2 opportunistic infections
  (SEE Common Opportunistic Infections) in the past.

The major difference between HIV and AIDS is the fact that once an individual is diagnosed with AIDS the immune system has been extremely compromised and immediate medical attention will be required to fight off other infections. This is done to prevent premature death and to improve the quality of life of the individual.

What does HIV do to me?

HIV attacks the immunes, and therefore affects everyone a little differently. Medical providers assess how HIV is specifically affecting an individual testing the CD4+ T-cell count and viral load.

CD4+ T-cell counts usually range from 500 - 1500 in a healthy individual without anything compromising the immune system. In a person living with HIV, the viral load or the copies of the virus per milliliter (copies/mL) of blood has been documented as high as 1.2 million. Why are viral loads and CD4+ T-cell counts so important?

• CD4+ T-cell count is one of the clinical aspects of an AIDS diagnosis
• CD4+ T-cell counts ≤ 350 or viral loads > 55,000 copies/mL is an indication of when HIV treatment should begin.ⁱ

The HIV Speed Train
By Lawrence E. Lewis, MSW

HIV = Train
CD4+ = Workers
Antibodies = Railroad Track
Viral Load = Speed

The above illustration of a train provides a good way to think about the relationship between HIV, CD4+ T-cells, and viral loads.

Once infected with HIV, the body has this powerful and fast train that speeds through your body. This train's primary mission is to seek and destroy so that once it has knocked out all defenses; other invaders (Opportunistic Infections) can come in and take over. Without any outside assistance (medication - Highly Active Antiretroviral Therapy), the train will finally make to the end of the line and crash into the main station (destroy the immune system); the workers (CD4+ T-Cells) have only one thing they can do, extend the track (antibodies). Extending the track helps to delay the inevitable destruction of the main station.

Along the way, the train (HIV) is steadily picking up speed (increasing viral load). Over time the train starts plowing over the workers (CD4+ T-cells), which decreases the amount of railroad track (antibodies) that can be laid. More workers (CD4+ T-Cells) are sent out over time, but the train just keeps getting faster and faster.

After years of this train getting faster (viral load increasing) and workers (CD4+ T-Cells) being killed and replaced, the speed of the train is faster than the speed at which workers can be lay track and be replaced. Outside assistance (medication - Highly Active Antiretroviral Therapy), is now required; because, when the workers (CD4+ T-Cells) are outnumbered and other invaders (Opportunistic Infections) come in a crisis may be declared (the person is diagnosed with AIDS). The outside assistance (medication - Highly Active Antiretroviral Therapy) comes in and slows down (reduces the viral load) the train. The train doesn't stop moving and the outside assistance (medications) may be required till the train eventually runs its course (the person dies), but this gives the person more time because it helps to regulate the speed of the train (the viral load) and to increase the workers (CD4+ T-Cells); thereby giving the person more time.

What do my lab tests/results mean?

Physicians often use blood tests, which can be very difficult to understand, to monitor the overall health of a person living with HIV. Blood samples are typically used to perform five different types of tests:

1. Hematology tests: used to measure the number and amount of red blood cells, white blood cells, and platelets.
1. Red cells carry oxygen to body tissues and remove carbon dioxide
2. White cells fight infections and harmful substances that invade the body
3. Platelets help stop bleeding by plugging leaks in blood vessels
2. Blood chemistry tests: used to measure chemicals such as blood sugar (glucose), liver enzymes, cholesterol, etc. in the blood.
3. Microbiology tests: used to find certain disease-causing microorganisms in the blood.
4. Serology tests: used to find the antibodies produced by the immune system in reaction to infection.
5. HIV Specific tests: used to measure the viral load and assess drug resistance.

Many of the blood tests are used by physicians to measure overall health, but specific information regarding the progression of HIV are found in the Hematology tests (which also measure CD4 count, CD4 percentage, and CD8 count, CD8 percentage and T-Cell ratio) and HIV Specific test (which measure viral load and assess drug resistance). The importance and specifics of these tests are discussed below.

CD4+ T-Cells

CD4+ T-Cells (helper T-cells) are responsible for alerting other parts of the immune system to fight an infection in the body. The normal CD4 range is somewhere between 500 and 1500 cells per cubic millimeter (cells/mm3). In the absence of anti-HIV treatment, the average HIV-infected person has a decrease in helper T-cell count of about 50 to 100 cells per cubic millimeter each yearⁱⁱ. This gradual decrease in CD4+ T-Cells indicates, why it can take 10-12 years for some to present with any HIV-related illness.

CD4+ T-Cells can also be indicators for:

• When to begin HIV medication: CD4+ T-cell counts ≤ 350
• When to begin certain HIV-related prophylaxis (medication that prevents other infections).

CD4 Percentage

CD4+ T-Cells are a component of a group of white blood cells called lymphocytes. In a healthy adult, helper T-cells account for between 32% and 68% of the total number of lymphocytes.ⁱⁱⁱ The actual T-cell count may not always be a clear indication for immune system functioning, because of natural fluctuation. For this reason a doctor may consider the percentage over the actual count, because the percentage is more constant.

CD8 count, CD8 percentage, T-cell ratio^iv

CD8 cells, also called suppressor T-cells, play a role in fighting viral infections such as HIV. A healthy adult usually has between 150 and 1,000 CD8 cells per cubic millimeter (cells/mm3). In contrast to CD4 cells, persons with HIV infection often have elevated (more) numbers of CD8 cells, the significance of which is not clearly known. Lab reports may also list the T-cell ratio, which is the number of CD4 cells divided by the number of CD8 cells. Since the CD4 count is usually lower and the CD8 count higher than normal, the ratio is usually low in persons with HIV infection. A normal T-cell ratio is usually between 0.9 and 6. The expected response to effective combination anti-HIV treatment (Highly Active Antiretroviral Therapy - HAART) is an increase in CD4 count, a decrease in CD8 count, and an increase in the T-cell ratio.

