She had just arrived at Woman's Hospital in Baton Rouge and was already in labor. As I did my screening, she told me her boyfriend was HIV positive, but she had not had an HIV test, received any prenatal care, nor taken any HIV meds to prevent transmission of the virus to her baby. "Why not?" I asked. "He told me that I couldn't get it from sex -- only if we shared utensils."
Unfortunately, her story is not uncommon. Many people in the South don't see pregnancy as something that needs medical care. They're very untrusting of health care in general, are often uninsured, and only enter the health care system when absolutely necessary.
Her baby was born with HIV.
The "Mississippi Baby"
You've probably heard about the first baby born with HIV who has been "functionally cured". The child began HIV treatment 30 hours after birth. A series of tests showed diminishing virus in the infant's blood, until it reached undetectable levels 29 days later. The infant remained on the meds until 18 months of age, but was then lost to follow-up for a while and stopped treatment. Upon returning to care ten months after treatment stopped, the child underwent repeated HIV tests, none of which detected virus. The child continues to do well and remains free of infection 18 months after all treatment ceased, according to the October 23 New England Journal of Medicine.
I'm sure some of you thought, "Why are babies still being born with HIV in this day and age? We have all this research, there are national guidelines, medications, services, etc. This can't still be happening." But the reality is that it is still happening. The CDC estimates that over 800 newborns were infected with HIV from 2007 through 2011. Why? There's an endless laundry list of reasons why this problem persists, despite our best efforts.
The CDC says that HIV testing should be routine for all pregnant women, and that medication to prevent transmission should be started as soon as possible. With early testing and treatment, we can lower the chance of an HIV-positive pregnant woman passing the virus to the infant to about 1%.
But the challenges affecting women and newborns here in Louisiana and the South in general are staggering: Louisiana ranks third in the nation for HIV cases -- 30 per 100,000. In 2011, over 1,280 people were diagnosed with HIV in Louisiana, a 14% increase from 2010. It has one of the highest numbers of children living in poverty -- 29% in households with an income below the federal poverty level, compared to the national estimate of 23% of all U.S. children.
In United Health Foundation's America's Health 2011 Rankings Report, Louisiana ranked 50th out of the 50 states in overall health. This is mainly due to low high school graduation rates, high infant mortality rates, the large number of children in poverty, and our rate of infectious diseases. In 2011, an estimated 21% of our residents lacked health insurance, compared to a national average of 16%.
Beginning in January 2014, the Affordable Care Act (ACA, or Obamacare) will allow states to expand Medicaid eligibility to most people who make less than $15,856 a year. This should help reduce the spread of HIV, since research shows that HIV treatment not only improves the health of the individual but also reduces the likelihood of transmission the virus by up to 96%. More than 17,000 Louisianans are living with HIV and around 40% are not connected to any treatment. Expanding Medicaid would have a great effect on our state's HIV epidemic. But, unfortunately, Louisiana -- like most states in the South -- does not plan to expand Medicaid at this time.
Each Case Unique
In a perfect world things would be very organized and would go according to plan. All pregnant women would start receiving prenatal care in their first trimester. All OB/GYNs would follow national guidelines, which state that providers should test women for HIV as early as possible during pregnancy and should give a second test during the third trimester.
But we do not live in a perfect world. We live in a world where poverty, stigma, discrimination, drug use, violence, mental illness, and any number of other barriers to care exist. I spoke with Dr. Karen Williams, a pediatric infectious disease physician in Baton Rouge, who treats children and youth with HIV, about why we can't get the numbers of infants born with HIV lower.
"Every story is different," she said, "but when an infant is infected with HIV today, it is usually because the mom did not receive prenatal care or had inadequate care during her pregnancy. This can be due to mental illness (including depression), substance abuse, chaotic living arrangements, and stigma.
"Sometimes a mother is not diagnosed with HIV until after she delivers. We recently had an infant whose mother had a negative HIV test early in her pregnancy. But the baby had poor weight gain after birth, so an HIV test was done on the infant at four months of age. It came back positive, and a repeat test on the mom was also positive. This underscores the need to test women for HIV early in pregnancy and again in the third trimester, especially in areas with high HIV rates. The best chance to prevent HIV transmission is during pregnancy, rather than at the time of delivery."
This is just one example of why infants are still being born with HIV. Statistics bear out the harsh reality for women in Louisiana. People living in poverty do not have adequate access to health education, preventive services, and treatment -- all of which increase their risk of HIV.
Adolescents from poor families tend to drop out of school early, which in turn lessens their access to well-paid, stable employment. That can lower their sense of self-worth and draw them into activities like drug use that put them at risk for HIV.
Poverty can also force people, particularly women, to use sex as a form of payment or as a way to earn money. A study by the National Campaign to Prevent Teen Pregnancy found that a significant number of young black women engage in "transactional sex" -- relationships with older men to secure gifts, money, or financial security. Often a woman in such a relationship is not in a position to dictate condom use, making it more likely she could get HIV and pass it on to her baby.
Louisiana's crime rate is 5% lower than the national average rate but our incarceration rate is an incredible 2015 times higher than the national average. We rank #1 in the nation, with 867 per 100,000 adults incarcerated, the overwhelming majority young men of color. The National HIV/ AIDS Strategy stresses that the gender imbalance in communities with high rates of incarceration results in an "increased likelihood that the remaining men will have multiple relationships with female sex partners" and therefore an increased risk that a single man will transmit HIV to multiple women. Women, especially those who are poor or have little education, can feel dependent on men, leading them to tolerate their partners having sex with other women.
