I. Introduction

HS can be a debilitating disease and studies have shown that patients suffering from HS are more likely to be of low socioeconomic status, potentially making it challenging over time to cover medical co-payments, pay for medications and wound care supplies, and/or maintain a healthy diet.

This chapter provides recommendations on how to manage HS on a budget as well as suggestions on how to manage work/school, disability claims, transportation, and other considerations.

II. Work and School Considerations

Due to the recurrent pain and chronic nature of HS, people with HS lose an average of 34 workdays per year compared to the general population, which loses only 7.5 days per year. The most commonly reported triggers for flares include stress, sweat, and hot weather. In the ideal scenario, you manage to find successful treatments for managing your HS, so that your HS does not limit the type of job you can choose to pursue. However, if your HS makes it difficult for you to work outdoors because sweating triggers your symptoms, considering an indoor job or one that provides adequate shade may be helpful.

People with HS may experience pain and have limited mobility requiring a different job or changes in the workplace. You can request reasonable accommodations at work (such as padded chairs, standing desks, or looser-fitting uniforms to minimize friction on the skin) which can help make you feel more comfortable and therefore increase work productivity. If your disease is not well-controlled and you are unable to complete a full day of work, some options could include asking employers about the possibility of flexible work hours or applying for disability benefits (see below).

Those still in school may need to provide doctor’s notes for absences because of HS flares, ask for extensions on assignments, or even request adjustments to assignments that may be difficult to complete because of HS.

If you feel comfortable doing so, it may be worthwhile to consider sharing information with teachers and/or employers about HS, and the impact it may have on attendance or productivity This could potentially lead to better understanding and help address any needed accommodations during disease flares.

III. Disability Assistance

People with HS may miss work due to physical disability from their condition. In the case of being unable to work during severe flares, or after surgical procedures in the doctor’s office, one could apply for short or long-term disability benefits. The Social Security Administration lists several skin conditions that may qualify for disability assistance; HS is a condition that qualifies. There are also state-specific and private insurance options for obtaining disability payments when HS makes it difficult to work. Healthcare providers themselves do not determine whether patients are eligible for disability. Rather, they provide objective data regarding the condition and treatments, and a third party reviews the information and determines eligibility.

IV. Transportation

People with HS may struggle to make it to outpatient appointments for various reasons, including lack of transportation. Some healthcare plans may help with the travel costs associated with medical appointments, and it is worthwhile to ask insurance providers whether transportation to the doctor’s office is included in the coverage plan. Free or low-cost transportation may also be available directly through hospital and local county healthcare systems.

If one is eligible for disability, the Social Security Administration can also help with travel costs, and the Veteran’s Administration provides transportation to appointments for veterans or active-duty service members. If applicable, you may contact Medicaid to determine your eligibility for reimbursement of appointment travel costs. Maintaining accurate records of your travel and appointments may be important when trying to get reimbursement. Charitable foundations can also help with covering transportation costs, but this may be limited in availability, so researching them on the internet from time to time can be helpful.

V. Nutrition and Exercise

With HS patients, obesity is known to play a role in the severity of disease. Accessing nutritious food at a low cost may be challenging, particularly in neighborhoods that have fewer grocery stores with fresh produce and more fast-food options. However, there are several online resources available that may be helpful for people looking to improve their nutrition. The National Institute of Health (NIH) lists several tips for healthy eating on a budget, including buying bulk, using coupons when available, and comparing the unit price of items. The US Department of Agriculture (USDA) has advice regarding free and low-cost nutrition classes, resources on food composition and diet, as well as interactive tools for planning meals and exercise. Also, the USDA’s Supplemental Nutrition Assistant Program (SNAP) serves as a free resource with low-cost nutritional recipes for families. Outside of online resources, fresh fruits and vegetables may be found in community gardens, as well as local food banks and drives that are sometimes sponsored through hospitals and community centers.

Additionally, exercise can be challenging with time and financial limitations. However, there are many low-cost exercise options that do not require expensive equipment or significant time commitments. Some of these can be found at the U.S. Department of Health and Human Services health.gov website (https://health.gov/ourwork/nutrition-physical-activity/physical-activity-guidelines) with specific examples described. You can also consider bringing family members to your follow-up visits, which can help to make the home environment more encouraging for exercise and weight loss.

VI. Support Groups

Patients with chronic conditions who participate in support groups tend to have higher self-esteem and confidence in managing their condition. HS support groups can help you feel supported by people who may best understand the way you feel. Groups such as Hope for HS, HS Warriors, HS Connect, and the International Association of HS Network are national organizations with free resources available to people with HS. HS support group meetings can also be virtual, which removes the burden and cost of traveling to in-person meetings.

VII. Clothing Considerations

When purchasing clothing, it helps to avoid tight clothing, elastic bands, and bras with underwire. Choose looser fitting clothes. Drainage of lesions may require more frequent replacement of clothing, leading to increased cost. 100% cotton clothing is easy to find and reasonably priced, but you may also consider alternative materials like rayon and bamboo fabric that are also soft but more absorbent. Bulk shopping and searching for coupons and discounts online or at large retailers (such as Walmart, Amazon, Target), are small ways to help control costs.

VIII. Wound Supplies and Medications

Specialty wound care products may not be covered by insurance companies, and many people with HS may not have insurance to cover any wound care supplies. Even if supplies are covered, choosing which dressings to use can also be confusing given the many different brands and dressings. Patients and providers must recognize the difficulties in getting wound care supply coverage, and to keep trying to get insurance reimbursement through repeated applications. Please see Chapter 15 for more information on wound care.

The most affordable absorbable dressings in HS wound care are over-the-counter (OTC), and can often be bought in bulk – menstrual pads, adult diapers, and gauze. Abdominal pads are more expensive than other OTC dressings, but may be obtained in bulk from online pharmacies or surgical supply companies. Medicare, Medicaid, and other commercial insurance companies offer some coverage of more specialized wound care dressings as well. Information about your condition may need to be updated monthly to have insurance companies continue covering wound care supplies. Costs of tape and bandages can be lowered by using reusable wraps and biker shorts to help hold dressings in place.

Medication costs pose another financial stress for people with HS. Discounts for generic medications are available directly from various pharmacies. For instance, Good Rx offers coupons for generic medications to significantly lower their prices. Commonly prescribed medications for HS (i.e. antibiotics and oral contraceptives) can be found at Target and Walmart in 30-day supply and 90-day supply for $4 and $9, respectively (based on a search in 2022). Utilization of 90-day supply offers may also reduce monthly co-payments due to less frequent refilling of medications at pharmacies.

For more expensive medications like biologics, applications for patient assistance directly from the pharmaceutical company can sometimes result in partial or full coverage of the cost. Patients who feel comfortable can also explore clinical trials listed on government-run websites like www. clinicaltrials.gov that offer access to new and established HS therapies.