for Veterans and the Public
Treatment Decisions for HIV: Entire Section
HIV is a virus that can multiply quickly in your body and damage your immune system. Even though no cure exists for HIV infection or the later stage of HIV disease known as AIDS, there are many different drugs that can substantially slow down the damage done by the HIV virus and allow the immune system to recover. Treatment allows people to live longer and healthier lives, and helps prevent transmission of HIV to sex partners. Most people who take medicine for their HIV infection can now expect to live healthy lives for many years.
Without treatment, HIV can make your immune system very weak. Your immune system is what allows your body to fight off infections and cancers. When it is weakened, you will have a hard time staying well.
Deciding to start taking anti-HIV drugs is a very personal choice, and one that cannot be made alone. It is important to talk with your VA health care provider, who can help you make a wise, appropriate decision.
This lesson can help you decide:
- Whether to start therapy
- What drugs to take
- Whether to continue therapy
Deciding whether to start therapy
HIV drugs can be lifesavers, and are very important in keeping people healthy over the years. Effective treatment stops or slows the progression of HIV. In recent years, scientists have been learning more about the benefits of treatment even for persons whose immune systems appear to be functioning relatively well. Thus, in general, HIV drugs are recommended for ALL people with HIV infection, whether they are sick or well (though starting treatment is more urgent for people whose immune systems are weaker).
However, there are reasons some people may not start taking HIV treatment right away. For one thing, the medications must be taken correctly every day or the virus may become resistant to drugs. That means the virus may change in a way that makes the drug no longer work. The most common cause of drug resistance is not taking medications correctly. Also, HIV medicines, like any other drugs may cause side effects in some people. But for most people the newer HIV drugs are quite tolerable. In addition, the drug regime typically is simple and compact (usually between 1 and 3 pills per day).
As we said earlier, treatment of HIV is recommended for all people with the infection. In terms of exactly when to start the drugs, experts say you can consider these things:
- Symptoms of HIV disease (also called your clinical status, or how well you feel)
- Your CD4 count and viral load
- Whether you have certain other medical conditions that may be helped by HIV treatment
- Whether you can and will stick to your treatment plan (called adherence)
- Whether you have sex partner(s) who are HIV-negative and may be at risk of becoming infected through you.
We will look at each of these more closely.
Symptoms (clinical status)
"Clinical status" refers to how well you are doing in general, including how well you feel. Your doctor will look at whether you have symptoms of HIV disease. These symptoms are signs that HIV is weakening your immune system, and include things such as weight loss, chronic fevers, and opportunistic infections. (Opportunistic infections--also called OIs-- are infections that happen in someone with a damaged immune system.)
CD4 count and viral load
Even though you may not feel it, when you have HIV, the virus and your immune system are at war with each other. The virus is trying to grow as fast as it can, and your body is trying to stop it. Two tests, the CD4 count and the HIV viral load, help you and your health care provider know how strong your immune system is, and know whether it is keeping HIV under control.
CD4 cells play a major role in helping your immune system work properly. HIV causes disease by killing off CD4 cells. It does this by infecting the cells and turning them into virus factories, a process that kills the cell. A test called the CD4 count can tell you how many CD4 cells you have. The higher the number, the better. The test, however, doesn't tell you if those CD4 cells are working properly.
The viral load test indicates how much of the HIV virus is present in your blood, and how fast it is growing. The higher the viral load, the faster HIV is infecting and killing your CD4 cells. The lower the viral load, the better.
Your health care provider will look at these two things carefully. People whose CD4 count is low, and people whose viral load is high, are more likely to get sick sooner than people with a high CD4 count and low viral load.
CD4 count and viral load tests usually are done every 3 months. Results can help you and your health care provider decide how urgent it is to start anti-HIV drugs. The U.S. Department of Health and Human Services makes general recommendations regarding when HIV-positive people should start taking HIV drugs. These are not firm rules, just guidelines. These guidelines recommend HIV drugs for everyone, no matter how high or low their CD4 count is. However, they say that HIV treatment is especially important if your CD4 count is lower, or if you have symptoms. The lower the CD4, the more important it is to start treatment quickly.
