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Considerations Before Starting HIV Treatment

Submitted on Sep 15, 2023

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Table of Contents

Preparing for HIV Treatment

Starting Sooner Rather than Later
The Right Health Care Provider
Knowledge About HIV
A Positive Attitude

Preparing for HIV Treatment

Are you living with HIV? If so, treatment with HIV drugs can improve your quality of life and help you
stay healthier longer. But starting treatment is a big decision. To get the most benefit from HIV drugs,
they must be used just the way they are prescribed. Taking your treatment correctly is as important as
which drugs you and your health care provider choose. So, before you get started, it is important to be
prepared and commit to taking your HIV drugs the right way, every day, for your own health. This takes
a combination of the right health care provider, enough knowledge about HIV, and a positive attitude.

Click above to view or download this fact sheet as a PDF slide presentation

Starting Sooner Rather than Later

The results of a study called the START trial have shown once and for all that people living with HIV
who start treatment earlier, while their CD4 counts are still high, have a much lower risk of illness and
death. This includes people living with HIV who feel well. The study showed that taking HIV drugs
earlier reduced the likelihood of developing both AIDS-related and non-AIDS related illnesses. These
results led scientific experts and policy makers to come together in July 2015 and issue a consensus
statement declaring that all people living with HIV should have access to HIV treatment as soon as they
are diagnosed.

Benefits of Starting Early:

A longer life
Having a higher CD4 cell count and keeping it high
Preventing further damage to the immune system
Decreasing the risk of HIV-related and non-HIV-related health problems
Reducing your risk of transmitting (passing) HIV to others (also known as Treatment as
Prevention), including babies (through perinatal transmission, or mother-to-child transmission)
Eliminating your risk of transmitting HIV to your sexual partners if you take your HIV drugs
consistently and your viral load stays undetectable (below the level at which it can be detected
with standard tests).

Risks of Starting Late:

A shorter life
 Having a severely weakened immune system. This can mean that it takes longer to restore your
immune system to full strength and you to full health. Recent studies have shown that delaying
treatment can increase the chances that people living with HIV will develop AIDS and other
serious illnesses.
Having an increased chance of immune reconstitution syndrome (can cause worsening of some
infections when you begin taking HIV drugs and have few CD4 cells)
Passing HIV to others, including sexual partners and babies, if you become pregnant

Treatment Guidelines

Guidelines for HIV treatment are issued by a variety of global and national agencies. They provide a lot
of useful information to help health care providers and people living with HIV decide when to start, what
to start with, and when to change HIV medications. They also help providers and people living with HIV
choose among the many available HIV drugs. Guidelines are written and reviewed regularly by groups
of HIV experts, including researchers, healthcare providers, and community activists.

The US Department of Health and Human Services (DHHS) HIV treatment guidelines recommend that
all people living with HIV take HIV drugs, no matter their CD4 count. Since 2015, the World Health
Organization (WHO) and other organizations agree with that recommendation.

The Right Health Care Provider

Health care providers who spend most of their time on HIV care are
best able to manage this condition.
Ideally, you and your health care provider are a team working together to make the best treatment
decisions for you. It is also ideal for you to be able to choose among different providers. Unfortunately,
for many people living with HIV, neither of these situations is true. Becoming informed about HIV
treatment can help empower you to discuss your condition and your options with your health care
provider, whether you were able to choose that person for yourself or not.

Even if you are limited to a specific health care provider, you may want to ask yourself a few questions
about your relationship with them:

Can I be totally honest with my provider?

Are they available when I have questions?
Do they take my concerns seriously?

If so, great! If not, you may want to make some changes. Although it can be difficult, you may want to
ask your provider directly if they will be available for questions. If you do not feel fully respected or
taken seriously, you may want to talk to your provider. You may want to tell them that you are
concerned that your relationship is not as strong as it could be because of how you feel they are
behaving. It may help to write down the questions you would like to ask your health care provider before
you go to visits. Finally, it is always important to answer your provider's questions with the truth, not
with what you think they want to hear. If these steps still do not work, it may be time to look for another
provider if that is possible.

If possible, it is also wise to have a health care provider who is an HIV specialist. Health care providers
who spend most of their time on HIV care are best able to manage this condition. Helpful suggestions
for HIV specialists near you can come from friends and/or ASOs (AIDS Service Organizations), or by
checking with the American Academy of HIV Medicine (AAHIVM). To find an ASO in your area, click
here or look at AAHIVM's Referral Link. You can also check with the International Association of
Providers of AIDS Care.
Knowledge About HIV
The Basics

HIV is a virus that destroys CD4 cells. CD4 cells are part of the body's immune system. The immune
system protects the body from germs, such as bacteria, fungi, and viruses. When the immune system
loses too many CD4 cells, it becomes weak and can no longer fight off germs, leading to opportunistic
infections (OIs) that can cause serious illness or death.