Viral Load

Viral load tests measure the amount of HIV per milliliter of blood (copies/mL). In addition to knowing the levels of HIV in a persons system, it provides insight, in conjunction with the CD4 count, for when to begin antiretroviral therapy.

An important note about viral load tests: Not every viral load test has the same level of sensitivity. Some measure as low as 5 copies/mL to 40 copies/mL to 500 copies/mL and the original viral load test considered undetectable to be 10,000 copies/mL. Undetectable does not mean that a person is not able to infect another person, just means that the test does not detect HIV in the blood. Only about 2% of the HIV in your body is in the blood. The viral load test does not measure how much HIV is in body tissues like the lymph nodes, spleen, or brain. HIV levels in lymph tissue and semen go down when blood levels go down, but not at the same time or the same rate.^v

Drug Resistance Test^vi

While viral load tests can help patients and doctors determine whether or not a treatment is effective, drug resistance tests may help determine why a treatment or combination of treatments may not be working. Drug resistance tests may also be useful in choosing treatments. The two types of tests that are run are:

• Genotypic testing looks for key mutations (small changes) in HIV associated with resistance to a particular drug.
• Phenotypic testing looks for the ability of HIV to replicate in a test tube in the presence of a particular drug. This test is a more direct measure of resistance than genotypic testing, which allows easier interpretation of the results. However, phenotypic testing takes longer and is more expensive to perform.

Drug resistance testing compliments the overall goals of HIV treatment:

• Maintaining viral suppression;
• Enhancing and maintaining quality of life.

How do I deal with HIV?

Being diagnosed with HIV can be an overwhelming experience, and some people deal with feelings of anger, betrayal, hurt, loss, frustration, guilt, shame, and confusion. No feeling that a person may be feeling after such an enormous discovery is wrong. However, if an individual begins to have thoughts of harming themselves, or can no longer cope and manage their individual lives, it is important to seek professional help.

Case managers help to lessen the impact of discovering one's HIV status, but other mental health professionals may be required. Seeking the assistance of a mental health professional through a support group, group therapy, or individual therapy does not diminish the worth of an individual, but offers an opportunity to rediscover the true self and learn skills that will assist in the lifelong journey with HIV, that a diagnosis brings.

Who has the right to know?

The laws and policies concerning who has the right to know one's HIV status, vary from state to state. In the State of Missouri the following individuals have the right to know one's HIV status in the following situations:

• The legally married spouse of a person living with HIV;
• Medical providers (e.g., doctors, nurses, EMT, etc.);
• If a person is incarcerated, Department of Corrections (DOC) medical staff are the only DOC staff or personnel who need to know;
• If a sex offender is found to be living with HIV the victims, the victim's parents/guardians if the victim is a minor, and the probation/parole officer;
• The State of Missouri Department of Health and Senior Services.

Who must be notified of my HIV status?

As HIV is a communicable disease transmitted via blood, semen, vaginal fluids, and breast milk, individuals living with HIV should not donate blood at blood banks, and should notify phlebotomist or other technicians if a blood or other body sample needs to be taken.

In the State of Missouri individuals living with HIV are responsible for notifying:

• Any and all sex/needle sharing partners prior to exposing the other person. The use of a condom is not sufficient. You must tell the person prior to the act.
• All first responders, paramedics, dentist and other medical providers.
• Legal spouse.

If the individual living with HIV is a minor the parent/guardian takes on these responsibilities.

Signs & Symptoms

Most people living with HIV may not experience any symptoms for years. Those symptoms may include:

• Persistent fevers
• Night sweats
• Prolonged diarrhea
• Unexplained weight loss
• Purple bumps on skin or inside mouth and nose
• Chronic fatigue
• Swollen lymph nodes
• Recurrent respiratory infections

It is important to remember that these symptoms alone do not constitute HIV infection or an AIDS diagnosis. All symptoms must be confirmed with the proper tests or doctor's diagnosis.

For persons living with HIV and their caretakers, it is also important to remember that HIV infection does not mean that normal illness and sickness will not occur. Actually as the immune system is further compromised recurrent sinus infections, influenza, colds, etc., may occur. These should be treated with the consultation of a doctor, but remember that every sneeze from a person living with HIV means that they are about to become deathly ill.

What should I do if a loved one test's positive for HIV?

If a loved one (family member, friend, significant other, etc.) discloses that he/she tested positive for HIV try to in the midst of the confusion remember, that he/she chose to tell you. This means that he/she values the relationship with you and wants to you know what is happening in his/her life. Continue to show your support and love for this individual and much like the person living with HIV, you will want to:

• Learn more about HIV;
• Help your loved one keep track of medical appointments and the status of their immune system (if necessary);
• Discuss with your loved one the options for care that he/she has thought about.

Just continue to show love and support as you both make the transition into a new phase of life. Just remember HIV is not spread through casual contact, and that to become infected an infected person's blood, semen, vaginal fluids, or breast milk must enter your system. If this is a sexual relationship seriously talk about condoms and be tested to learn your own HIV status.

What resources are available?

A limited number of resources are available specifically for individuals living with HIV/AIDS around the State of Missouri. To discover which organizations are available in your area go to Community Connections and follow the directions for your area and type in HIV or AIDS (Do not type HIV/AIDS as the syntax confuses the computer).