Whether you have certain other medical conditions that may be helped by HIV treatment
Starting HIV drugs may be particularly important for people with certain other medical conditions. For example, your doctor will recommend HIV therapy if you are pregnant or plan to become pregnant, if you have kidney disease that is caused by HIV, or if you have hepatitis B or hepatitis C.
Whether you can and will stick to your treatment plan (adherence)
It is very important to start drug therapy only when you are ready to make a strong commitment to sticking to a drug therapy plan (or regimen). With an HIV drug regimen, you will need to take pills every day!
In order for the drugs to work and keep working, you must follow the directions for taking them very carefully. If you're not sure you can do this, you might need help in finding ways to stick to the plan.
If you are wondering whether you should start taking drugs for HIV, you should sit down and talk with your provider as soon as possible. Depending on your specific needs, your provider can come up with a personal treatment plan for you.
Risk of transmitting HIV to sexual partners
HIV therapy has been shown to reduce the risk of transmitting HIV to uninfected sex partners. Thus, if you have a sexual partner or who is HIV-negative, you may consider starting HIV treatment both to protect and improve your own health and to prevent transmission to partners.
Deciding what drugs to take
Once you and your doctor have decided that you should start taking drugs for HIV, your doctor will come up with a personal treatment plan for you. You will find it easier to understand your plan if you learn about the different drugs available and what they do.
Print out these questions to ask your doctor when you start to discuss particular drugs.
What kinds of drugs are available?
Anti-HIV drugs are also called antiretroviral drugs or antiretrovirals. They work because they attack the HIV virus directly. The drugs cripple the ability of the virus to make copies of itself.
There are 6 main classes of anti-HIV drugs:
- Nucleoside Reverse Transcriptase Inhibitors (NRTIs or "nukes")
- Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs or "non-nukes")
- Protease Inhibitors (PIs)
- Integrase Inhibitors
- Chemokine Coreceptor Antagonists (CCR5 Antagonists)
- Fusion or Entry Inhibitors
Each group attacks HIV in its own way and helps your body fight the infection. Most of these drugs come as tablets or capsules. Several of these drugs may be combined into one tablet to make it easier to take your medications. These are known as fixed-dose combinations.
The following is a short description of how each group of drugs works and the names of the drugs.
Note: The names of drugs are long and sometimes hard to pronounce. Don't worry! You can always come back and read this again, and you can talk to your VA doctor about questions you have.
Nucleoside Reverse Transcriptase Inhibitors (NRTIs or nukes)
The first group of antiretroviral drugs is the nucleoside reverse transcriptase (pronounced "trans-krip-tase") inhibitors (NRTIs).
NRTIs were the first type of drug available to treat HIV. They remain effective, powerful, and important medications for treating HIV when combined with other drugs. They are better known as nucleoside analogues or "nukes."
When the HIV virus enters a healthy cell, it attempts to make copies of itself. It does this by using an enzyme called reverse transcriptase. The NRTIs work because they block that enzyme. Without reverse transcriptase, HIV can't make new virus copies of itself.
The following is a list of the drugs in the NRTI class:
- Emtriva® (emtricitabine)
- Epivir® (3TC, lamivudine)
- Retrovir® (AZT, zidovudine)
- Videx-EC® (ddI, didanosine)
- Viread® (tenofovir)
- Zerit® (d4T, stavudine)
- Ziagen® (abacavir)
Several of the NRTI drugs may be combined into one tablet to make it easier to take your medications. These drugs are known as fixed-dose combinations:
- Combivir® (Retrovir + Epivir)
- Epzicom® (Epivir + Ziagen)
- Trizivir® (Retrovir + Epivir + Ziagen)
- Truvada® (Viread + Emtriva)
Non-nucleoside Reverse Transcriptase Inhibitors (NNRTIs or non-nukes)
The second type of antiretroviral drugs is the non-nucleoside reverse transcriptase inhibitors (NNRTIs). These drugs are sometimes called non-nucleosides or "non-nukes."
These drugs also prevent HIV from using reverse transcriptase to make copies of itself, but in a different way.
