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HIV i-Base

Introduction

January 2009


Introduction

Guide to HIV, Pregnancy and Women's HealthThis is the fourth edition of the i-Base pregnancy guide. Since the last edition there has been an update of the pregnancy guidelines issued by the British HIV Association (BHIVA), and these changes have been reflected in our guide.

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The excellent news is, with good management focusing on a woman's health and choice, there is little risk of transmission to her child for an HIV-positive mother delivering in the UK today.

Our most recent reports show a one in a thousand transmission rate for women receiving HAART with an undetectable viral load of less than 50 copies/mL whether she has a planned vaginal or planned Caesarean delivery. This is the lowest reported and represents a significant advance in the information available to women planning a family or already pregnant.

The similarly low transmission rate seen in selected women with very low viral load who chose to receive AZT monotherapy and deliver by planned Caesarean section is important too, as it confirms that this remains an option.

We will explain what all these options mean and when they are appropriate in our guide.

We have also included important new information for couples where one partner is HIV-positive and the other is HIV-negative. This is based on the Swiss Statement, which suggests that by using HIV treatment to reduce viral load to undetectable the risk to the HIV-negative partner from natural conception is close to zero. But the details of the Statement are important -- see The Swiss Statement.

Excellent news too is that people with HIV are living longer and healthier lives so an HIV-positive mother in the UK today can also expect to be around to watch her child grow up!

British HIV Association(BHIVA) and Children's HIV Association (CHIVA) Guidelines for the Management of HIV Infection in Pregnant Women 2008 are online at: www.bhiva.org/cms1221368.asp


Background and General Questions

This booklet aims to help you get the most out of your own HIV treatment and care if you are considering pregnancy or during your pregnancy.

We hope that the information here will be useful at all stages?before, during and after pregnancy. It should help whether you are already on treatment or not. It includes information for your own health and for the health of your baby.

If you have just been diagnosed with HIV

You may be reading this booklet at a very confusing and hard time in your life. Finding out either that you are pregnant or that you are HIV-positive can be overwhelming on its own. It can be even more difficult if you find out both at the same time.

Before reading this booklet, you may have never before known or read anything about HIV. As you will see, both pregnancy and HIV care involve many new words and terms. We try our best to be clear about what these terms really mean and how they might affect your life.

On an optimistic note, it is likely that no matter how difficult things seem now, they will get better and easier. It is very important and reassuring to understand the great progress made in treating HIV. This is especially true for treatment in pregnancy.

There are lots of people, services and other sources of information to help you. Some useful contact details are included below.

The advice that you receive from these sources and others may be different than that given to pregnant women generally. This includes information on medication, Caesarean section (C-section) and breastfeeding.

Most people with HIV have a lot of time to come to terms with their diagnosis before deciding about treatment. This may not be the case if you were diagnosed during your pregnancy. You may need to make some difficult decisions more quickly.

Whatever you decide to do, make sure that you understand the advice you receive. Here are some tips if you are confused or concerned as you consider your options:

  • Ask lots of questions.
  • Take your partner or a friend with you to your appointments.
  • Try to talk to other women who have been in your situation.

The decisions that you make about your pregnancy are very personal. Having as much information as possible will help you make informed choices.

The only "correct" decisions are those that you make yourself. You can only make these after learning all you can about HIV and pregnancy and with your healthcare team.

Can HIV-positive women become mothers?

  • Combination therapy or HAART (Highly Active Antiretroviral Therapy) are terms used to describe a strategy of using three or more drugs to treat HIV.
  • Anti-HIV drugs are not effective for treating HIV individually (monotherapy), but they can be very effective in combination.
  • For more info see the i-Base Introduction to Combination Therapy.
Yes, with HIV treatment. Women around the world have safely used antiretroviral drugs in pregnancy now for over 10 years. Currently this usually involves taking at least three anti-HIV drugs, a strategy called combination therapy or HAART. These treatments have completely changed the lives of people with HIV in every country where they are used.

Treatment has had an enormous effect on the health of HIV-positive mothers and their children. It has encouraged many women to think about having children (or having children again).

Your HIV treatment will protect your baby

The benefits of treatment are not just to your own health. Treating your own HIV will reduce the risk of your baby becoming HIV-positive to almost zero. Without treatment, about 25% of babies born to HIVpositive women will be born HIVpositive. One in four is not good odds, though, especially because modern HIV treatment can almost completely prevent transmission.

How is HIV transmitted to a baby?

