Deciding to start HIV treatment—and figuring out which drugs to start with—is, perhaps, one of the most difficult decisions you will need to make. Learning all you can about the pros and cons of your various treatment options is your best weapon in the fight against HIV. The following information will help you communicate effectively with your doctor as you discuss your treatment options.
Why is treatment necessary?
If HIV is allowed to reproduce, or “replicate,” inside the body, it will cause damage to the immune system. Ultimately, the immune system gets so weak that the body becomes vulnerable to other diseases. This is the point at which a person is usually diagnosed with AIDS, and the other diseases they get can eventually cause death. For adults who live in wealthy nations—such as the United States—the average time between becoming infected with HIV and the development of AIDS is 10 years.
This does not, however, include people who take HIV drugs. Clinical trials—studies in which new and old drugs are tested in humans—have repeatedly shown that HIV drugs can keep HIV-infected people alive longer. Treatment, therefore, is a very important option, and people living with the virus should consider starting treatment before HIV has had a chance to do serious damage to their immune systems. Experts believe that people who start HIV treatment while their immune systems are still within normal parameters have the greatest chance of living out something close to a normal life span.
Recent evidence, however, suggests that mild-to-moderate immune damage earlier in the course of disease, as well as inflammation due to actively reproducing virus, might increase a person’s risk for non-AIDS-defining illness such as cardiovascular disease, kidney disease, liver disease and certain cancers. This evidence has prompted experts to recommend treatment earlier than they have done in the past.
HIV treatment is now recommended for all people living with HIV in the United States.
When should treatment be started?
The U.S. Department of Health and Human Services (DHHS)—the federal agency responsible for setting health-related policies in the United States—regularly updates and publishes HIV treatment guidelines to help HIV-positive patients and their health care providers determine when antiretroviral therapy should be started. Here is what the guidelines, last updated in January 2016, recommend:
- Antiretroviral therapy is recommended for all people living with HIV, regardless of CD4 cell count, to reduce the risk of AIDS- and non-AIDS-related illnesses.
- Antiretroviral therapy is recommended for people living with HIV for the prevention of HIV transmission.
- It’s important that HIV-positive individuals are educated on the benefits and risks regarding antiretroviral therapy and address strategies to optimize adherence (e.g., taking medications every day, exactly as prescribed). HIV-positive individuals who may not be able to adhere to treatment (e.g., because of mental health challenges, illicit drug use, other major medical problems, etc.) may elect to defer treatment but it should be started as soon as possible.
Working closely with your health care provider, you can determine when the best time is to start treatment. Though the treatment guidelines recommend antiretroviral is started soon after HIV is diagnosed—the decision to begin therapy also depends on your physical health and your mental readiness to start treatment and stick with it.
In the past, the treatment recommendations were based on an individual’s CD4 cell count. CD4 cells—also known as T-cells, T-helper cells, or T4-cells—belong to a group of white blood cells called lymphocytes. These cells have the double distinction of not only being the primary target of HIV, but also carry the responsibility of coordinating the way in which the immune system responds to disease-causing infections. When the CD4 cell count—the number of cells in a cubic millimeter or milliliter of blood—drops below 200, the immune system is considered to be “compromised” and you are at a higher risk of experiencing an AIDS-related opportunistic infection, like Pneumocystis pneumonia. In fact, immune system damage and certain HIV-related health problems can occur at even higher CD4 cell levels.
A person’s viral load—the amount of HIV in a milliliter of blood—was also widely used to help patients and their health care providers decide when to begin treatment. The higher the viral load, experts suggested, the faster someone might see his or her CD4 cell counts fall to dangerously low levels. Even if a patient had a relatively healthy CD4 count, treatment might still be recommended if he or she had a high viral load. Today, viral load isn’t commonly used to figure out when therapy should be started. But viral load testing is still a routine component of HIV treatment, notably to help patients and their doctors determine if treatment is working correctly.
Do I really need to start HIV treatment immediately?