These NNRTIs are available:
- Edurant® (rilpivirine)
- Intelence® (etravirine)
- Rescriptor® (delavirdine)
- Sustiva® (efavirenz)
- Viramune® (nevirapine)
Protease Inhibitors (PIs)
The third group of drugs is the protease (pronounced "pro-tee-ase") inhibitors (PIs).
Once HIV has infected a cell and made copies of itself, it uses an enzyme called protease to process itself correctly so it can be released from the cell to infect other cells. These medicines work by blocking protease.
Nine PIs are available:
- Aptivus® (tipranavir)
- Crixivan® (indinavir)
- Invirase® (saquinavir)
- Kaletra® (lopinavir + ritonavir combined in one tablet)
- Lexiva® (fosamprenavir)
- Norvir® (ritonavir)
- Reyataz® (atazanavir)
- Viracept® (nelfinavir)
Note: Many PIs are recommended or approved for use only with low-dose Norvir, which "boosts" their effect.
This class of anti-HIV drugs works by blocking an enzyme (HIV integrase) that the virus needs in order to splice copies of itself into human DNA.
- No brand name. (elvitegravir). At this time elvitegravir is available only in a fixed dose combination tablet (see multi-class drugs). Elvitegravir must be "boosted" with the pharmacokinetic enhancers cobicistat or ritonavir.
Chemokine Coreceptor Antagonists (CCR5)
To infect a cell, HIV must bind to two types of molecules on the cell's surface. One of these is called a chemokine coreceptor. Drugs known as chemokine coreceptor antagonists block the virus from binding to the coreceptor.
- Selzentry® (maraviroc)
Fusion or Entry Inhibitors
The fusion or entry inhibitors work by stopping the HIV virus from getting into your body's healthy cells in the first place.
Only one fusion inhibitor is available at present, and it needs to be injected:
- Fuzeon® (enfuvirtide, T-20)
Multi-class drug combinations
At present there are three options that combine drugs from two different groups into a complete HIV drug regimen. A patient prescribed one of these combinations takes only one tablet, once a day. Despite the convenience, these combination tablets are not for everyone--each has specific possible side effects or dosing requirements that should be considered. You and your doctor can decide whether these drug combinations are right for you.
- Atripla® (Sustiva + Emtriva + Viread)
- Complera® (Edurant + Emtriva + Viread)
- Stribild® (elvitegravir + cobicistat + Emtriva + Viread)
Which drugs should you take?
Now that you have learned a little about the types of drugs that are available and how they work, you may be wondering how your VA health care provider will know which medicines you should take.
Anti-HIV drugs are used in combination with one another in order to get the best results. The goal is to get the viral load as low as possible (to levels that are undetectable by standard laboratory tests) for as long as possible.
Anti-HIV medicines do different things to the virus--they attack it in different ways--so using the different drugs in combination works better than using just one by itself. Combinations usually include three antiretroviral drugs. Except in very special circumstances, anti-HIV drugs should never be used one or two at a time. Using only one or two drugs at a time can fail to control the viral load and let the virus adapt (or become resistant) to the drug. Once the virus adapts to a drug, the drug won't work as well against the virus, and maybe it won't work at all.
There is no one combination of HIV medications that works best for everyone. Each combination has its pluses and minuses.
When drugs are used together, the therapy is called combination therapy [or antiretroviral therapy (ART), or highly active antiretroviral therapy (HAART)].
So, how will your doctor know which combination to choose? You and your VA doctor can consider the options, keeping certain things in mind, such as possible side effects, the number of pills you'll need to take, and how the drugs interact with each other and with other medications you may take.
Print out these questions to ask your doctor if you are considering combination therapy.
Why must you stay on the treatment plan?
"Adherence" refers to how well you stay on your treatment plan--whether you take your medications exactly as your VA health care provider tells you.
If you follow your doctor's instructions about how to take your medicine, the anti-HIV drugs will work well to lower the amount of virus in your blood. Taking your drugs correctly increases your likelihood of success.
