INTRODUCTION
Cicatricial (scarring) alopecia leads to irreversible hair loss.1 Patients with scarring alopecia experience a high burden of psychosocial disease.1 While scarring alopecia can be difficult to treat, successful treatment can improve well-being.2 However, standard of care therapies are often off-label and not readily covered by insurance.3 As a result, health insurance organizations employ utilization management practices, including step therapy protocols, which require patients to fail treatments that are typically lower cost before receiving coverage for therapies that may be more efficacious.4 Step therapy can lead to delayed treatment response and add to the overall cost of treatment.4 The negative effects of these utilization management policies have been described in those with psoriasis.5 However, they have not been characterized in patients with cicatricial alopecia. We conducted a survey to evaluate patient-reported experiences with step therapy.
In September 2021, a link to an online survey was sent via email to members of the Scarring Alopecia Foundation (SAF). The survey was open to adults with cicatricial alopecia living in the United States. The survey was modified from a previously published study.5
The survey was accessed by 536 individuals and completed by 217. Most respondents were middle aged (60 years old), white (83.9%), females (98.2%), with an annual household income of less than $100,000 (Table 1). The most common forms of cicatricial alopecia were frontal fibrosing alopecia (56.7%) and lichen planopilaris (54.4%). Most participants had private insurance (52.5%). Oral (77.4%) and topical (95.3%) medications were utilized most frequently.
One third (32.3%) of patients reported prior authorization as a barrier to care and 12.9% reported step therapy protocols caused a delay in starting a physician-recommended treatment (Table 2). Nearly one third (30.9%) of respondents experienced an insurance-related treatment delay. Most (60.8%) patients had anxiety regarding the cost of treatment despite insurance and 27.6% reported dealing with financial hardship due to treatment costs. One in three (34.6%) was concerned that utilization management policies prevented them from receiving optimal medical care.
In September 2021, a link to an online survey was sent via email to members of the Scarring Alopecia Foundation (SAF). The survey was open to adults with cicatricial alopecia living in the United States. The survey was modified from a previously published study.5
The survey was accessed by 536 individuals and completed by 217. Most respondents were middle aged (60 years old), white (83.9%), females (98.2%), with an annual household income of less than $100,000 (Table 1). The most common forms of cicatricial alopecia were frontal fibrosing alopecia (56.7%) and lichen planopilaris (54.4%). Most participants had private insurance (52.5%). Oral (77.4%) and topical (95.3%) medications were utilized most frequently.
One third (32.3%) of patients reported prior authorization as a barrier to care and 12.9% reported step therapy protocols caused a delay in starting a physician-recommended treatment (Table 2). Nearly one third (30.9%) of respondents experienced an insurance-related treatment delay. Most (60.8%) patients had anxiety regarding the cost of treatment despite insurance and 27.6% reported dealing with financial hardship due to treatment costs. One in three (34.6%) was concerned that utilization management policies prevented them from receiving optimal medical care.
