What resources are out there for HIV-positive pregnant women (specifically in and around Oklahoma), and how can I contact them?

July 30, 2007 11:13 AM

What resources are out there for HIV-positive pregnant women (specifically in and around Oklahoma), and how can I contact them?

Someone I know recently became HIV-positive and pregnant, more or less simultaneously. She's been given the runaround by a GP who seems to know very little about the particulars of treating her. I'm sure that more specialized resources exist, but I have no idea what they are or how to get in touch with them.

posted by anonymous to health (10 comments total)

Planned Parenthood is a good place to start. There are several PP health centers in OK. There are absolutely more specialized services available, and with correct treatment she could greatly reduce the chances of her child contracting HIV.
posted by kimdog at 11:30 AM on July 30, 2007

In the absence of other responses, you may have some luck asking any local planned parenthood office.
posted by bottlebrushtree at 11:32 AM on July 30, 2007

I cannot recommend the folks at RAINN enough. They are an amazing resource for a very silent minority here in Oklahoma. I am always impressed with their visibility and their outreach efforts where most people would prefer to pretend these types of things are not an issue. I would be hard-pressed to find a more helpful and caring group of folks who also really know their stuff.
I also third the recommendation for Planned Parenthood. The link is for the contact info for PP in central OKC, and it is also the seat of the admin offices for Planned Parenthood of Central Oklahoma. In my experience, they represent a wealth of resources for all women in a state that can sometimes be disappointingly judgmental and unhelpful. Good luck to her, you're a good friend. She has a lot of learning and adjusting to do on both fronts, and you can help with both just by being supportive. Sounds like you are on the right track!
posted by the_royal_we at 11:48 AM on July 30, 2007

...and I am sorry: it is actually "R.A.I.N" for R.egional A.IDS I.nterfaith N.etwork. Not R.A.I.N.N. (Rape Abuse and Incest Nat'l Network) But the link is to the correct resource. So many acronyms!
posted by the_royal_we at 11:55 AM on July 30, 2007

IANAD, but your friend should see an obstetrician ASAP so she can discuss her options. There are many medical issues to consider, like antiretroviral therapy, trying for nautral labour versus getting an elective caesarian section, warnings against breastfeeding. Basically, she needs a full-time obstetrician, with whom she can get continuity of care. The treatment usually revolves around decreasing (but not eliminating) chance of perinatal transmission to the child. If she does choose to undergoe antiretroviral therapy during pregnancy, her risk of passing HIV on to the infant will decrease, according to the American College of Obstetricians and Gynecologists.

It's very sad that the GP is giving her the run-around and has not even given a referral to a good OB. However, since many Ob/gyns do primary care, she doesn't necessarily need a referral. I'm out of state so I don't know the Oki channels to go through.

If the obstetrician does not feel comfortable handling the situation, the superspecialist to see would be a maternal-fetal medicine specialist.
posted by desiderandus at 11:58 AM on July 30, 2007

Easy for you to say, desiderandus - you're in Philly. Oklahoma is not exactly known as a hotbed of subspecialty medicine.

More worrisome is this data. If you take a look at that chart, when 10,500 childbearing women were tested for HIV positivity, 3 came up positive. Although it's ten years old, the trends haven't changed much. What that means is that there are not likely to be any providers in OK with a lot of experience in this area, and public funds are not likely to have been allocated to care for the special needs of this population.

I definitely second the idea of going to RAIN for help. Among other things, your friend needs to discuss the option of prenatal AZT, post-birth AZT for the baby, and certain precautions at and around the time of delivery. Your friend also needs to make sure that she has an OB in place who is not afraid to do a delivery or a C-section on an HIV+ woman, and that the facility where she'll be delivering is equipped to deal with these possibilities without dropping the ball.

With all due respect, the GP is in over his head.
posted by ikkyu2 at 12:16 PM on July 30, 2007

The Oklahoma 2-1-1 network. The 2-1-1 network in most states gathers data on all Health and Human services and agencies - gov't and non-profit - offered in a particular area and disperses that information, and they can be as specific as you need them to be. There are many services that don't get much press that may provide exactly the kind of information you friend may need. To quote, they provide, "Physical and Mental Health Resources - health insurance programs, Medicaid and Medicare, maternal health, Children’s Health Insurance Program, medical information lines, crisis intervention services, support groups, counseling, drug and alcohol intervention and rehabilitation."
posted by barchan at 12:23 PM on July 30, 2007

A friend of mine practices maternal fetal medicine here in Philly and works with HIV positive pregnant women all the time. I see the Society for Maternal Fetal Medicine has a physician locator on their site with a number of doctors listed in the state of Oklahoma.
posted by The Straightener at 1:07 PM on July 30, 2007

Contact the wise women at WORLD. They have a lot of experience working with women with HIV, including pregnant women, and most of the women on staff are positive themselves. AIDS Alliance is based in DC, but could tell you if they have a member agency in the area. The Well Project is another excellent organization for women with HIV, including advice on how to work with your medical provider. The OK AIDS Education & Training Center is responsible for training clinicians in Oklahoma, and will know obstetricians with expertise in HIV.

This is definitely a situation where you want a specialist. The good news is that it's also a situation that is very likely to have a good outcome for your friend's baby. Finding a good, experienced doctor now, even if it means having to drive a ways to see them, will make everything else easier down the road.

I wish you and your friend and her child strength and good health.
posted by gingerbeer at 9:28 PM on July 30, 2007

Double posting to say that this would be a very good place to start. It is federally funded to care for women and children with HIV. It seems to be the same center as the one I linked to above, but this is the program for women.

University of Oklahoma Health Sciences Center -- CHARTS Title IV
711 Stanton L. Young Blvd, Suite 430
Presbyterian Professional Building
Oklahoma City OK 73104

[e-mail]
Contact: Wendy McGuckin MBA MPH, Program Administrator
[phone]

That's the contact info I found, and I hope it's not out of date. That's the right program, even if the staffing has changed. I hope that this is not too far away from where your friend is. I just looked for info for Oklahoma. If you're actually closer to Texas, for example, I can try to find you something there.

In addition to their clinical expertise, they will also be able to connect your friend with other women with HIV, which can help address some of the isolation she may be feeling.
posted by gingerbeer at 9:50 PM on July 30, 2007