(314) CF Legal Information Hotline: A Reliable Resource for the CF Community During the Pandemic and Beyond

Background: The CF Legal Information Hotline (CFLIH) provides information on legal issues affecting people with CF. Since 1998, it has provided the CF community with confidential information on health insurance, Social Security, employment, and education.

Methods: The CFLIH tracks each call by age of the person with CF, the caller’s relationship to the person with CF, and the subject matter of the call.

Results: Total Calls:
The CFLIH received 10,870 calls in 2021.

Age of Subjects:
63% of calls were related to a person with CF age 18 years or older. 37% related to children under age 18.

Types of Callers:
55% of calls were from a person with CF, an increase of 7% compared to 2020.
22% of calls came from CF Centers. Of the 2444 calls from CF Centers, 95% were from non-physician staff and 5% were from physicians.
22% of calls were from a parent of a person with CF.
1% of callers were the spouse or other relationship to the person with CF.

The Subject Matter of Calls:
Social Security: 57% of all calls related to Social Security benefits, an increase of 9% over 2020.
These calls were evenly divided between Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).

Benefits & Coverage: 16% of all calls related to benefits and coverage under either a private or a public health benefit plan.
Among these calls 34% related to private health benefit plans, and 66% related to public health benefit plans. Among the pubic benefit plans, 53% related to Medicare and 47% related to Medicaid.

Education: 9% of all calls related to CF in primary, secondary, and higher education, an increase of 22% from 2020.

Employment: 18% of all calls related to employment.

Conclusions: Total calls in 2021 stabilized after a record high of 13,405 calls in 2020. The surge in calls that began in 2020 was driven by problems caused by the COVID19 pandemic and continued into 2021. Calls in 2021 exceeded pre-pandemic levels.

In 2021, calls related to Social Security increased 9% over 2020. The increase in Social Security calls is attributed to persons with CF becoming unable to work due to the progression of CF symptoms, many of whom are not eligible for CFTR modulator therapy. Calls also increased from those with improved health from 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 current 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. The 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 COVID19 pandemic, the CFLIH continued to be a reliable source of information in obtaining Social Security benefits, health insurance, employment, and safe access to education.

Acknowledgements: The CFLIH gratefully acknowledges funding from the CF Foundation.

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