Reproductive Health Should Be Discussed Routinely in Cystic Fibrosis, recommends CF Foundation
A Cystic Fibrosis Foundation position paper recommends that reproductive health be addressed at the time of cystic fibrosis diagnosis and revisited annually, particularly as cystic fibrosis transmembrane conductance regulator (CFTR) therapies have significantly improved survival and pulmonary health. Most people with cystic fibrosis are now living into and beyond their reproductive years, making issues such as contraception, pregnancy, and eventually menopause increasingly important. Cystic fibrosis transmembrane conductance regulator (CFTR) modulators and most other cystic fibrosis treatments generally do not prevent contraception or pregnancy, highlighting the need for proactive, individualized reproductive counseling.
The study was published in The Lancet Respiratory Medicine by Prof. Raksha Jain and colleagues. In order to provide guidelines which can be applied in practice, the Cystic Fibrosis Foundation established a wide committee of clinical experts which included adult and pediatric pulmonologists, obstetricians, reproductive endocrinologists, genetic counselors, and clinical pharmacists.
Dedicated working groups performed a systematic review of peer-reviewed literature in five key domains: reproductive health service delivery in general; the safety and use of contraception; fertility issues in females and males; pre-conception and high-risk pregnancies; and effects of exposure to CFTR modulator during pregnancy and lactation. Based on available epidemiological data and clinical trial results, guidelines were formulated.
Key findings:
• There is need for uniformity of reproductive health education among all care centers and should start right from the point where the diagnosis of cystic fibrosis is made and should be done yearly throughout their lifetime.
• The contraceptives used by people living with CF are quite safe and effective, but use is far much lower than that in the rest of the general population and this is a key area for counseling.
• The fertility status for women using CFTR modulators has significantly improved whereas males still face anatomical obstruction that needs reproductive technology for conception.
• There is need for close monitoring of pregnant mothers in order to ensure proper fetal development and this includes specific protocols of diagnosis and screening in case of any pancreatic complications like cystic fibrosis related diabetes.
Therefore, it is necessary to establish a set standard for reproductive health care provision, where education is provided from the time of diagnosis of cystic fibrosis, and on an annual basis. As treatments advance and prolong lifespans, it is imperative that reproductive counseling be integrated into standard care for the optimal health of individuals and families.
Reference:
Jain, R., Taylor, J. L., Kazmerski, T. M., Lonabaugh, K., Trimble, A., Velez Leitner, D., Foil, K., Hong, G., Johns, W. B., Kolarova, T., Meier, E., Perry, A., Singh, K. E., Stahl, C., Szentpetery, S., Weiss, M. S., West, N. E., Wilson, A., Wright, B., … Roe, A. H. (2026). Reproductive health guidance for the cystic fibrosis community: a Cystic Fibrosis Foundation Position Paper. The Lancet Respiratory Medicine. https://doi.org/10.1016/s2213-2600(26)00120-7
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