17 Top Questions About Starting HIV Treatment

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This is an adapted selection from "Introduction to ART," a booklet published by HIV i-Base, a British treatment activist group, which is also available in a pocket version.

What Is ART and What Are ARVs?

ART stands for antiretroviral treatment. It is also called therapy or combination therapy or HIV treatment.

HIV drugs are called antiretrovirals (ARVs) because HIV is a type of virus called a retrovirus. ART nearly always includes at least three active drugs. Some pills contain more than one drug and some single pills contain a complete combination.

Does ART Really Work?

ART has reduced HIV-related deaths and illnesses in every country. More than 15 million people are now on treatment worldwide. ART works for adults and children, for women, men and transgender people. It works no matter how you were infected, whether this was sexually, through injecting drug use, at birth, or by blood or blood products.

Taking drugs exactly as prescribed reduces the virus in your body to tiny amounts. Even though you will still be HIV positive, ART reduces the chance that you can transmit HIV. Some cells in your body will always contain HIV. But research to find a cure might even overcome this in the future.

Does Everyone Need ART?

Mostly, yes. We now know that HIV can cause serious problems even with a strong immune system. Treatment is very effective and easy to take. It often involves only one or two pills a day.

Across the world, guidelines differ but the United States guidelines say People with HIV should begin ART as soon as possible.

UK 2015 guidelines say you can begin ART whenever you are ready. For some people this will be straight away and others might take more time. Timing depends on your individual situation and whether you need other test results. Even in your first appointment, your HIV doctor should talk about ART.

What About Side Effects?

ART today has a very low risk of serious side effects. Mild side effects are more common when you first start. These are usually easy to manage and improve within the first few weeks. If side effects are difficult or do not improve, you can change to other drugs. Your quality of life should be as good or better on ART than before you started.

How Do HIV Drugs Work?

HIV drugs stop the virus from making copies of itself. This reduces viral load to very low levels. Your CD4 count then has a chance to grow stronger again. When not on treatment, your immune system works in overdrive. HIV infects CD4 cells and makes more virus. Your body produces new CD4 cells to fight the virus. Then HIV uses these new cells to produce more virus. It is like a dog chasing its own tail. Over time, and without ART, your immune system gets worn out.

How Long Will the Drugs Work?

As long as you do not develop drug resistance, the same drugs can work for years or even decades. This involves getting viral load to undetectable (less than 50 copies/mL). This is also why it is important to take your drugs on time, to follow advice on taking with or without food, and to not miss doses.

Around 19 out of every 20 people (95%) in the UK whose viral load stays undetectable for the first year, will continue to be undetectable for each following year.

Can I Change Drugs?

Yes, this is usually easy.

Although most people do well on their first choice, if it is difficult you can change one or all or the drugs. This will not harm your long-term health. It will not reduce your treatment options. You can still use the same drugs in the future. You have many choices, especially if your viral load is already undetectable. You do not have to put up with difficult side effects.

For most people it is often better to see whether it gets easier after the first weeks or month. A few people may change quickly, even after only a few days. Everything in HIV care is individual.

Can I Stop Treatment?

If you have problems with ART, do not stop taking your drugs without first speaking with your doctor. Contact your HIV clinic to book an early appointment. Unless there is a medical need to stop, taking a break in ART is not usually recommended. Staying on ART will generally be better for your long term health. It will keep your CD4 count high and keep HIV under control.

Can I Stop ARTs?

Stopping ART is not generally a good idea.

  • Your viral load is likely to increase within days. Each time you stop there is a risk of drug resistance.
  • Your CD4 count is likely to drop. It will be more difficult to recover when you restart ART.

If you really want to take a break, then first talk to your doctor. If this is because side effects are difficult or you don't like the food advice, there are other drugs that might be better. If you still want to stop, your HIV doctor can tell you how to do this as safely as possible.

What About if I Have Been Doing Well Without ART?

The 2015 guidelines recommended that everyone can benefit from ART. This means that some people will be now be thinking about ART earlier than they expected, because the advice from their doctor has changed.

Previous guidelines included the option to wait until the CD4 count was 350. If your CD4 count is still above 500, it is still okay to take time to think about this. The risk of complications at high CD4 counts is still relatively low. Also, some providers may be slow in making changes depending on where you are treated.

In general though, your doctor is right to be talking about starting ART and this is good information.

What About Slow Progressors?

The range of responses to HIV has always been very wide. Some people become ill within 1 to 2 years of infection. Others can have a strong immune response that lasts for many years. If your CD4 count stayed above 500 for more than ten years without ART you a long-term slow progressor (LTSP). If viral load is also undetectable, this is called an elite controller (EC).

The benefits of ART are now thought likely to be important for people with LTSP and EC responses. This is because HIV may have been affecting other parts of your body than just your CD4 count.

Does ART Always Work?

Nearly everyone can get an undetectable viral load on ART. If you do not get a full response it can be for one (or more) of the reasons below:

  • Drug interactions
  • Side effects
  • Adherence
  • Drug resistance
  • Choice of drugs

Knowing a little about each issue is good before starting ART. With all these factors covered, if you have a good doctor and you take your drugs carefully, everyone starting ART should be able to get an undetectable viral load.

How Often Should ART Be Reviewed?

Your doctor should review your treatment every year.

New research can change the way that ART is used. The drugs that your doctor prescribes today may be different from last year. And they may be different again next year. This isn't just because of new drugs or formulations. It is because of better understanding about many things:

  • How the drugs work.
  • Why drugs sometimes do not work.
  • The impact of HIV when not on treatment.
  • Long-term safety of drugs.

Should I Enter a Study?

Many HIV clinics are research centers and you may be asked to join a study. Research is essential to improve how we use both new and existing drugs.

If you are interested, take time to find out about the details. It is your choice whether to join a study. You should not feel pressured into taking part. Ask about the alternatives to the study treatment. Ask what advantages or risks the study offers over existing care. You can ask for advice from HIV organizations.

Your future care will not be affected if you decide not to join a study. However, well-planned research studies can often include closer monitoring and care than your regular clinic. This may mean a few more clinic visits.

What About Drug Interactions, Including Alcohol and Recreational Drugs?

Some HIV drugs interact with recreational and street drugs, methadone, vitamins and supplements and over-the-counter medicines.

Interactions can be complex. They can increase or decrease levels of the HIV drugs or the other drugs. It is therefore important that your HIV doctor and pharmacist know about other drugs or supplements that you take, even if you use them rarely and even if they are not legal. Your doctor will treat this information in confidence.

Although alcohol does not interact with HIV drugs, the side effects of alcohol might lead to missing doses. This is because alcohol can change your mood, priorities and sense of time. It is easy to forget your HIV meds including if you oversleep the next day. For these reasons, people who drink more alcohol have a higher risk of ART failure. This is another thing that it is good to talk about with your doctor.

What About a Cure?

The current drugs are a treatment, but they are not a cure.

Even people who have an undetectable viral load for years, still have small amounts of HIV in their body. This HIV is mainly in CD4 cells that are resting. Most of your immune cells are meant to be resting. These cells are not in your blood but in lymph nodes. The resting cells are like books on the shelves in a reference library. When they become active in response to an infection, it is like someone taking the book they need off the shelves. The HIV in resting cells is why curing HIV is so difficult. These cells might sleep for 50 years -- or wake up at any time.

This is why you need to continue taking ART.

Research into the search for a cure for HIV is making exciting progress, though this is likely to still take many years. Even if a cure takes a long time, if you take your drugs and look after your health, you are likely to live into old age.