Apply for the chance of a $10,000 scholarship!

The Sacks for CF Scholarship is related to quarterback sacks made during the NFL season. The undergraduate and graduate award is made annually to 30 people who strive for therapy adherence and academic success.

Continue reading Apply for the chance of a $10,000 scholarship!

Study Links PPI Use to Treat Gastroesophageal Reflux with More Frequent Hospitalizations

Doctors should frequently re-evaluate the use of protein pump inhibitors (PPIs) for cystic fibrosis (CF) patients, urges a University of Florida study which warns that long-term PPI use leads to a higher risk of hospitalization for pulmonary exacerbations.

Identifying risk factors associated with pulmonary exacerbations is critical since they cause a decline in pulmonary function and survival rates among CF patients.

PPI use, in particular, is believed to cause community-acquired pneumonia (CAP). Even though most CF patients use PPIs to control gastroesophageal reflux (GER), scientists still don’t fully understand the link between PPIs and pulmonary exacerbations in CF.

In the study, “Proton Pump Inhibitor Use Is Associated With an Increased Frequency of Hospitalization in Patients With Cystic Fibrosis,” which appeared in the journal Gastroenterology Research, researchers investigated that link and the risks it entails.

The study involved 114 adults who had been seen at UF’s Adult Cystic Fibrosis Center in Gainesville, Florida, between January and December 2016. Researchers collected data on PPI use and hospitalization during a one-year follow-up.

Results showed that 59 of the 114 patients (51.7 percent) used PPI for six or more months, and that exactly the same proportion (51.7 percent) had been hospitalized at least once during the one-year follow-up period. Among those who were hospitalized, PPI use was closely linked with the number of hospitalizations for pulmonary exacerbation, though researchers observed no link between frequency of hospitalization and PPI dosage.

No significant difference was found in GER between hospitalized and non-hospitalized patients.

The UF study is limited, in that it’s retrospective and therefore doesn’t establish a cause-effect relationship between PPIs and pulmonary exacerbation. Researchers say there’s still a possibility that GER itself — rather than the subsequent use of PPIs — causes increased pulmonary exacerbations. Yet they point out that the prevalence of GER was similar among hospitalized and non-hospitalized patients, supporting a causative link between PPI and pulmonary exacerbations.

Based on their findings, the UF team suggests that “prescribers of PPI therapy should exercise pharmacovigilance; frequently re-evaluating indications and appropriateness of therapy and in the setting of GER considering alternate management modalities such as anti-reflux surgery where appropriate.”

For original article please visit: https://cysticfibrosisnewstoday.com/2017/12/07/proton-pump-inhibitor-use-is-associated-with-an-increased-frequency-of-hospitalization-in-patients-with-cystic-fibrosis/

Deadline to Enroll in a 2018 Marketplace Plan Ends Friday December 15th!!

The deadline to enroll in a 2018 Marketplace health insurance plan is Friday, December 15, 2017.  A person can visit www.HealthCare.gov to create an account and review options for coverage.  Then the person can apply for coverage for  2018.  All plans on the government Marketplace offer essential benefits, such as emergency room visits and prescription drug coverage, as well as preventive care including shots and screenings.  The plans offered are run by private insurance companies.  Many states have a variety of plans available.
Some people in the CF community think that the Affordable Care Act has been repealed.  This NOT true.  The Affordable Care Act is still the law of the land.
This means that some people with CF may be eligible for premium help when purchasing a policy on the Marketplace.  The household income cut off is much higher than the cut off for Medicaid which means many people with CF may be eligible for help paying their premiums if their plan is purchased through the Marketplace.
 Some states run their own Marketplaces.  When a person goes to www.Healthcare.gov the site will link them to their state marketplace if the state has their own marketplace.
In some cases the premium help that is available is higher than the help that has been available in prior years.
The only way to enroll in a health plan through the Marketplace after December 15, 2017 is if you qualify for a Special Enrollment Period.  A person qualifies for a Special Enrollment Period if the person has certain life events occur such as losing health coverage, moving, having a change in income, getting married or having a change in family size.
If a person with CF is without health insurance coverage or wants to see if a better more affordable option is available then he or she should go to www.Healthcare.gov to see what is available before time runs out.

