Volume 18 April 2020
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The (In)Fertility PTF was held on April 14, 2020. Dr. Andrea Roe offered a 20 minute presentation on fertility and infertility for women with CF. According to Andrea, infertility is the inability to conceive after trying to get pregnant for twelve months. This is typically the stage where providers will intervene with initial testing to assess infertility in the couple attempting to conceive. However, within the CF community, women with pancreatic insufficiency and who are over the age of 31 might advance to this stage after actively trying to conceive without birth control for six months. It is important to note that women with CF often suffer from irregular periods, the absence of a period and low hormone levels. Andrea indicated that 1/4 of women with CF use reproductive technologies to achieve pregnancy. These treatments can include:
  • addressing underlying medical health issues like nutrition
  • medication to jump start ovulation
  • intrauterine insemination to bypass cervical mucus
  • in vitro fertilization where embryos without CFTR gene are selected.
Andrea also discussed cervical mucus in women with CF. Researchers know that hydration impacts cervical mucus and that the CFTR protein is expressed in the cervix so, theoretically, thick cervical mucus is linked to the the abnormal CFTR gene. A study in 1973 looked at the cervical mucus in 3 women with CF and 6 women without CF. The women with CF had a smaller quantity of mucus, seemed to have more dehydrated mucus and had no mid-cycle change in mucus water content typical of the non-CF cycle. However, this and other early research studies were small and flawed in their methods. To gather current data, Andrea is initiating a research study of cervical mucus in women with CF. Her study will look at women on modulators, women not on modulators and women without CF. It will have a standardized score for cervical mucus (ie: amount, viscosity). Thus far in her patient population in Philadelphia, women with CF are self-reporting thinning cervical mucus on modulators.  We look forward to the results.

After Andrea's discussion, the chapter team reviewed their research for the resource guide. The team mentioned that 21% of women with CF who have received a lung transplant required help with their pregnancy and that about half of women with CF experience fertility issues. Current research studies will assess if the pregnancy rate in women with CF increases with modulator therapy. The team noted the possible diagnostic tests used to diagnose infertility:
  • HSG is an x-ray to indicate if Fallopian tubes are blocked and to outline that shape of the uterus
  • Semen analysis
  • trans-vaginal ultra sound.
The group indicated that women with CF should be aware that fertility treatments are financially expensive and can be emotionally difficult. 
No information shared in this newsletter is intended to be be used as medical advice and/or treatment. 
Due to schedule changes during the pandemic, Dr. Raksha Jain was not able to join us on April 29, 2020 to discuss hormones in CF. PTF members who attended watched a portion of the presentation Raksha gave in February of 2018 on how hormones impact CF symptoms for women across the lifespan. Both presentations will be available on the CFReSHC website:

The Hormones Team presented information from their section of the upcoming CF Sexual and Reproductive Health resource guide. The team asserted that hormones matter or should matter to women with CF. They advocated that women with CF track their symptoms to see if there is a correlation between CF symptoms (exacerbations/hemoptysis) and hormonal changes during the month.  

Both presentations discussed the gender gap in CF which suggests females have poorer health outcomes. An NIH study in 2014 suggested that gender does affect CF disease progression. Estrogen can impact inflammation, infection and all major determinants in CF lung disease. Moreover, the team noted that estrogen plays a role in virility of pseudomonas. 
Too much or too little of a hormone can be very serious. Hormone fluctuations can cause:  sleep issues, vaginal dryness, brain fog, fatigue, hair loss, mood swings and a drop in libido. Hyper and hypo thyroidism can have adverse affects on reproductive health. It can reduce rates of conception and increase rates of early pregnancy loss. In addition, the female reproductive system is impacted by insulin. Moreover, an abstract from Denmark highlighted that CFRD has increased every decade. 

Even if you did not attend the Hormones PTF, please take a few minutes to answer our poll. We want to hear how hormones impact you: CLICK HERE.
No information shared in this newsletter is intended to be be used as medical advice and/or treatment. 
Hormones Blog
Happy hormones?  I’m not sure….by Linda Bowman

It started at age 11; feeling changes in my body that were unrelated to CF. What were the nuances I felt but could not describe out loud? Ahh, hormones, the beginning of a long road of questions, guessing and riding the waves of uncertainty. After I had my period for a full year, I thought, “Ok I can handle this.” Little did I know things were about to change quickly. Periods that lasted 26 days of the month, heavy clots of blood and severe cramps in middle school and high school were hell.  As a woman in my early twenties, I heard from my CF doc that the reason I have so many breast cysts and ovarian cysts was “because of my CF.” It left me questioning my OB/Gyn who repeatedly told me that I “had severe PMS, unrelated to my CF.” I did enjoy that my breasts were a whole cup size bigger for three weeks out of every month, so should I really complain? But, man, they were painful.

