On January 3, Dr. Jennifer Taylor-Cousar discussed her research focusing on the use of modulators during pregnancy. Fertility in women with CF is impacted by thick cervical mucus, delayed puberty and ovulation and sub optimal nutritional status. CF Pregnancy complications include: diabetes, pulmonary exacerbation, medication side effects and preterm labor. Yet, the desire for women with CF to get pregnant is increasing and the pregnancy rates for women with CF is increasing.
Modulators are having an impact. Some women on Orkambi experience changes in their menstrual cycles. Some women on Kalydeco experienced problems finding approved contraception methods. Some women who started modulators found it easier to conceive.
Pregnancy outcomes for women with CF on modulators and their infants are being conducted. However, no human trails have been conducted to evaluate the effects of modulators on infants during pregnancy or during breastfeeding. Therefore, prospective studies in pregnant women with CF are needed.
Dr Taylor-Cousar did acknowledge problems women faced when they opted to stop modulators. Stopping modulators seemed to find patients experiencing health declines below baseline.
During the break out sessions, women on modulators offered some physical changes they have noticed such as: easier pelvic exams with thinner cervical mucus, one modulator did not make it easier for them to get pregnant and more regular menstruation cycles. Women also wondered about the long term side effects of taking modulators.
Women who voted on the post PTF poll selected these three research areas:
- What is the toxicity of modulators on pregnancy? Breastfed infants? It is safe?
- How do modulators affect female sex hormones levels?
- How do modulators influence menstrual cycles? Affect menopause?
The next PTF meeting titled, "Vaginal Health and CF" will be held Saturday February 23, 2019 from 3-5 EST. Dr. Susie Baldwin, a CF patient, transplant recipient and cancer survivor, works as a Public Health and Preventive Medicine physician. Her career has focused on sexual and reproductive health and women’s health. She will discuss topics faced by women with CF such as STIs, vaginal infections and cervical mucus from her personal and professional experience.