Association of Out-of-Pocket Health Care Costs and Financial Burden for Patients With Alopecia Areata

Abstract

This survey study examines responses from 675 individuals with alopecia areata and analyzes the out-of-pocket financial burden for this patient population.

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.

Methods

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.

Results

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).

Table 1. Out-of-Pocket Costs Reported by 675 Patients With Alopecia Areata in the Past Year.

Category	Costs, $		Patients, No. (%)
	Total	Median (IQR)
Transportation/parking to doctor visits in the past year	77 110	10 (0-50)	370 (54.8)
Copays/out-of-pocket deductibles for doctor visits in the past year	211 940	50 (0-300)	387 (57.3)
Medications (over the counter and prescription) for hair loss in the past year	138 152	15 (0-200)	348 (51.6)
Vitamins, supplements, or other treatments in the past year	112 736	50 (0-200)	457 (67.7)
Complementary and alternative therapiesa in the past year	123 825	0 (0-100)	210 (31.1)
Headwear or cosmetic optionsb in the past year	907 856	450 (50-1500)	552 (81.8)
Hair appointmentsc	195 607	50 (0-300)	378 (56.0)
Total out-of-pocket spending	1 767 225	1354 (537-3300)	NA
Approximate lost income/wages/earnings for patients who missed workd	279 412	500 (200-2250)	NA

Abbreviations: IQR, interquartile range; NA, not applicable.

^aExamples of complementary and alternative therapies include acupuncture, yoga, relaxation techniques, and support groups.

^bExamples of headwear or cosmetic options include scarves, hats, wigs, makeup, and artificial eyebrows or eyelashes.

^cHair appointments include stylings, cuts, and sessions for blow dries or colorings.

^dData available for 123 patients.

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.

Table 2. Financial Burden of 675 Patients With Alopecia Areata.

Financial Burden Response	No. (%)
“I had to use savings.”	279 (41.3)
“I had to borrow money/take out a loan/use credit.”	156 (23.1)
“I could not make payments on credit cards or other bills.”	79 (11.7)
“I sold possessions or property.”	47 (7.0)
“I worked more hours.”	176 (26.1)
“I had family members work more hours.”	56 (8.3)
“I cut down on spending for food/clothes.”	229 (33.9)
“I cut down on spending for health care for other family members.”	27 (4.0)
“I cut down on recreational activities.”	248 (36.7)
“I cut down on expenses in general.”	272 (40.3)
“I did not fill the prescription.”	73 (10.8)
“I filled only part of the prescription.”	22 (3.3)
“I took less than prescribed amount of treatment.”	0 (0)
None of the above	143 (21.2)
Financial Burden of AA Rating
Not a financial burden at all	84 (12.4)
Minor financial burden	190 (28.1)
Moderate financial burden	214 (31.7)
Serious financial burden	170 (25.2)
Catastrophic financial burden	17 (2.5)

Abbreviation: AA, alopecia areata.

Discussion

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.