This page gives you information on some of the family issues around HIV, and where you can seek help and advice.
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Family Issues
I am a woman living with HIV, am I likely to be affected differently to men?
Women face many of the same concerns and issues as men living with HIV, such as concerns around their health, disclosure, discrimination and financial worries. However there are some areas relating to HIV that are particular to women, or affect them differently to men.
HIV can affect your menstrual cycle, particularly if you have a low CD4 count, leading to heavy or irregular periods. It can also affect your fertility, in some cases leading to an early menopause. Women living with HIV are more likely to have gynaecological problems, so it is important that you have regular sexual health screening and annual smear tests.
If you are on treatment you may be unable to use some hormonal contraceptives such as the pill, so it's necessary to get some advice on possible drug interactions. There is some evidence to suggest that women experience body fat changes as a result of some HIV medication differently to men, experiencing more fat gain in their breasts and waists. Women have been less likely to be included in clinical trials on HIV medication to men, so it can be difficult to know about potential differences in side effects.
Many women after an HIV diagnosis go on to have fulfilling emotional and sexual relationships. However there are some who fear or experience gender based violence and may stay in abusive relationships fearful their partner may disclose their HIV status. If you experience domestic abuse, there are organisations that can offer support and advice, such as The National Centre for Domestic Violence.
You can get further information from NAM's booklet HIV and Women. Positively UK offers support, information and runs a series of groups for women living with HIV. Pozfem is the national network of women living with HIV, membership is open to all HIV positive women. The SHE Programme offers peer support sessions and an information website for women living with HIV in the UK.
What can I do to reduce the risk of transmitting HIV to my baby?
Prevention of mother to child transmission of HIV in the UK has been very succesful. If you take HIV treatment during your pregnancy and your viral load becomes undetectable, the risk of transmitting HIV to your baby is less than 1%. Without treatment the risk of transmitting HIV is much higher so it's important that you discuss your HIV status and pregnancy as soon as possible wiith your HIV consultant.
If you are already on HIV treatment it's likely that you will be recommended to stay on your current drug combination. If you aren't yet taking HIV treatment, when you need to start during your pregnancy will depend on your health, so it's important you discuss this with your HIV consultant as soon as possible.
The type of delivery recommended to you depends on your viral load. If you have an undetectable viral load 36 weeks into your pregnancy, a vaginal delivery is now often recommended, although you can still choose to have a caesarean section. If you have a detectable viral load or didn't take HIV treatment during your pregnancy a C-section is recommended, normally at 38 weeks.After the birth, your baby is likely to be given liquid HIV treatment for 4 weeks. Your baby will be tested to see if they have contracted HIV, but this is unlikely, particularly if you have an undetectable viral load.
HIV can be transmitted to your baby through breast feeding, so it's strongly recomended that you formula feed your baby exclusively. You may be entitled to help with the cost of formula milk if you have a very low income. You should discuss this and any worries you have about not being able to breast feed with your clinic.
You can find out more about pregnancy and HIV in I-Base's resource HIV pregnancy and women's health or NAM's booklet HIV and women. You can seek advice and support from Positively UK .
How will HIV affect my child?
Most women are tested for HIV during pregnancy. For women living with HIV who take anti-HIV medication during pregnancy, the risk of transmitting HIV to their baby is very low, less than 1%. However there were still 102 children born with HIV in the UK in 2010 and around 1200 children currently receiving care for HIV, many of whom were born abroad. Children diagnosed with HIV today who have access to treatment can expect to live long fulfilling lives. There are young adults born with HIV who are now having children of their own.
It's very important that children living with HIV receive the right treatment and care. Your child will need regular tests and the decision on when to start treatment will depend on their health. HIV treatment and care for children is usually provided at specialist children's HIV clinics, with all of the healthcare team having expertise in this area. Some hospitals have specialist clinics for teenagers and help with the transition into adulthood. There are guidelines on when to tell your child they have HIV, most children are told by the time they are 12. Your child's doctor or nurse will talk to you about this and will give you help and advice during this process.
There are organisations that offer help, support and advice for children and young people living with HIV including Body and Soul and Children With Aids Charity (CWAC). The Children's HIV Association (CHIVA) has a useful interactive website with sections for children living with HIV as well as for their parents. Nam's booklet HIV and Children provides information on treatment and care for HIV positive children. Positively UK has a new service for 16 -24 year olds living with HIV.
There are 20,000 children in the UK who are affected by HIV, meaning someone in their immediate family or household is living with HIV. Body and Soul offers support, services and advice for children who are affected by HIV. The CHIVA website has a section for parents living with HIV whose children are HIV negative, including information on how and when to talk to your child about your HIV status.
Where can I seek advice on conception?
Conception can be a particular area of concern for people living with HIV if their partner is HIV negative. The standard recommendation for such couples is to practice safer sex (using a condom) to prevent HIV transmission from one partner to the other, but, naturally, this generally also prevents pregnancy.
However, there are a range of options available to assist couples to conceive safely, including self-insemination, donor sperm and sperm-washing as discussed in Safer Conception: Assisted reproduction options for people living with HIV. These assisted reproduction techniques can help achieve safer, successful conception for sero-discordant and -concordant couples alike. However, not all assisted conception options are widely available to people living with HIV across the UK, and in many cases will be prohibitively expensive.
The role of HIV treatment is also being increasingly discussed as a preventive tool for HIV transmission, and studies have shown that HIV transmission rates are extremely low when a person is adhering to treatment, their viral load is undetectable and both they and their partner are STI free. NAT recommends discussing this with your doctor and you can also read our report, HIV treatment as prevention - Towards a Consensus on the Impact of ART on HIV Prevention Strategies, for background information.