Under most Minnesota-based health insurance policies, Minnesotans with rare diseases must first see doctors and specialists within their insurance network before being referred to see an out-of-network specialist. Due to the nature of rare diseases, few doctors may be aware of the disease, much less able to treat the condition. This requires a person with a rare disease to see many doctors and can be both a time and financial burden on a person with a rare disease. In many cases, a person with a rare disease knows exactly which specialist they need to see, especially if there is a limited number of specialists who can accurately diagnose and treat the condition. Updating Minnesota law to require health insurance plans to allow people with rare diseases to see rare disease specialists right away, regardless if they are in-network or not, would save time and reduce the financial burden on the person with the rare disease.
Many disabilities are manifestations of rare diseases. Rare disease patients often have diagnostic odysseys, waiting for an average of 6 years from the onset of symptoms for an accurate diagnosis. Misdiagnosis and incorrect treatment are frequent in rare diseases. During the diagnostic odyssey, patients suffer from loss of quality of life, disease progression, incorrect treatment, and sometimes irreversible complications. At the same time, unnecessary consultations cause substantial costs for the individual and healthcare systems. Before the correct diagnosis is made, patients see an average of 7.3 physicians. Therefore, there is an urgent need to improve rare disease diagnosis.
- Minnesota Consortium for Citizens with Disabilities
- Gillette Children’s Specialty Healthcare
- Rare Disease Advisory Council
Insurance Companies and health plan lobbyists may oppose this bill because of perceived increased costs to insurance companies; however, it is also possible that this could reduce the cost to insurance companies because it reduces the number of hospital and physician visits for the patient. Health insurance cost analysis would be beneficial.
Goal of Policy
Rare diseases cause a wide range of disabilities, so a bill to improve access to diagnosis and treatment of rare disease would have a major impact on the quality of life of many Minnesotans with disabilities.