#NACFC2016 – Lack of Research in Birth Control in CF Leaves Women with Little Support for Reproductive Choices

There is not enough data to assess the effectiveness of birth control options in women with cystic fibrosis (CF), in whom an unplanned pregnancy may carry substantial risks for both the mom and the fetus.

A session titled “Interesting Challenges in Women’s Health in Cystic Fibrosis,” discussed these topics in two presentations at the 30th Annual North American Cystic Fibrosis Conference (NACFC) Oct. 27-29 in Orlando, Florida.

In their talk, “Complexities of Hormone Contraception in the Era of More Complex CF Medications,” Joanne Billings, MD, MPH, of the University of Minnesota, and Kim Ehlert, PharmD, from Fairview Pharmacy Services, said that as cystic fibrosis treatments improve, more women with the disease are reaching reproductive age.

The choice of contraceptives should take into account factors that contribute to the safety and effectiveness of the contraceptive. While most women with cystic fibrosis use oral contraceptives, it’s possible this is not the best choice.

Many medications boost the activity of liver enzymes that process hormones used in oral contraceptives. If those medications are used together with birth control pills, the concentration of hormones in the blood becomes too low, and there is a possibility women can get pregnant despite using oral contraceptives.

In cystic fibrosis, lumacaftor, included in the combination drug Orkambi, is a strong trigger of these liver enzymes. Women using the drug should not rely on oral contraceptives for birth control. No studies have been performed exploring if and how Orkambi impacts the use of non-oral contraceptives though.

Also, although most antibiotics (with the exception of rifampin) have no effect on contraception in healthy women, patients with cystic fibrosis are often exposed to high levels of antibiotics and may have a decreased uptake of contraceptive hormones from the gut because of their illness. So far, however, there are no studies that have explored these issues in CF patients.

There are also no official guidelines for contraceptive use in women with cystic fibrosis, leaving physicians to take into account disease-specific factors, such as diabetes and bone health, when selecting suitable birth control options.

Additional studies should investigate proper birth control choices in women with cystic fibrosis.

While Billings and Ehlert focused on contraception, Sarah Traxler, MD, from Planned Parenthood of Minnesota, North Dakota, South Dakota, took a closer look at pregnancies in women with CF in her talk “Update on Gynecologic Health for the Female with Cystic Fibrosis.”

Traxler pointed out that even though researchers used to believe that women with CF were infertile, it has become apparent that many women can get pregnant. The majority of women with CF have normal menstrual cycles, and 50 to 75 percent of those attempting to get pregnant successfully conceive.

However, studies show that women with cystic fibrosis prefer to plan their pregnancies well, and that untimely or unintended pregnancies often make them consider an abortion. Despite this, a quarter of all CF pregnancies are unplanned.

This can be particularly devastating for a woman with CF, as studies have shown that pregnancy — particularly when a woman has more health issues — can cause increased hospitalizations, a chronic lack of oxygen, fetal growth restriction, preterm delivery, diabetes, heart problems, and even death.

According to Traxler, it is therefore crucial for a woman with cystic fibrosis to be in good health when she becomes pregnant.