The exact way that transmission from mother to baby happens is still unknown. However, the majority of transmissions occur near the time of, or during, labour and delivery (when the baby is being born). It can also occur through breastfeeding. (See Feeding Your Baby: Risks and Options)

Certain risk factors seem to make transmission much more likely. The strongest of these is the extent of the mother's viral load.

Guide to HIV, Pregnancy and Women's HealthSo, as with treatment for anyone with HIV, one important goal of therapy is to reach an undetectable viral load. This is particularly important at the time of delivery. The time between when your waters break and the actual delivery is also a risk factor for transmission. This period is called "duration of ruptured membranes".

Other risk factors include premature birth and lack of prenatal HIV care. Practically all risk factors point to one thing: looking after mother's health.

  • Transmission of HIV is when the virus passes from one person to another. When this is from mother to baby it is called mother-to-child (MTCT), perinatal or vertical transmission.
  • Children who become HIV-positive in this way are called "vertically infected" children.
 

  • Viral load tests measure the amount of virus in your blood. The measurements are in copies per millilitre -- for example 20,000 copies/ml.
  • Viral load is one measurement of the progression of HIV. The goal of treatment is to get your viral load to be undetectable to below 50 copies/ml.
  • If a mother's viral load is undetectable when her baby is born, the chance of mother-to-child transmission is almost zero.
 
Resistance

  • If you just take one drug (monotherapy) or a combination of drugs that are not strong enough to get your viral load undetectable, then HIV can become resistant to the drugs.
  • If you are resistant to a drug it will no longer work as well -- or it may not work at all.
  • To avoid resistance, you need to take a combination of at least three antiretroviral drugs.
  • It is important to avoid resistance in pregnancy.
  • However using short term monotherapy with AZT to prevent mother to child transmission (this is only used in some cases where a mother has a very low viral load) carries a very low risk of resistance.
  • If you just take one drug (monotherapy) or a combination of drugs that are not strong enough to get your viral load undetectable, then HIV can become resistant to the drugs.
  • If you are resistant to a drug it will no longer work as well -- or it may not work at all.
  • To avoid resistance, you need to take a combination of at least three antiretroviral drugs.
  • It is important to avoid resistance in pregnancy.
  • However using short term monotherapy with AZT to prevent mother to child transmission (this is only used in some cases where a mother has a very low viral load) carries a very low risk of resistance.
Some key points to remember:

  • The mother's health directly relates to the HIV status of the baby.
  • Whether the baby's father is HIVpositive will not affect whether the baby is born HIV-positive.
  • The HIV status of your new baby does not relate to the status of your other children.

Are pregnant women automatically offered HIV testing?

It is now recommended in many parts of the world. In the UK healthcare providers have been required since 1999 to offer and recommend that all pregnant women have an HIV test. This is now part of routine prenatal care.

It is important for a woman to take an HIV test when she is pregnant. Her ability to look after her own treatment, health and well-being is improved when she knows if she has HIV or not. This knowledge also means that she can be aware of how she can protect her baby from HIV, if she tests positive.

How do HIV drugs protect the baby?

Reducing the risk of a baby becoming HIV-positive was an early benefit of anti-HIV therapy.

PACTG 076 is the name of a famous joint American and French trial whose results were announced in 1994. This was the first study to show that using the drug AZT could protect the baby. Mothers took AZT before and during labour, and the baby received AZT for six weeks after birth. This reduced the risk of the baby becoming HIV-positive from 25% to 8%.

After 1994, this strategy was recommended for all HIV-positive pregnant women. Even further advances have been made over the last few years, especially since combination therapy became more common the late 1990s. Transmission rates with combination therapy are now less than 1%.

AZT is still the only drug licensed for use in pregnancy. There is also a lot of experience of using it. Many doctors still prefer to include it in a woman's combination if she is pregnant. However, if you have resistance to AZT, you should not use this drug. Other reasons some women do not use AZT might be that they find the drug's side effects very difficult to manage or that they are already on an effective, stable combination that does not contain AZT.

In these cases, it is OK to use a combination without AZT. Transmission rates of mothers using combinations without AZT are similar to those that contain AZT. A general rule of thumb is "What's best for mum is best for baby".

It is important to remember though that despite huge advances and therapy for pregnant women is still at a relatively early stage. Many aspects of its use are still unproven. You will need to discuss the benefits and risks of treatment with your healthcare team. This will include known and unknown short- and long-term factors.

Is it really safe to take HIV medicines during pregnancy?

Pregnant women are generally advised to avoid taking any medications. However, this is not the case when considering the use of HIV treatment during pregnancy. This difference can seem confusing.

