Perinatal HIV is incidence of transmission from a mother living with HIV to a child during pregnancy, birth, or through breastfeeding. Providing testing and treatment of pregnant women provides an opportunity to prevent HIV transmission that is unlike any other.
However, there continues to be perinatal HIV transmission each year and PACPI is working to ensure that all women are tested and treated as early in pregnancy as possible. Attending prenatal care visits also reduces risk of transmission by providing multiple opportunities for early detection and for beginning treatment.
Early detection and treatment in pregnancy can reduce risk of transmission from mother to baby to less than 1%.
Testing in Pregnancy
Getting tested during each pregnancy is important because, if your result is positive, treatment can improve your health and greatly lower the chance that you will pass HIV to your infant before, during, or after birth. Treatment is most effective when started as early as possible during pregnancy. However, there are still great health benefits to beginning preventive treatment even during labor or shortly after the baby is born.
Risk of Passing HIV to Baby
There have been many advances in the prevention of HIV transmission from mother to child. Without any treatment, the risk of transmission is one in four, about 25% chance. Luckily, there are steps that can be taken to reduce the risk to less than 1%.
Preventing HIV transmission to the baby takes a lot of steps. It is most important that you see your doctor regularly so that they can monitor your health and the pregnancy. Some of the main steps to prevent transmission are:
- Prenatal care (attending all visits)
- Specialty HIV care (all visits)
- Anti-HIV drugs (during pregnancy, at delivery and for the baby)
- Formula feeding (Breastfeeding is strongly discouraged as this increases the risk of transmission)
Finding a Doctor
HIV can sometimes be complicated to treat. There are doctors who specialize in treating people living with HIV. You can get a referral to an HIV specialist in your area by calling 1-800-439-4079.
Your HIV status is your business. You do not have to tell your family, your friends, your employer, or your landlord that you are HIV positive. The only people you are required to tell are people you have sex with or share needles with. No one who knows or learns your HIV status is allowed to tell anyone else without your explicit written permission.
You will want to tell your medical providers about your HIV status so that they can make sure you have the best care possible. There are sensitive providers who specialize in providing care to pregnant women living with HIV. Call the Illinois 24/7 Perinatal HIV Hotline at 1-800-439-4079 to get a referral to a provider near you.
Medications & Labor and Delivery
Your doctor will recommend a regimen of medications that is best for you and your lifestyle. While there are some side effects to the medications, they usually only last for a short time and are well worth the benefit of preventing transmission to your baby! Please tell your doctor about ALL side effects from your medicines and they may be able to help manage those side effects for you.
The best decisions about route of delivery are made together between a woman and her doctor. Certain obstetrical factors about your previous pregnancies and the current pregnancy (non-HIV related) will be weighed in the decision.
In Illinois, all pregnant women are eligible for Medicaid – regardless of their legal status in this country. If a woman is uninsured prior to pregnancy, she should go to her nearest Public Aid office to apply for a medical card as soon as possible. Medicaid covers all necessary HIV medications. The AIDS Drug Assistance Program, or ADAP, is a federally funded program that also covers HIV medications for those individuals without insurance or individuals with insurance who meet the financial criteria. This program varies from state to state, but in Illinois there is no waiting list of ADAP applicants. While pregnant in Illinois, women covered by Medicaid should not need ADAP to cover medications, but this may be a helpful resource post-partum, if Medicaid is discontinued.
We recommend that you seek out individual help or a support group (online or in person). HIV and pregnancy can be really isolating. There are professionals that can help you talk about your feelings, talk to your partner about your diagnosis, safe sex and dealing with learning about your diagnosis during pregnancy. Many women find out about their HIV status through prenatal testing. You are not alone.
Many women are eligible to see a case manager or social worker. They can help make sure that your basic needs (food, housing, transportation) are met in addition to helping to link you to support groups or other services that you may need.
You should always feel comfortable talking with your health care provider and case manager, if you have one. Project Inform is a great resource with fact sheets on pregnancy and HIV. AIDSinfo also has excellent resources. Other great websites containing resources, news and support include www.TheBody.com and www.thewellproject.org.