ABSTRACT
Background: The Cystic Fibrosis Legal Information Hotline (CFLIH) provides information on legal issues affecting people with cystic fibrosis (CF). Since 1998, it has provided the CF community with confidential information on health insurance, Social Security, employment, and education. Method(s): The CFLIH tracks each call according to the age of the person with CF, the caller's relationship to the person with CF, and the subject matter of the call. Result(s): The CFLIH received 10 870 calls in 2021;63% were related to a person with CF aged 18 and older and 37% to a child younger than 18;55% were from a person with CF, 7% more than in 2020;and 22% of calls came from CF centers. Of the 2444 calls from CF centers, 95% were from nonphysician staff and 5% from physicians. Twenty-two percent were from a parent of a person with CF, and 1% of callers were the spouse or someone with another relationship to the person with CF. Fifty-seven percent of calls were related to Social Security benefits, 9% more than in 2020. These calls were evenly divided between Supplemental Security Income and Social Security Disability Insurance. Sixteen percent of calls were related to benefits and coverage under a private or public health benefit plan: 34% of these related to private health benefit plans and 66% related to public health benefit plans. Of the public benefit plans, 53% related to Medicare and 47% to Medicaid. Nine percent of calls were related to CF in primary, secondary, and higher education, 22% more than in 2020, and 18% were related to employment. Conclusion(s): Total calls in 2021 stabilized after a record high of 13 405 in 2020. The surge in calls that began in 2020 was driven by problems caused by the COVID-19 pandemic and continued into 2021. Calls in 2021 exceeded pre-pandemic levels. In 2021, calls related to Social Security were 9% higher than in 2020. The increase in Social Security calls is attributed to persons with CF becoming unable to work because of the progression of CF symptoms, many of whom are not eligible for CF transmembrane conductance regulator (CFTR) modulator therapy. Calls also increased from those whose health had improved with CFTR modulator therapy who sought information about maintaining Social Security or health insurance while returning to work. The increase in Social Security calls is also attributed to an increase in the number of Social Security beneficiaries undergoing reviews of their disability status by the Social Security Administration. Employment calls continued to be higher than pre-pandemic levels. Remote work during the pandemic tended to help workers with CF maintain employment. Return to in-person work raised concerns about workplace safety, reasonable accommodations, and other workplace issues. Loss of employment with reasonable accommodations for CF was a common experience. The CFLIH increased health equity by helping maintain health coverage for vulnerable members of the CF community, which avoids disruptions in coverage and care. During the global COVID-19 pandemic, the CFLIH continues to be a reliable source of information in obtaining Social Security benefits, health insurance, employment, and safe access to educationCopyright © 2022, European Cystic Fibrosis Society. All rights reserved
ABSTRACT
Method: The CF Legal Information Hotline® (CFLIH) provides information on legal matters affecting people with CF. Because of its call volume, national scope, and focus on CF, it observes emerging trends. After FDA approval of elexacaftor/tezacaftor/ivacaftor (EIT), CFLIH tracked calls from individuals who are not working due to CF, receiving Social Security benefits, and inquired about undertaking work because of improved health after taking EIT. The Social Security definition of “Work” is substantial gainful activity of 20 or more hours per week earning $1,260 per month or more. Results: In Oct 2019, 3% of all CFLIH callers (22/783) inquired about attempting work after improved health on EIT. Nov19 5% (37/802);Dec19 8% (69/829);Jan20 18% (119/671);Feb20 20% (126/638);Mar20 4% (72/1618);Apr20 2% (27/1624);May20 2% (34/1642);Jun20 4% (54/1219). The reduction in inquiries about work beginning in Mar20 coincided with the US outbreak of COVID-19. Discussion: Continued Access: Callers were primarily concerned with maintaining health benefits and access to EIT if they attempted work. Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) provide health benefits, either Medicaid and Medicare. Undertaking full-time work may result in the loss of these health benefits. Whether Medicare or Medicaid could be continued or replaced with affordable coverage was addressed by CFLIH. Trial Work Period: SSDI beneficiaries may have up to a 9-month trial work period without losing benefits. Beneficiaries may continue benefits if the work attempt is unsuccessful. Yet, Social Security may conclude the beneficiary is capable of work based on a trial work period and stop benefits before the 9-month trial is completed, making a work attempt risky. Sustainability: All callers reported improvement in health while they were not working and had time to adhere to a treatment regimen and maintain their health. However, callers were concerned that health improvements may not be sustained with a transition to, and demands of, full-time work. CFLIH encouraged callers to discuss work sustainability with their CF care center. Irreversibility: Callers were concerned about being unable to return to Social Security or health insurance benefits if full-time work was not sustainable. Some benefits, particularly private health care benefits, once lost may be impossible to reinstate. Young adults incapable of self-support remaining on a parent's health plan after age 26 as a disabled child, eg, cannot regain that coverage once it is ended after a full-time work attempt. Lloss of SSI includes loss of Medicaid, and in states without expanded Medicaid for adults an adult with CF has no access to Medicaid without SSI eligibility. Job Instability: Disability benefits provide economic and health security to adults with CF. Moving from disability benefits to labor market participation may create economic and health insecurity. The current instability in the labor market due to COVID-19 heightens these concerns. Conclusion: As the number of individuals using EIT increased, the number of individuals considering a work attempt increased. Maintaining health benefits and access to CF therapies, sustaining health improvements, and preserving economic security during and after a work attempt remain high priorities.