Breast cysts became breast tumors that needed removal. The CA125 test, which screens for ovarian cancer, came back with an extremely high number. My OB/Gyn worried about cancer. I had the tumors removed at age 25; no cancer.  She suggested maybe it had something to do with my CF, but had no definitive answer. A couple of years later, I had another ovarian cyst the size of a grapefruit. The CA125 level came back even higher. They consulted with an oncologist who recommended a C-section type of surgery to remove the cyst in case there was cancer. Thank God, there was none. I asked my CF doc, “Is there a connection with CF to this abnormal high marker reading?”  He did not know. I was left with a C-section scar without the happy result of a baby. That’s a different blog post….

Hormone imbalance seems like a catch 22 to me. As I’m placed on thyroid medication, I wonder, is my CF affecting my hormones? Are my hormones affecting my CF? I’ve been told my issues are hormonal but my CF doc thinks it’s more about my CF. Frustration, anxiety and researching on my own have become second nature, a part of me that I can’t disengage from. 

Having diabetes, PMS that turns into PMDD, cysts and tumors, anxiety run amok and a list too long to write. I have decided to take matters into my own hands.

Exercise, guided meditation, seeing a holistic health practitioner, supplements and seeking out mental health consultation has all played a part in the role of balancing what I don’t have answers for and cannot control. 

I’m not sure my hormones have made me “happy” but they definitely are a part of who I am and fighting them hasn’t helped. Learning to lean in to what I do have control of keeps me in a better place. 
Governance Board Updates
Women with CF often ask what CFReSHC does within the CF community. Our goal is to: 
  • Bring attention to the sexual and reproductive health (SRH) issues faced by women with CF. 
  • Provide a safe space for women to share their CF-SRH stories to improve standards of care.  
  • Engage women in the research process by having them identify CF-SRH research gaps. 
  • Offer women the opportunity to select potential CF-SRH research questions that will be submitted for use in future research studies.
  • Engage women in creating a CF-SRH resource guide for providers and patients. 
  • Enlist CF researchers, providers and other stakeholders to conduct CF-SRH research.
  • Secure funding for CFReSHC work groups to conduct CF-SRH research.
  • Participate in patient engaged research on CF-SRH that benefits the CF community. 
  • Provide training sessions to bring Patient Centered Outcomes Research to the CF community.
  • Provide a Best Practices Guide to the CF community.
As funding for CFReSHC comes to an end in October, Governance Board (GB) members are planning a strategic planning meeting. In addition, the Grants committee is actively reviewing requests for applications (RFA). One option for CFReSHC moving forward is to become a non-profit organization to help expand the opportunities for grant funding.

The GB meetings are also focusing on changes of roles and responsibilities, and on/off boarding members after their time of service. Therefore it is with a heavy heart that we announce that Dr. Emily Godfrey will step down as Chair of CFReSHC. Emily has been with CFReSHC since its inception and we are grateful for the time, energy and expertise she has given to make CFReSHC a success. Emily will continue to offer support to CFReSHC in a different capacity. 
From the Chair of the Governance Board

Dr. Emily Godfrey at the 2019 PCORI Annual Conference. Emily has served on the CFReSHC Governance Board and as Chair since 2016. She has been actively involved in bringing Patient Centered Outcomes Research to the CF community and served as a Principle Investigator on a PCORI Eugene Washing Award from 2018-2020. She has received funding from the CFF to conduct CF-SRH research. 

I have heard it said that sometimes, ‘Life is stranger than fiction.’ It was about eight weeks ago when the deep gravity of the COVID-19 pandemic dawned on me and my husband as we re-watched the 2011 movie “Contagion.” We began to talk seriously about how we might want to prepare ourselves about what lies ahead. As a former CDC researcher from 2010-2012, I also remember when film crews were on site on the CDC campus shooting the movie, Contagion. I may have even joked at the time that such a deadly pandemic would ever happen in our lifetime.  Eight weeks later after re-watching that movie, I am shocked to see how much of the Contagion’s cinematic drama is acting out in real life.  Every day I read the news and feel increasingly saddened by the lives lost from this disease. It's hard to believe how low our national discourse in the United States has become. It has been articulated in the news by NY Governor Andrew Cuomo, who has challenged Americans to ask, I hoped with irony: “how much is human life worth?”  This question comes as anti-quarantine protesters and self-named “freedom fighters” insist on quickly reopening the economy and “just allowing” the pandemic to just run its course. Of course, WE all know that those with underlying lung disease, such as CF, are at greater risk of severe complications from COVID-19 and thus all of us must continue to do what is necessary to protect the lives of those most vulnerable to this virus. I feel disheartened to see some policymakers and hospital administrators generate guidance, based on inaccurate or little information at all about CF, that forces clinicians on the front lines to consider rationing lifesaving care away from those with CF. The lessons I have learned by working alongside our patient partners and CF health care workers and researchers for the last three and a half years reflect how each person’s life is valuable and unique, and that all of our lives are better and richer when we come together to work for a common goal, for example, of improving the lives of those with CF. 

