Volume 15 January 2020
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December PTF Meeting: Contraception 
On January 10th, 2020, Drs. Emily Godfrey and Jackie Yeh discussed contraception options for women with CF and dispelled contraception myths. When Emily worked for the CDC, she realized research assessing contraception in CF was lacking. Therefore, she has spent the past three years working with CFReSHC to help women with CF answer the questions important to them, such as: Does malabsorption affect my birth control pill? Do IV medications lessen the effectiveness of my birth control pill? Emily pointed out that CF clinics tend to focus on the lungs and not reproductive choices, so she is excited that CFReSHC is making an impact in the CF community. During the presentation, Emily and Jackie stressed the importance of birth control for women with CF and planning pregnancies to ensure optimal outcomes. They also discussed the different types of birth control options available. The pair suggested "Bedsider" as a resource as it details available types of contraception. Interestingly, studies indicate that most antibiotics do not decrease hormone levels in women using oral contraception; the exception being rifampin. Both Emily and Jackie stressed the importance of talking about your reproductive goals with your CF care team. While your provider may not instigate the conversation, it is an important one to have. 

The Contraception team discussed their material for the resource guide. First and foremost, women with CF are not infertile. In fact, pregnancy rates increased for some women with CF while taking kalydeco. Studies indicate that 70% of women with CF want to become pregnant.  

The best time to talk to your provider about contraception is when:
  • becoming sexually active
  • starting a study or modulator
  • starting your transplant journey
  • you are ready to become pregnant
  • you are returning to contraception after pregnancy
Click HERE to watch Emily and Jackie's presentation.
Governance Board Updates
CFReSHC Governance Board members meet monthly. Clinicians, researchers and patient partners collaborate with the goal of promoting women's health research to reduce knowledge gaps and to improve standards of care. Every member of the team believes in 100% integrity, professionalism and transparency.
CFReSHC Philosophy and Framework:
  1. CFReSHC is guided by agreed upon principles with the ultimate goal of improving the reproductive and sexual health of those with CF in the United States and Canada.
  2. Collaborators work to achieve all of their goals in a manner that upholds the privacy and dignity of those within the CF community and within a culture of inclusivity and respect for all individuals.
  3. CFReSHC engagement includes bi-directional exchanges of ideas and information through equal research partnerships and mutual respect between all stakeholders (the CF community, organizations, clinicians and researchers).
  4. As part of maintaining equality, the Collaborative has agreed not to use titles when interacting with one another.
  5. CFReSHC interactions demonstrate mutual respect and respect of privacy of all individuals.
  6. CFReSHC is committed to a culture of evidence and the scientific method.
  7. All discoveries and best-practices will be developed utilizing patient-engaged research.
Understanding Vaginal Health
Our vaginal health is important though it is rarely discussed. It is taboo. I mean, there is the embarrassment of talking about our private part, uncertainty over terminology and, even, fear of what symptoms mean. We often think about the image on the left--clinical. However, our vaginal health is important because we are sexual beings who happen to have CF.  We need to think of our vaginal health as part of the pretty picture that is unique to us, like the image on the right. 

When there is a discharge, odor or another symptom, your mind immediately thinks the worst--I have a sexually transmitted Infection (STI) and my life is over. Maybe that seems dramatic, but there is a very negative stigma associated with STI's (telling future partners and providers and noting it on medical forms) despite the fact that they are rather common in society. For example, the CDC finds that 11% of the US population has the herpes virus! In fact, 2017 marked the fourth year in a row that STI's increased significantly according to the CDC. Perhaps, STI's increase because people are not talking about it. 

So we are going to talk about it with Dr. Diane Harper from the Univ. of Michigan on Feb. 12, 2020 from 3-5 p.m. EST. Dr. Harper's discussion promises to be an educational experience because she has worked to bring about vaccinations and guidelines that help our in vaginal health care. Her presentation will be recorded in case you cannot attend.
Women with CF: Join our next meeting
On Feb. 12, 2020, Dr. Diane Harper, (Univ. of Michigan) will discuss "Vaginal Health." Diane is internationally recognized for her work in advocating for the prevention, diagnosis and treatment of the human papillomavirus or HPV--the most common sexually transmitted infection in the United States.  Interestingly, she was involved in the development of the HPV vaccine and in the writing of the guidelines for its use.  In addition, she has helped write guidelines on the interpretation of pap smears--the standard test looking for cancer signs in cervical cells.  After her 20 minute presentation, attendees will have the opportunity to ask questions. Please share with your friends!  Email: for login details.
Upcoming CFReSHC PTF Meetings

CFReSHC Newsletter!

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Cystic Fibrosis Reproductive and Sexual Health Collaborative · 1959 NE Pacific St · Box 356460 · Seattle, Washington 98195 · USA

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