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Li SJ, Mostaghimi A, Tkachenko E, Huang KP. Association of Out-of-Pocket Health Care Costs and Financial Burden for Patients With Alopecia Areata. JAMA Dermatol. 2019;155(4):493–494. doi:10.1001/jamadermatol.2018.5218
Alopecia areata (AA) is an immune-mediated disease of nonscarring hair loss. Many patients with AA are dissatisfied with current medical treatments and use alternative therapies, wigs, and other cosmetic products.1,2 The accumulation of expenses—including insurance premiums, copayments, deductibles, lost income, transportation, and wigs—may be financially burdensome. In this study, we evaluated disease-related financial burden and out-of-pocket costs for patients with AA.
Between June 1, 2018, and August 31, 2018, we administered a survey based on a questionnaire assessing the self-reported financial burden patients with cancer3 to adults with AA from the National Alopecia Areata Foundation (NAAF) patient database. The survey was emailed to 17 167 members of NAAF, which includes individuals with AA and nonaffected family members worldwide. The survey was also shared on the NAAF Facebook page, where it was viewed 2001 times. The recruitment cover page described the study criteria, which excluded participants who had no history of AA, were under 18, or did not speak English. All surveys were completed online and hosted by Qualtrics. This study was approved by the Partners Human Research Committee, and participant consent was implicit in completion of the survey.
Overall, 675 individuals completed the survey (minimum response rate, 3.5%). Most respondents had active AA (n = 629 [93.2%]), were employed full-time (n = 407 [60.3%]), and had employer-provided insurance (n = 455 [67.4%]); 406 participants (60.1%) reported out-of-pocket spending in at least 4 categories of expenses, with the greatest percentage of participants reporting spending on hair appointments (n = 552 [81.8%]) and vitamins and/or supplements (n = 457 [67.7%]). The median yearly spending was highest for headwear or cosmetic items such as hats, wigs, and/or makeup ($450; interquartile range, $50-$1500) (Table 1).
Most participants rated their financial burden of AA as moderately (n = 214 [31.7%]) or seriously (n = 170 [25.2%]) burdensome (Table 2). To manage these expenses, participants most commonly indicated using their savings (n = 279 [41.3%]), as well as cutting down on expenses (n = 272 [40.3%]), recreational activities (n = 248 [36.7%]), or spending for food or clothes (n = 229 [33.9%]); 123 participants (18.2%) lost an annual median of $500 (interquartile range, $200-$2250) from missing work. Participants reported a median spending of $1354 (interquartile range, $537-$3300) annually.
There is no cure for AA, and given the limited efficacy of medical treatments, many patients with AA use alternative therapies and cosmetic products.1,2 As demonstrated in this study, the totality of these treatment costs can lead to financial stress, including reduced spending on basic needs such as clothing and food.
These methods were limited by the calculated response rate. Although we cannot precisely determine the response rate, including everyone who was emailed the survey or saw it online as eligible makes our estimate conservative. Patients burdened with financial costs were more likely to respond to the survey, potentially introducing selection bias.
Nonetheless, over half of this cohort found AA to be moderately or seriously financially burdensome, and the average out-of-pocket costs of $1354 is similar to the average out-of-pocket costs of $1418 for patients with psoriasis.4 The real-life willingness to pay of this cohort reflects the consequences of AA on the everyday lives of patients. Although future work is required to confirm these results and determine their generalizability to the overall community of patients with AA, these findings suggest that the negative psychological consequences of AA may be compounded by financial distress, which has been shown to place patients at risk for worse quality of life.5
As payers begin to explore coverage around an increasingly promising pipeline for AA treatments, we hope that this evaluation can encourage broader financial coverage for treatments of this psychologically and financially burdensome disease—not just for pharmaceuticals, but for supplementary therapies as well. Physicians should be aware of the potential ramifications of treatment costs for patients and consider financial impairment as an unintended consequence of their recommendations.
Accepted for Publication: November 17, 2018.
Corresponding Author: Kathie P. Huang, MD, Department of Dermatology, Brigham and Women’s Hospital, 221 Longwood Ave, Boston, MA 02115 (email@example.com).
Published Online: February 27, 2019. doi:10.1001/jamadermatol.2018.5218
Author Contributions: Drs Li and Huang had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Li, Mostaghimi, Huang.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: Li, Tkachenko, Huang.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Li, Mostaghimi, Huang.
Administrative, technical, or material support: Mostaghimi, Tkachenko, Huang.
Conflict of Interest Disclosures: Drs Huang and Mostaghimi have received royalty payments from Pfizer for licensing of the ALTO tool and have participated in clinical trials related to alopecia conducted or suppoerted by Incyte and Aclaris. In addition, Dr Mostaghimi has received consulting fees from Pfizer. No other conflicts are reported.