No one can tell you that it is completely safe to use HIV drugs while you are pregnant. Some HIV medicines, for instance, should not be used during that period. At the same time, however, many thousands of women have taken therapy during pregnancy without any complications to their baby. This has resulted in many HIV-negative births.

During your prenatal discussions, you and your doctor will weigh up the benefits and risks of using treatment to you and your baby.

  • CD4 cells are a type of white blood cell that helps our bodies fight infection. These cells are also the ones that HIV infects and uses to make copies of itself, and then to spread further.
  • Your CD4 count is the number of CD4 cells in one cubic millimetre (mm3) of blood. Your CD4 count is one measurement of the stage of your HIV.
  • CD4 counts vary from person to person, but an HIV-negative adult would expect to have a CD4 count within the range of 400-1,400 cells/mm3. Some factors, such as being tired, ill or pregnant, can cause temporary drops in a person's CD4 count.
  • A CD4 count below 200 cells/mm3 is considered to be low, and nearly all treatment guidelines recommend starting treatment before the count reaches that level. You are more vulnerable to infection if you have a CD4 count below 200 cells/mm3.
 

  • Prenatal refers to the period before a baby's birth, the time in which the foetus (developing baby) grows in the uterus.
  • Opportunistic infections (OIs) are infections that can cause serious illnesses in people with low CD4 counts, as is the case with many HIV-positive people. OIs usually do not occur in people with healthy immune systems.

    Examples of OIs that occur in HIV-positive people (generally when they are not using combination therapy) are PCP (pneumocystis pneumonia), CMV (cytomegalovirus) and MAC (Mycobacterium Avium Complex) -- see OI Prevention and Treatment During Pregnancy.

Your healthcare team also has defect registry. This has tracked birth defects in babies exposed to antiretroviral drugs since 1989. The registry can be found at the following website: www.apregistry.com.

So far, the registry has only seen a small increase in the type or rate of birth defects, compared to the babies born to mums not using HIV drugs, for the drug ddI.

Will being pregnant make my HIV worse?

Pregnancy does not make a woman's own health get any worse in terms of HIV. It will not make HIV progress any faster.

However, being pregnant may cause a drop in your CD4 count. This drop is usually about 50 cells/mm3, but it can vary a lot. This drop is only temporary. Your CD4 count will generally return to your pre-pregnancy level soon after the baby is born.

The drop should be a concern, however, if your CD4 falls below 200 cells/mm3. Below this level, you are at a higher risk from opportunistic infections (OIs). These infections could affect both you and the baby, and you will need to be treated for them immediately if they occur. In general, pregnant women need opportunistic infections as people who are not pregnant.

Also sometimes if you start taking treatment in pregnancy your CD4 count many not increase very much even though your viral load goes down. If this happens don't worry, your CD4 count will catch up after the baby is born.

HIV does not affect the course of pregnancy in women who are receiving treatment. The virus also does not affect the health of the baby during pregnancy, unless the mother develops an OI.


Additional Info

This booklet is about HIV and pregnancy. Other important aspects of HIV treatment and care are described in detail in the other i-Base guides, including:

  • Introduction to Combination Therapy
  • Guide to Changing Treatment
  • Avoiding and Managing Side Effects
  • Hepatitis C for people living with HIV

These free booklets provide additional information on the basics out of your treatment. They also further explain words and phrases introduced here that still may be unfamiliar or confusing, including CD4, viral load and resistance.

We hope that you will use all of these booklets together. Your clinic may have copies of any or all of them. You can also order through our website: www.i-Base.info

Information phoneline

i-Base provides a specialised free telephone information support service at the following telephone number: 0808 800 6013. If you want to talk to someone about HIV treatment and pregnancy, please give us a call and we will try to help. The service is available from 12-4 p.m. on Monday, Tuesday and Wednesday.

We also offer an information service by e-mail from: info@i-Base.org.uk

i-Base can answer your questions by email or online: questions@i-Base.org.uk www.i-base.info/questions

Other useful contact information

Body and Soul
Telephone: 020 7383 7678
www.bodyandsoul.demon.co.uk

Positively Women
Telephone: 020 7713 1020
www.positivelywomen.org.uk

International Community of Women (ICW)
www.icw.org

British pregnancy and treatment guidelines
www.bhiva.org/

U.S. pregnancy and treatment guidelines
www.aidsinfo.nih.gov/guidelines/

Your clinic should have a list of local support services.


This article was provided by HIV i-Base. It is a part of the publication Guide to HIV, Pregnancy and Women's Health.
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