HIV Treatments

Scientists have developed drugs that stop HIV from making copies of itself (multiplying) in your body.
These drugs are grouped into classes. Each class of drugs works to stop HIV at a certain point in its life
cycle. There are several classes of HIV drugs:

Entry inhibitors (including fusion inhibitor, attachment inhibitor and CCR5 antagonist)
Post-attachment inhibitor
Integrase inhibitors
Nucleoside/nucleotide reverse transcriptase inhibitors ("nukes" or NRTIs)
Non-nucleoside reverse transcriptase inhibitors ("non-nukes" or NNRTIs)
Protease inhibitors (PIs)
Capsid inhibitor
Boosting agents

HIV drugs are always used in combination to attack the virus at different points in its life cycle. This
usually means using drugs from at least two different classes. Combining HIV drugs is the best way to
reduce the amount of HIV in your blood (viral load). Fixed-dose combinations include more than one
HIV drug in a single pill. Our fact sheet on HIV Drugs and the HIV Lifecycle has more information about
HIV medications.

Baseline Blood Tests

Before you start HIV treatment, your health care provider will take blood for a number of tests. These
are your original, or baseline, tests. Future test results will be compared to your original results to see
how you are doing and how well your treatment is working.

CD4 cell (T-cell) count: The CD4 count checks the strength of your immune system. After you start
HIV treatment, if your CD4 count is low, you should see it go up. Your CD4 count should be checked
every three to four months, if possible. Once this count has become stable, it should be checked every
six months to one year.
Viral load test: The viral load test measures the amount of HIV in your blood. After you start HIV
treatment, you should see your viral load go down. Your viral load should be checked about a month or
so after you start or change HIV drugs. After that, it should be checked every three to four months until
it becomes undetectable in your bloodstream (there is too little virus to detect with standard tests).
Once your viral load stays undetectable, it should be checked every six months.
Resistance test: The resistance test helps determine which drugs are likely to work against the strain
of HIV that you have. Experts recommend that everyone get a resistance test before starting or
changing HIV treatment.
Other tests to check your overall health: These include complete blood count (CBC), chemistry
screen, lipid profile (cholesterol and fat), liver tests, and glucose (blood sugar). Your health care
provider should talk with you about how often these tests need to be done.

Treatment Goals
 To get your viral load as low as possible for as long as possible
To preserve or improve the health of your immune system by increasing the number of CD4
cells
To improve your quality of life and reduce illness
To reduce your risk of passing (transmitting) HIV to others

Adherence

Whenever you start treatment, you need to take your drugs on schedule and exactly as prescribed. This
is called adherence. To get the most benefit from HIV therapy, good adherence is required. This is so
because HIV drugs need to stay at a certain level in your body to fight the virus. If the drug level falls,
HIV may have a chance to fight back. Skipping doses, not taking the drugs on time, and not following
food requirements can all cause your drugs to be less effective or to stop working altogether.

Resistance

After starting HIV drugs, you should see your viral load decrease and your CD4 cells increase. Over
time, however, some people see their viral load increase, even though they are still taking HIV drugs.

When a drug can no longer fight HIV effectively, the virus has become "resistant" to that drug. If you
develop resistance, you will likely have to change some of the drugs in your regimen (the combination
of different medications that you are taking). If your viral load goes up while you are still taking your HIV
drugs, your health care provider should offer you a resistance test. This test will help your provider find
out which drugs are not working and help choose ones that will. For some people with resistance to
many HIV drugs, it may be difficult to find a new combination.

The best way to fight resistance is to take your HIV drugs exactly as directed.

A Positive Attitude
When you think about starting treatment, it is important to have a good attitude. It can be helpful to
know that:

starting treatment is the right decision for you

the HIV drugs will help you fight the virus
you can take your medications the right way

Put together a support system that may include your health care
provider, social workers, case managers, family, and/or friends
It may also help to think about the reason why you are starting treatment – to keep yourself in good
health, whether for your own sake or for the good of your family, friends or community. Think about it
this way: when you have a urinary tract infection, your provider does not wait until it has spread to your
kidney or blood stream before treating you. The same is true for acquiring HIV. You need not wait until
your immune system is damaged before taking HIV drugs. Newer HIV drugs are much easier on your
body and have fewer side effects than the older drugs.

When you think about starting treatment, it is also important not to go it alone. Put together a support
system that may include your health care provider, social workers, case managers, family, and/or
friends. You may also want to consider joining a support group of other people living with HIV. Many
people living with HIV find support through online communities. Our global community of women
sharing their stories of living with HIV is called A Girl Like Me.
 Whatever you decide to do, it is important that you keep going to your health care provider for regular
checkups; discuss any side effects you may be experiencing so that they can be treated; and remain
focused on staying healthy.

Additional Resources
Select the links below for additional material related to considering treatment.
Starting HIV Treatment (POZ)
Newly Diagnosed With HIV (TheBody.com)
Get Set for HIV Treatment (aidsmap, personalized tool)
Starting ART – and Using Meds for the First Time (i-base)
My First Pill: Starting HIV Treatment for the First Time (TheBody.com)
HIV Treatment: When to Start HIV Medicines (HIVinfo)
Vancouver Consensus Statement Calls for Early Access to Treatment and PrEP Worl…
Your Guide to HIV Treatment: Starting Treatment (CATIE)
Activists Worldwide Call for Immediate HIV Treatment (Health-e News, South Afri…
Starting HIV Treatment: 7 Important Questions and Answers (TheBody.com)
What Does an HIV Treatment Plan Look Like (WebMD)
Starting HIV Treatment (aidsmap)
Treatment Decisions for HIV (US Department of Veterans Affairs)
When to Start HIV Treatment (Terrence Higgins Trust, United Kingdom)
How Does HIV Treatment Work? (Be in the Know)

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