Trial to Possibly Treat Nonesense Mutations Begins

Sevion Therapeutics and Eloxx Pharmaceuticals announced that a first healthy subject has been dosed in a Phase 1b clinical trial assessing the safety, tolerability and drug properties of ELX-02 as a potential treatment of several genetic diseases caused by nonsense mutations, including cystic fibrosis (CF).

Continue reading Trial to Possibly Treat Nonesense Mutations Begins

Only I Can Look Into My Mirror

Guest Blog By: Brennen Reeves

If I were to count all of the scars on my body, the ones visible to a bystander at the beach, I’d need your fingers and toes, plus mine. And someone to mark the tallies. Thirty-eight. I’ve counted. From my chest, to my stomach, up to my neck, and down to my ankles the grooves are endless it seems. I don’t think I have any on my back but then again I cannot see my back and I still have trouble with sensation from the bilateral lung transplant I received in 2011, so I wouldn’t be able to feel them either. Continue reading Only I Can Look Into My Mirror

Cystic Fibrosis Wind Sprint 65: Exercising Outdoors Post-Transplant

As all post-transplant patients know, exercising outdoors can be a daunting task because of the danger of too much sun exposure. To solve this issue, Jerry wears lots of sunscreen, a sun-blocking hat, and often works out using a medicine ball somewhere in the shade. Working with a weighted medicine ball gives him the flexibility (literally!) to move his workouts out of direct sunlight and into the shade when necessary, allowing him to enjoy a beautiful day outside while protecting his skin from any harm. As Jerry likes to say… no excuses! Get outside and exercise to live, breathe, and succeed with cystic fibrosis!

Continue reading Cystic Fibrosis Wind Sprint 65: Exercising Outdoors Post-Transplant

Alcohol Usage in CF Population Survey Opportunity

My name is Erin Lowery, and I am an adult Cystic Fibrosis physician and assistant professor at Loyola University Chicago. My research focuses on alcohol use in people with lung disease, and I would like to better understand alcohol use in people with cystic fibrosis. I have been working with the CFF on a research project which involves looking at alcohol use in people with CF and how it impacts their health. As a first step in this project, we have created an anonymous survey. I hope that it gives us some insight into how people with CF are using alcohol and if it affects their health. Continue reading Alcohol Usage in CF Population Survey Opportunity

We want to hear from you! CF Roundtable article submission deadline soon

CF Roundtable Article submissions are due December 15th.

The Focus Topic for the Winter 2018 issue is “Becoming A Parent With CF”.  If you – our adult readers with CF – have thought about becoming a parent, what decisions and considerations did you make? Are you a parent or do you help raise a nephew, niece or another child relative? Whether you already have children or want to start a family, tell us about your journey to parenthood.

Continue reading We want to hear from you! CF Roundtable article submission deadline soon

USACFA Annouced by CF Foundation as a Recipient of 2017 Impact Grant

The Cystic Fibrosis Foundation has announced the recipients of its second annual Impact Grants. The Impact Grants Program provides funding to unique projects by and for people with cystic fibrosis (CF) and their family members. CF is a rare, genetic disease that progressively limits the ability to breathe and ultimately causes premature death.

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A Tribute to Everyone with Cystic Fibrosis

Dear CF Roundtable Blog readers,

I would like to share a drawing that I recently created. Occasionally, in my spare time, between four treatments a day, working, cooking food, attempting exercise, and the intermittent phone call or meet up with friends, I hone my artistic skills. In all honesty, it is maybe every few months, but when I do create something, it brings me much pleasure. Cystic fibrosis, the greatest blessing and the greatest curse in my life, obviously affects me daily yet provides the most inspiration.

Continue reading A Tribute to Everyone with Cystic Fibrosis