women with cystic fibrosis

Topic: Pregnancy for women with cystic fibrosis

The $9 million trial, titled “The Maternal and Fetal Outcomes in the Era of Modulators (Mayflowers) Study,” is being funded by the Cystic Fibrosis Foundation (CFF).

“The first documented case of a woman who had cystic fibrosis and became pregnant was in the 1960s. But she passed away less than 2 months after the birth of her child,” said co-principal investigator Jennifer L. Taylor-Cousar, MD, MSCS, a pulmonologist at National Jewish Health in Denver, Colorado.

Taylor-Cousar noted that today more than 50% of women with cystic fibrosis are aged 18 or older. “We have new medications that we hope will help people live closer to full life expectancy,” she said.

In addition, every year the number of women with cystic fibrosis who become pregnant is increasing, according to registry data, from 310 women in 2019 to over 600 in 2020.

The Mayflowers study, which will begin in July and end in December 2025, will enroll 285 women with cystic fibrosis at 40 sites across the United States. The women will be followed through pregnancy and 2 years after giving birth to document their health changes.

The study team expects that about 25% of the women will stop taking their cystic fibrosis transmembrane conductance regulator (CFTR) modulator during part or all of their pregnancy. “CFTR modulators are a new class of drugs that impacts the basic defect in cystic fibrosis and has been shown to have profound effects on lung function, weight and quality of life,” Taylor-Cousar told Contemporary OB/GYN®.

Although many new moms experience exhaustion or lose weight, these issues are compounded for those with cystic fibrosis, “who need to complete hours of therapies to maintain health, and have the baseline challenge to maintain one’s weight because of the lack of pancreatic enzymes with which most people with cystic fibrosis are born,” Taylor-Cousar said.

There is no published data in human women whether all 3 components of the newest CFTR modulator are transferred to the baby through the placenta or breast milk, according to Taylor-Cousar. “Furthermore, only small retrospective surveys have reported use of CFTR modulators in pregnancy, limiting our understanding of the impact of modulators on outcomes for infants exposed in utero and during lactation,” she said.

Topic Discussed: Pregnancy for women with cystic fibrosis

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