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Journal of Cystic Fibrosis ; 21(Supplement 2):S209-S210, 2022.
Article in English | EMBASE | ID: covidwho-2318707


Background: As a result of COVID-19-related precautions, states temporarily relaxed certain restrictions on telehealth services during the pandemic, including waiving licensing requirements so physicians could serve patients across state lines, but many states ended this flexibility in 2021. According to two online surveys fielded by the Cystic Fibrosis Foundation (CFF) to accredited centers in 2020 and 2021, 65% of programs reported providing care to patients living in another state. Of these, 18.5% reported that some of their out-of-state (OOS) patients were not able to access telehealth services because of licensure-related issues [1]. CFF Compass fielded 20 calls from people with cystic fibrosis (CF) in 15 states requesting assistance in accessing their OOS care center, accounting for more than 25% of all network adequacy inquiries received during that time. CFF recognized the need for policy change to improve access to OOS care for people with CF. Method(s): In 2021, we interviewed five CF care centers about their experiences with telehealth and OOS licensing. The administrative burden of applying for multiple state medical licenses was a key barrier to providing remote OOS care, and CFF identified the Interstate Medical Licensure Compact (IMLC) as one solution. The IMLC streamlines the licensing application process for physicians who want to practice in multiple states. From January 2021 to March 2022, CFF supported legislation in 10 states to join the IMLC by sending letters with 31 care center director co-signers. CFF also hosted a webinar in June 2021 to educate CF care centers about the IMLC as away to pursue multiple medical licenses with one application. We shared follow-up information about the IMLC through CFF COVID-19 digest emails. CFF sent a survey in March 2022 to all CF care centers to understand current use of and barriers to telehealth for CF care teams. Data from this survey are forthcoming. Result(s): Before CFF's engagement in January 2021, 30 states and the District of Columbia were members of the IMLC. As of April 8, 2022, five additional states have passed legislation to join the IMLC, reflecting a 17% increase in state participation from January 2021 to March 2022. Within the 35 participating states at present,126 CF care center programs will have the potential to use the IMLC. CFF has supported legislation in all six states with pending legislation to join the IMLC in 2022. Increased physician awareness of IMLCwas evidenced by physician participation from 20 states in thewebinar, aswell as broad distribution of the recording via the COVID- 19 digest to 288 CF programs in 49 states afater the session. Conclusion(s): Although more states taking action to join the IMLC is an important step, challenges persist. Even in IMLC member states, CF providers express concerns about the cost and administrative burden of maintaining licenses in multiple states. Permanent regulations regarding use of and reimbursement for telehealth remain uncertain. To better understand current challenges and opportunities for telehealth and remote OOS care, CFF is supporting additional research and advocacy.Copyright © 2022, European Cystic Fibrosis Society. All rights reserved

Journal of Cystic Fibrosis ; 21(Supplement 2):S219-S220, 2022.
Article in English | EMBASE | ID: covidwho-2314559


Background: Planning for college and post-secondary education has historically been a challenge for people with cystic fibrosis PwCF) because of a shortened life expectancy and the high cost of CF treatments. According to the Cystic Fibrosis Foundation Patient Registry, the median age of death was 32 in 2019 for PwCF in the United States [1]. Those who are healthy enough to plan for post-secondary education typically need financial assistance to offset the cost of tuition. This need has led many PwCF to contact Cystic Fibrosis Foundation Compass, a free, personalized case management service that provides information and resource referrals, for assistance with education-related expenses. Over the course of the pandemic, Compass observed a spike in interest of people seeking financial assistance and other resources to explore further education. We sought to better understand the increase in education requests from 2019 to 2021. Method(s): Compass data from January 1, 2019, through December 31, 2021, were reviewed.We reviewed data for all inquiries categorized as education, which include requests for scholarships, financial aid, and vocational rehabilitation. Compass also collects information on caller demographic characteristics such as age, household size, and household income, and this information was reviewed for all education inquiries during the 3-year period. We do not typically ask why callers are requesting financial assistance. Result(s): There was an increase in requests for financial assistance for education in 2020 and 2021: 98 scholarship requests in 2019, 140 in 2020, and 238 in 2021. The average age of PwCF requesting financial assistance with educationwas 24 all 3 years. One PwCF with an income of $100,000 or more requested financial assistance with education in 2019, five in 2020, and 13 in 2021. Conclusion(s): The number of education requests Compass receives has increased every year since 2019. The average age of PwCF making requests was 24, which is considered a non-traditional student by the National Center for Education Statistics [2]. Therewas also an increase in callers with high household incomes requesting financial assistance with education expenses. The approval of elexacaftor/tezacaftor/ivacaftor in 2019 may have contributed to the increase in requests each year, because PwCF eligible for and taking this medication may be experiencing better health outcomes and able to focus on furthering their educations. The COVID-19 pandemic may also have contributed because fewer people were able to work outside the home and may have elected to further their education as a result. Financial hardships due to the pandemic may also explain the increase in requests for financial assistance, even for those with high household incomes. Our results showa continued increase in requests each year. We are interested in identifying and exploring the cause of this increase through survey or conversations with those seeking education assistance through Compass. We will continue to follow the data to see if the increase continues as the COVID-19 pandemic ends.Copyright © 2022, European Cystic Fibrosis Society. All rights reserved

Journal of Cystic Fibrosis ; 20:S157-S157, 2021.
Article in English | Academic Search Complete | ID: covidwho-1454676
Journal of Cystic Fibrosis ; 20:S160-S161, 2021.
Article in English | Academic Search Complete | ID: covidwho-1452448
Journal of Cystic Fibrosis ; 20:S93, 2021.
Article in English | EMBASE | ID: covidwho-1361566


Introduction: The rate of food insecurity (FI) among Americans is 10.5%. A recent U.S. study found 33% of people with cystic fibrosis (PwCF) experience FI. We sought to understand the needs for those seeking assistance with food through Compass and how these needs changed due to COVID-19. CF Foundation Compass is a free, personalised case management service to help with insurance, financial, legal, and other issues PwCF are facing. Methods: We identified Compass calls between January 1, 2019 to December 31, 2020 related to food assistance. We reviewed whether callers had an additional need reported during the call. For 2020 calls, we also determined whether their needs could be met by community resources;2019 referral data was not available. Results: Compass received 174 requests for food assistance. Food requests almost tripled between 2019 (47) and 2020 (127). Of the 174 food requests, 60% of callers had an additional need and 38% had 2 or more additional needs. 75% of the additional needs related to other social factors including utility costs (33%), housing (27%), medical needs (13%), and car issues (5%). In 2020, half of food needs (44%) were not met by community resources. 17% of callers did not follow Compass recommendations. Conclusions: Given the unique caloric needs of PwCF, lack of food is a concern. Food access in the U.S. has been impacted by COVID-19 and community resources are scarce. People facing FI are more likely to have other social needs, such as affordable housing. CF clinicians are uniquely positioned to have sensitive conversations and address these factors to understand the need and improve quality of life for their patients. This can be accomplished by screening for social factors and collecting and evaluating the data. The CF Foundation has enhanced Compass training for responding to food inquiries and put together a Food Security Committee of clinicians and community members focused on research, education, quality improvement, and advocacy.

Pediatric Pulmonology ; 55:S356-S356, 2020.
Article in English | Web of Science | ID: covidwho-882085