Similarly, women whose regular partners are incarcerated are more likely to have other sexual partners. Risk factors like drug use and sex with an infected partner are increased if a person lives in an area where those risks are concentrated. According to the CDC, this situation, referred to as "residential segregation", partly explains the disproportionately high level of STDs among African Americans.
Late entry into prenatal care is also a problem, along with our high teen pregnancy rate. Add to this the large number of uninsured people in our state, a sizable undocumented population, and high rates of drug use, domestic violence, mental health problems, etc., and you have a "perfect storm" that can increase the likelihood of a mother transmitting her infection to her child. Finally, limited or no access to transportation is a real problem -- if you can't get to the clinic, you're not going to get any prenatal care.
Another woman came to Woman's Hospital knowing that she had been exposed by her partner, who she knew was HIV positive. She was clearly aware that she was at risk, since she had been getting tested for HIV every three months since 2005. We can endlessly wish or expect that people will use condoms consistently, but that's unrealistic. The high rates of unplanned pregnancies we see are evidence enough that people are not always in perfect control of their sexual behavior in the face of love, lust, or even pressure. This woman was stressed and sad about her diagnosis, and had already begun to read up on it, but neither she nor her partner had been in care for several years, largely due to stigma. This is a textbook case where PrEP (see "Drugs, Fear and Loathing: Why Are So Few Getting HIV Prevention Drugs?" in this issue) could have helped this mom-to-be avoid becoming HIV positive.
In Baton Rouge, we see the many obstacles pregnant women must face when it comes to HIV. Stigma, whether real or imagined, is alive and well in the South. It can have serious consequences, including poor interpersonal relations, stress from hiding a positive diagnosis, anxiety, depression, guilt, loss of support, isolation, difficulties with family, and emotional or physical violence.
Disclosure is a real problem, and the reasons for failing to disclose vary. Some people are reluctant to say anything to even their closest family members or to come to a clinic where they may be recognized or may know someone. There are very strong feelings connected to the whole concept of being told they have HIV.
According to Dr. Williams, "Stigma is a big issue. Many patients worry about coming to a facility where they may be recognized as receiving HIV care. The mother of one of our children dropped out of medical care for months because a family member started working in the same building that houses our clinic. She put her own health at risk because of concerns about being seen as having HIV. Other patients have refused transportation, believing that certain taxi services are seen as being for patients with HIV.
"Even among medical providers and institutions there's a reluctance to treat HIV as a chronic illness, and to screen for it as you would for high cholesterol or high blood sugar. In 2006, the CDC recommended routine 'opt-out' HIV testing in health care settings for everyone aged 13-64. Widespread testing, including routine emergency room testing, can have a huge impact in diagnosing patients with HIV, getting them into care, and preventing transmission. So stigma is still a big issue."
For any prenatal care program to be successful, all of these issues must be taken into consideration. These can be very complex cases -- spending 15-30 minutes with a pregnant woman once a month at a prenatal visit is simply not enough. We have found that to be really successful, you need to develop a relationship with them so they trust you enough to be honest about their needs as well as to trust the information you share with them.
We often see adolescent girls who are sexually active but are oblivious to the risks they are taking. There are any number of reasons a pregnant teen would not enter prenatal care: denial that they are pregnant, fear of family finding out, distrust of the health care system, etc. Stigma and ignorance play a huge part in the epidemic in the South by allowing the spread of myths and untruths. The most effective ways to avoid transmission are through proper prenatal care and education.
Woman's Hospital's Mother-to-Child HIV Transmission Prevention Program was started in 2002 to meet our patients where they are individually and to provide an environment in which they feel safe, so that each woman's needs can be met. An HIV diagnosis demands lifelong management, so each patient needs to be linked to local community resources after delivery.
Of course, one of our main goals is to help a mother-to-be have a baby who is HIV negative. This is done with extensive patient education about HIV and the meds she is given. We closely monitor adherence to meds, using self-reports and regular lab tests. The staff also works to help patients with ADAP and drug company Prescription Assistance Programs as needed. We help them to get Ryan White Services, housing, or transportation if needed.
We link each patient to community resources to develop a strong health care network after delivery. HIV is now considered a chronic disease, so it's important that each patient develop a strong relationship with her provider. Our case managers work with local organizations and providers so that each patient has a medical home and case management after delivery. We also provide education and support aimed at removing some of the stigma surrounding this disease, and we work to empower each patient to advocate for themselves and play a pivotal role in their own health care.
Reaching zero in the number of infants born with HIV will require facing down many demons: lack of access to health care, stigma, poverty, ignorance, drug use, poor self-esteem. From 2007 to 2012, there were nine babies born with HIV in the Baton Rouge area. We've made tremendous progress over the years, and I'm proud to report that since the inception of our program, only two women enrolled in our program transmitted HIV to their newborns, and we've had zero transmissions since 2005. But getting everyone enrolled in a program like ours will require tackling the many issues that women, and our country, face every day.
Pamala Ellis is the Clinical Services Coordinator at Woman's Hospital in Baton Rouge, LA.