[Rare diseases from a life insurance perspective]

Area of Science:

• Medical Science
• Genetics
• Public Health

Background:

• Rare diseases affect a significant population, with 4 million in Germany alone.
• Despite improvements in diagnosis and treatment, long-term prognosis data remains scarce for many rare conditions.
• Centers of Competence facilitate networking and information sharing, enhancing patient care.

Purpose of the Study:

• To address the increasing number of life assurance applicants with rare diseases.
• To highlight the need for specialized expertise in assessing mortality and morbidity risks for these individuals.
• To emphasize the importance of evidence-based medical assessment for legal compliance and reputation management.

Main Methods:

• Review of current definitions and prevalence of rare diseases.
• Analysis of trends in life assurance applications from individuals with rare diseases.
• Discussion of the necessity for biomathematical, medical, and actuarial expertise.

Main Results:

• Rare diseases, though individually uncommon, collectively affect a large population.
• Advances in genetics and collaborative networks have improved care for some rare diseases.
• Insurers face challenges in risk assessment due to limited long-term data on rare diseases.

Conclusions:

• Effective risk assessment for life assurance requires specialized expertise when dealing with rare diseases.
• Evidence-based medical evaluation is crucial for insurers to manage legal and reputational risks.
• Continued focus on rare diseases by policymakers and society underscores the need for robust assessment strategies.