Health insurance coverage is often complex for people with EB (epidermolysis bullosa), a rare genetic skin condition. The information below covers some basic guidelines to keep in mind regarding health insurance coverage for EB. However, to completely understand insurance coverage, call your health insurance provider or contact an Edgepark Customer Care Specialist.

What is EB?

Patients with EB have extremely fragile skin due to a genetic abnormality that causes the skin to blister from the slightest friction or changes in temperature. There are several different kinds of EB; the severity of symptoms depends on the type of EB the person has.

How is EB care managed?

While some people with EB only experience mild symptoms, others require daily wound dressing changes, pain management, and careful nutrition care. The goal of treatment is not to heal wounds but to manage them.

What are the criteria for EB wound care on insurance forms?

The typical criteria for wound care usually do not apply to people with EB. For example, many insurers require wound measurements.  With EB, wounds will be on most of the body, so it’s impossible to measure each. Also, the wound locations can change by the day. Further, because of the fragility of the patient’s skin, many items that would typically be considered “convenience items” are necessary for the individual to take proper care of their skin. 

What additional documentation may be needed to obtain insurance coverage for EB patients?

Often, letters of medical necessity serve as clinical support for needed supplies. They can help explain and justify quantities of supplies required, frequency of supply orders, and necessity of typically noncovered items. In some cases, photographs of the wounds are also kept on file. It’s worth noting that the proper treatment of wounds provides comfort for the individual and helps prevent infections, which can require care and admission to the hospital.

How can Edgepark assist those with EB in getting their supplies promptly?

At Edgepark, we have a team dedicated to taking special care of people with EB. They help those with EB and their families by making the ordering process as easy as possible, helping them understand their insurance coverage, and sharing new information for improved EB care.