Because of the lifelong nature of genetic disorders and the complex nature of disease management for genetic diseases, patients and physicians should consider the financial reimbursement issues that may accompany the delivery of various treatment options, symptom care, and medical management of an LSD.

The financial issues related to the LSDs are as varied as reimbursement for newly approved therapies to medical device reimbursement for items such as wheelchairs and ventilators to psychological or genetic counseling.

Despite the rarity of the LSDs, though, there are established resources that can help patients and families dealing with these diseases negotiate the issues of a health care system. Various agencies and organizations play critical roles in assisting, evaluating, and delivering a patient’s health care coverage. Some of the key roles can include:

Insurance company case managers – case managers within US-based insurance companies can provide support and case management for the patients’ respective insurance company.

Patient societies and associations – US or international societies may offer support and guidance to individual patients and families, but also play key roles in advocating for disease research and care to governmental agencies.

Company case managers – Case managers within pharmaceutical or biotechnology companies may offer support to patients and their families and provide reimbursement authorities with documentation and decision-making support related to their products.

Government agencies – Medical and financial coverage authorities who oversee the medical care of patients with rare diseases in their specific country. They often deal with both individual cases as well as the policy decisions for specific diseases.

There are advocates, resources, and supporting organizations who can guide patients and physicians through genetic disease management issues, offer experience in case management, and help expedite urgent needs for attention. Because each health care system, insurance company, and patient situation is unique and often complex, patients and families should consider taking a proactive role in their medical case management and to work with your physician on the best management decision.