But, if you miss doses, or don't follow a regular schedule, the level of the drug in your body goes up and down. The virus then has the opportunity to make copies of itself more rapidly. That increases your viral load.
Following your treatment schedule also helps to prevent drug resistance. If you miss a dose, the virus may make new and different types of itself that the drug can no longer combat.
It's challenging for some patients to stick to their HIV drug treatment plan. Most plans involve taking several pills every day, and some of the drugs have unpleasant side effects.
Pop question: True or false. Missing doses and not following a regular schedule can lessen the effect of your HIV medication.
Pop question: True or false. Missing doses and not following a regular schedule can lessen the effect of your HIV medication.
Answer: TRUE. Missing doses and not following a regular schedule can lessen the effect of your HIV medication. It is very important that you stay on your treatment plan and follow your doctor's instructions for taking your medicine.
Questions to ask about each drug
One of the most important things you can do to make sure you take your medicine correctly is to talk with your doctor about your lifestyle, such as your sleeping and eating schedule. If your doctor prescribes a drug, be sure and ask the following questions (and make sure you understand the answers):
- What dose of the drug should be taken? How many pills does this mean?
- How often should the drug be taken?
- Does it matter if it is taken with food, or on an empty stomach?
- Does the drug have to be kept in a refrigerator?
- What are the side effects of the drug?
- What should be done to deal with the side effects?
- How severe do side effects have to be before a doctor is called?
During every visit to your doctor, you should talk about whether you are having trouble staying on your treatment plan. Studies show that patients who take their medicine in the right way get the best results: their viral loads stay down, their CD4 counts stay up, and they feel healthier.
Tips for staying on your treatment plan
Before you start a treatment plan, you should:
- Get your health care provider to write everything down for you: names of the drugs, what they look like, how to take them (with food or not), and how often to take them. This way, you'll have something to look at in case you forget what you're supposed to do.
- With your provider's help, develop a plan that works for you.
Quick Tips: Adherence
- Get a pillbox and fill it at the beginning of each week.
- Take your medicine at the same time each day. (Use a watch with an alarm or get a beeper.)
- Get a medication "diary" or notebook. In it, you can write the names of your drugs, and then check off each dose as you take it. (See the "Resources" section for a sample diary.)
- Plan ahead for changes in your normal routine (for example, if you will be out all day, or if you're going on vacation).
- Make sure you always have enough medicine! Call your VA provider or pharmacist if you are running low.
It is important that you tell your provider right away about any problems you are having with your treatment plan. Keeping a medication diary can help you remember any problems you have.
Deciding whether to continue HIV therapy
Now that you've gone over some of the things you should think about before starting HIV drug therapy, let's look at some of the things you will need to know once you are taking the medicine. These involve drug interactions and drug side effects.
What are drug interactions?
Your anti-HIV medications can be affected by other medicines, including other prescription drugs you are taking and drugs you buy over the counter at a pharmacy. Even herbal therapies and some things found in common foods can affect your HIV medicines.
When one drug affects how another drug behaves, this is called a drug-drug interaction. For example, when taken together, some drugs become less effective or cause side effects.
When something in food affects how a drug behaves, it is called a drug-food interaction. For example, grapefruit juice, taken at the same time as certain drugs, can boost the amount of these drugs in your bloodstream to an undesirable level. Everyone taking anti-HIV drugs needs to be very careful about these interactions. Luckily, many of these interactions are well known to your provider, and can be managed.
Your VA health care provider can give you a list of drugs and foods to avoid, depending on what kind of medicine you are taking. Ask for this information for each drug that you are taking.
Also, be sure that you tell your doctor about every single medication, drug, and herb you are taking--whether you got them by prescription or not.
What are side effects?
Medicines can cause changes (or effects) in the body. Some effects, like making you feel better, are the ones that you want and expect to happen. Other effects are ones that you don't want or don't expect. The effects that you don't want or expect are called side effects.
Almost all medicines may have side effects in some people. Some people take aspirin for a headache, but it gives them an upset stomach. The upset stomach is a side effect of the aspirin. Not all side effects are unpleasant, though. Even the side effects that make you feel sick aren't always bad. Some side effects mean that your medicine has started to work.