The recommendation that treatment be started by all U.S. residents living with HIV, regardless of their CD4 cell count, is based on three major goals:
- To treat HIV before the virus has had a chance to cause serious damage to the immune system.
- To reduce the risk of non-AIDS-related diseases, such as those typically associated with aging, that are becoming increasingly common among people living with HIV.
- To reduce the risk of transmitting the virus to others.
Here’s a more detailed look at the potential benefits of early treatment, along with the possible risks:
- Keep your CD4 count high and possibly prevent irreversible damage to the immune system.
- Decrease your risk of certain HIV-related health problems that can sometimes occur in people with high CD4 counts, including tuberculosis, non-Hodgkin’s lymphoma, Kaposi’s sarcoma, peripheral neuropathy, cancers and pre-cancers caused by human papillomavirus (HPV), and mental deficits seen in some people with HIV such as difficulty thinking and reasoning (neurocognitive problems).
- Decrease your risk of serious health problems that occur more frequently in HIV-positive people, such as cardiovascular disease, kidney disease, liver disease, neurological complications and various non-AIDS-related cancers and infections.
- Reduce your risk of transmitting HIV to others—several studies have confirmed an association between undetectable viral loads and a greatly reduced risk of transmitting the virus, notably during sexual activity and pregnancy. One clinical trial in particular (HPTN 052), involving mixed-status heterosexual couples, found that treating HIV-positive people with ARV drugs reduces the risk of transmitting the virus to HIV-negative sexual partners by 96 percent.
- Risk developing treatment-related side effects, including long-term side effects that haven’t yet been discovered.
- Risk developing HIV drug resistance, resulting in loss of future treatment options.
- Less time for you to learn about HIV and its treatment, and less time to prepare for adherence to therapy.
- Increased risk of transmitting drug-resistant HIV to others if you have a detectable viral load while on treatment.
What if I’m pregnant?
Women, whether or not they are pregnant, should be treated using HIV drugs in accordance with their own health needs. In other words, women should not be forced to compromise their own health simply because they are pregnant. Many HIV therapies do, in fact, have a positive impact on the life and health of the baby. Click here for detailed information about pregnancy and HIV.
How do I know my treatment is working?
When HIV drug therapy is started—preferably with a powerful combination of drugs—the level of HIV should start to drop dramatically. This is where viral load testing comes in. During the first two months of therapy, an HIV-infected person’s viral load should drop a minimum of 90 percent. In other words, someone who starts treatment with a viral load count of 100,000 should drop to 10,000 or less within two months. Within 4 to 6 months of starting therapy, the viral load should have dropped a lot more, hopefully below the level of the viral load test’s sensitivity (“undetectable”). Sometimes undetectable means a count less than 400 or 500, but most tests used today can detect as few as 50. Generally, the higher your viral load is before starting therapy, the longer it will take to become undetectable.
As for your CD4 cell count, you will likely see an increase between 100 and 200 cells in the first 12 to 18 months, and can gradually climb from there as long as viral load remains undetectable. Some people who start HIV treatment for the first time have a poor CD4 response despite achieving and maintaining an undetectable viral load. Researchers refer to individuals in this situation as “discordant responders.” Most discordant responders waited to start treatment until their CD4 counts were well below 200. This is one of the reasons that the guidelines recommend starting ARVs earlier.
You and your doctor should continue monitoring your viral load on a regular basis to make sure that the HIV drugs are working properly and that the amount of virus in the blood remains below the level of detection or as low as possible.
If your viral load increases while taking HIV drugs, this may mean that drug resistance has occurred. Click here to learn more about drug resistance.
You should also have your CD4 cell count checked regularly—usually every 3 to 6 months. Additional tests that your health care provider should monitor to ensure that you are not experiencing certain side effects include proteins associated with liver and kidney health, your cholesterol and your blood sugar.
And be sure to discuss with your doctor any problems you are having with your treatment regimen without delay. If you find yourself missing doses or experiencing side effects, you might be able to switch your current regimen for one that is easier to take or associated with fewer side effects. But it is crucial that you do this sooner rather than later.