Cystic Fibrosis Program

Riley Children’s Health no longer requires masking in public or clinical areas for team members, patients, visitors and families. The Cystic Fibrosis Program will return to prior recommendations: All patients should wear masks when going through the hospital and may remove them once in a clinic room.

The CF Foundation supports the current recommendations made by the CDC. The CDC updated masking guidance, adopting a three-tiered framework — low, medium, and high.

The level is based on the number of new cases per 100,000, the number of new hospital admissions per 100,000, and the percent of staffed inpatient beds occupied by COVID-19 cases, all three metrics based on the previous 7 days. The agency does not recommend masks for those living in communities in the low-level category. Indoor masking (including schools) is recommended for those living in communities in the high-level category.

People who are immunocompromised or at high risk for severe disease should speak with their health care provider about masking in communities at the low or medium-community level.

At all levels, people can wear a mask based on personal preference, informed by their personal level of risk. People with symptoms, a positive test, or exposure to someone with COVID-19 should wear a mask.

Although school systems have removed masking mandates, many children with CF are uncomfortable attending school without a mask because of health concerns. You can also refer to CF and School During COVID-19 for general information and additional downloadable resources.

COVID-19 community levels by county can be found on the CDC website.

Our team is excited about the EUA for COVID-19 vaccination for children 5-11 years of age and we highly recommend vaccination. This is an important step to protecting all children, and especially those with higher risk factors for hospitalization with severe COVID-19 infection. The dose provided is one-third that of the adolescent/adult dose and was shown to be equally as protective with no serious or life-threatening side effects. We encourage you to schedule your child’s vaccination with their PCP if available, by calling 211 or finding a site online.

Our clinic will be offering vaccination and can provide a first or second dose at the time of your scheduled visit, please let the nurse know when you are being roomed if you are interested. Your provider will be able to answer any of your questions or concerns at the time of your clinic visit. We also encourage you to visit the AAP update on COVID-19 vaccination in 5-11 yo age group for additional FAQs.

September 2022

We now have Pfizer bivalent booster vaccines available for our patients aged 12 years and older. If you want your child to receive this please discuss while being roomed as these vaccines can take up to 45 minutes to arrive to clinic. If you have any questions in advance of your visit, please call our clinic or send a portal message.

Holiday Information

Find the latest from the CF Foundation about how you and your family can safely celebrate the holidays this fall and winter.

January 2022

The Riley CF Center has been receiving many calls about children with CF either exposed to, or infected with, COVID-19. Cases of COVID-19 in Indiana are at an all-time high, corresponding to the new, more infectious, omicron variant. In order to keep your child and family safe, healthy, and to avoid missing school and/or work, continue to wear masks in public, obtain vaccines and boosters when eligible, and avoid large crowds or gatherings when possible.

Please see the following most up to date guidelines regarding booster doses of vaccination for children ages 12-15.

You can schedule your child’s vaccination with their Primary Care Provider if available, by calling 211, or finding a site online as directed below. If you want the dose given at their upcoming CF appointment, please contact our clinic in advance through the My IU Health portal or phone call so we can be prepared.

Seasonal influenza vaccines are now available! We highly recommend vaccination for infants and children 6 months and older; there is a high probability for viral co-infections this Fall and Winter. The annual flu vaccine remains safe, and effective at decreasing severe hospitalization in children. We have vaccines available in clinic which can be given at the time of your child’s scheduled visit. Our center is also offering free family flu vaccines for those caregivers and siblings who accompany patients to clinic. If you are interested in a flu vaccine for your child or yourself at time of a clinic visit, please notify staff when you are being roomed. You can also obtain your flu vaccine through primary care physicians, health department and local pharmacies.

A recording of a town hall hosted by the Indiana chapter of the Cystic Fibrosis Foundation addressing important issues such as the COVID-19 vaccine, masks, schools and mental health for children with CF.

Town hall slides also available here.

Returning to School

• Tips from the Cystic Fibrosis Foundation on how to handle being back at school.

Maintaining Emotional Wellness

• A resource on emotional wellness from the Cystic Fibrosis Foundation on how to manage school and daily care routines.

Potential Mental Health and Research Opportunities

• Flyers for research projects to help teens and caregivers dealing with stress or anxiety.
  • COVID-19 Mental Wellness Study
  • CFF ACT Therapy Study
  • Holiday Risk Chart