Your provider will try to prescribe anti-HIV medicines that fight the HIV virus in your body without causing unpleasant side effects.
How do you deal with side effects?
Some side effects can be hard to deal with. One way to cope with them is to know what to watch out for and have a plan to deal with problems that come up.
That's why you need to talk to your VA provider about the risk of side effects from different drugs, before you start therapy.
At the beginning of any treatment, you go through a period of adjustment--a time when your body has to get used to the new drugs you're taking. Sometimes you'll have headaches, an upset stomach, fatigue, or aches and pains. These side effects may go away after a few weeks or so.
If you notice any unusual or severe reactions after starting or changing a drug, report the side effects to your provider immediately.
More information is available in the Side Effects Guide.
How do you know if the drugs are working?
After you've started taking medicine for your HIV, your health care provider will look at how much HIV virus is in your bloodstream (your viral load) to see how well the drug therapy is working. If the medicines are working, your viral load goes down. You will have less of the virus in your bloodstream. A very important goal of treatment is to reduce the viral load to "undetectable" levels, and to keep it there. "Undetectable" means the viral load is too low to measure using standard laboratory tests.
Other ways you and your provider can see if the drugs are working are:
- Your CD4 count. This number should stay the same or go up if your drugs are working.
- Your health checkups. Your treatment should help keep you healthy and help you fight off infections and diseases.
Should you ever take a 'holiday' from the drugs?
In general, taking a "drug holiday" from your anti-HIV medicine for reasons other than a severe reaction to medications may be harmful to your health. Having said that, your doctor may suggest that you temporarily stop your antiretroviral drugs for certain specific reasons. Be sure to talk with your VA health care provider about this issue if you have questions about it. How you stop taking your anti-HIV drugs safely can be a complicated process.
Remember, just skipping doses without your doctor's instructions is dangerous, and you should never change your treatment plan without talking with your doctor.
Should you ever switch the drugs you're taking?
You should never change the drug plan you're on without talking with your health care provider. This is a very important decision and one that must be made with your VA health care provider.
If you are following your drug therapy plan correctly (taking the right medicines in the right amount at the right time), but the treatment is not working well enough, your provider may consider switching your medicines.
Your provider also may want to change your medicine if you have side effects that are bothering you or if your lab tests show signs of ill effects of the HIV drugs (this is called drug toxicity).
Before changing medicines, you and your VA provider should talk about:
- All the anti-HIV drugs you have taken before and the ones you haven't taken
- Any drug resistance your HIV virus may have
- The strength of the new drugs that your provider recommends
- Side effects that may go along with the new medicines
- How well you will be able to follow the new drug treatment plan
Always be sure to talk with your provider about any changes in your drug treatment.
What if the viral load is undetectable?
If your HIV viral load becomes undetectable (doesn't show up on tests), can you stop treatment?
Having an undetectable viral load, tells us that the anti-HIV medications are working. An undetectable viral load doesn't mean the HIV virus has been eradicated from your body, though. Even though the virus is undetectable in the blood, it is still hidden in other parts of your body, such as the brain, reproductive organs, and lymph nodes. If you stop treatment, the virus will start reproducing again and your viral load will increase, putting your health at risk.
What if your treatment isn't working?
Sometimes the HIV medications don't work. This may occur because the drugs don't completely stop the virus from reproducing. As the virus makes copies of itself, changes (or mutations) sometimes occur. These changes may result in a new strain of the virus that is resistant to the action of the drugs. Sometimes, your provider can do a blood test (called a resistance test, genotype, or phenotype) that can help show which drugs the virus has become resistant to. This can help identify other drugs that might still work against your virus.
Even if a virus is resistant to most or all available drugs (this is very rare), some people can still stay healthy by continuing to take a combination of drugs. Therefore, you should discuss the situation with your doctor rather than just stop taking your medications.
If a person has a strain of HIV that is resistant to most or all available drugs, that person may want to consider joining a clinical trial that is testing new drugs that have not yet been approved by the U.S. Food and Drug Administration (FDA). See Clinical Trials.