The insurance process for rare diseases such as LSDs can be time consuming and complex. We encourage patients with an LSD to seek out patient societies, companies, and case managers who can help support their insurance issues. There are healthcare professionals with expertise in reimbursement, insurance, case management, and the healthcare delivery system who may offer assistance and support in the following ways:

Provide insurance consultation to the patient and the healthcare professionals.

Provide assistance when necessary to the patient’s physician and office staff with information related to billing.

Assist in the preparation of correspondence to the third party payer at the patient’s request.

Assist in the coverage approval process.

Work with insured, underinsured, and noninsured patients to identify insurance resources.

Assist the patient and his or her physician by coordinating any insurance certification requirements.

Provide information about a disease management option to the insurance company.

Help optimize the insurance benefits of the patient.

Assist in the appeal process in the event that a patient’s coverage is denied.