During this time of self-isolation and social distancing, I have been reflecting on what I am grateful for in my life, and my involvement in starting CFReSHC is one of those things. I remember going to my first CF conference ever in 2016 to CFRI. I had just received my first grant from the Patient Centered Outcomes Research Institute (PCORI), which tasked me to bring together CF patients, CF researchers and reproductive health specialists to discuss unmet research needs related to the reproductive and sexual health of women with CF. As a family physician and reproductive health specialist, I had only interacted with and cared for patients with CF on our generalist inpatient-service during their hospital stays at the University of Washington Medical Center. Before working with CFReSHC, I had never really experienced the day-to-day life of people with CF. At the CFRI conference, I had my first glimpse into the passion, drive, and dedication of patients, family members, advocates, clinicians, and researchers working tirelessly to improve the lives of those living with CF.  
As a first-time CFRI attendee, I was welcomed in with open arms, as though I had been a part of the community for years. I was thrilled for a chance to contribute to the CF community, and to learn about the unique lives of those living with CF.  In 2017, together with patients, researchers and clinicians, I formally led the creation of CFReSHC, and drafted the governance document that includes CFReSHC’s mission, vision and organizational structure which defines our Governance Board, Patient Task Force and the Research Advisory Panel. CFReSHC quickly became an 11-member Governance Board, for which I have served as the first Chair. I am proud to say that CFReSHC now has over 200 Patient Task Force members and 16 Research Advisory Panel members.

Since 2017, we have successfully been awarded several grants including a PCORI Eugene Washington Award (PI: Godfrey), that allowed us to develop training materials that help increase patient-centered research methods within the CF community. We are also in the process of generating a resource guide for patient-centered research teams that conduct their work solely online. We also were successful in obtaining the CFF Impact award (PI: Sufian) for two years in a row. Through this grant, we are in the process of completing a sexual and reproductive health (SRH) resource guide for CF clinicians and health care workers. More recently, Dr. Sufian and I successfully obtained funding from the CFF to study changes of CF-related symptoms during a woman’s menstrual cycle. Other CFReSHC members who are pursuing discoveries around reproductive and sexual health in CF, include Dr. Sigrid Ladores who is evaluating fertility preservation in women with CF pre-lung transplantation with funding from the National Institutes of Health (NIH). One of the key aspects of patient-centered outcomes research (PCOR) is the dissemination of our findings from our funded studies. I have been amazed at how active (and successful) we have been at presenting our work at various conferences around the country in true patient-researcher dyad fashion. Important skills in abstract writing, poster generation, and power point presentations have essentially been mastered by a number of CFReSHC members. Since 2017, we have presented 16 separate abstracts, with at least one patient-partner attending each conference. Just in 2019 alone, CFReSHC members presented 9 abstracts at various conferences, including NACFC. 

As calendar year 2020 is almost half over, CFReSHC will be finalizing its third year since its inception in August. Per our governance document, the time has come for me, as the Governance Board Chair to rotate off after three years of service.  I am very proud of the growth and accomplishments of CFReSHC under my leadership. At the same time, I am optimistic about the energy and enthusiasm that new leadership will bring to our organization. While my new role will naturally be less as a front-line face of CFReSHC, my belief in our mission and our shared goals remain unchanged.  And as CFReSHC moves forward I will continue to interact with many of you as we continue to work for the health and well-being of women with CF, their families and the others who care for them.
Thank you to all of you who read our newsletter and continue to participate in and support CFReSHC. I wish you all good health and that you are able to find hope and meaning during these difficult times. 

Sincerely yours, 

Emily M. Godfrey MD MPH FAAFP
CFReSHC Governance Board Co-founder and Chair
Associate Professor of Family Medicine and Obstetrics and Gynecology
University of Washington School of Medicine
Seattle, WA
Pronouns: She/her/hers
Upcoming CFReSHC PTF Meetings
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How are you handling COVID-19?
While the CF Community is used to social distancing, MOST people are not.
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Let us know! 
Telehealth: I think I love you

As a person with CF, I am used to multiple appointments a month. I have been known to have seven in a week. I have actually had three in one day between two cities 60 miles a part. My desk calendar (yes I still have one of those to see a month-at-a-glance) looks like a train wreck. I highlight all of my medical appoints in orange. Why orange? It is my least favorite color. So my job each month is to manage my appointments and to provide this information to my case manager (another monthly appointment). Then, COVID-19 hit. Suddenly with everything canceled, my calendar is full of white space!

I am so glad that my insurance is offering telehealth because it has significantly reduced my stress. While I always seem to be running late and driving like a mad woman to my appointments, now I have the luxury of just sitting in my apartment and turning on my computer.
While I did not get a PFT or sputum culture for my clinic visit, I did get to talk with my provider. I spent 20 minutes instead of about six hours; two of which is just round trip travel. I am confident as the providers and payers recognize the cost effectiveness, more visits will switch to telehealth. I also think that we will have expanded options for testing outside of the hospital setting. I mean, who wants to drive 30 minutes, take time off of work, pay a copay, wait for their provider, only for them to say, "Your blood work looks fine. No changes in your treatment plan." 

So when people ask me how I am coping with shelter in place orders, I say, "I feel like I should be scheduling my life around my medical appointments but I am really enjoying telehealth! and more free time!" - Anonymous with CF

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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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