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Yet One More Thing to Deal With

It can seem like life just keeps piling on for rare disease patients. In addition to the discomforts and stresses of managing a chronic illness to greater and lesser degrees of success, there is a significant, sometimes overwhelming, financial burden that comes along. In February 2021, the rare disease organization EveryLife Foundation published a report breaking down the economic cost of living with a rare disease.


In 2019, the total cost of 379 rare diseases in the US was $966 billion – nearly one TRILLION dollars! This figure includes three categories: $418 billion in direct medical costs including tests, treatments and prescriptions; $437 billion in indirect costs including loss of productivity from absenteeism, early retirement and lower effectiveness due to poor health; and $111 billion in non-medical and uncovered expenses which refers to costs such as transportation to medical appointments, hiring health aids and home/vehicle modifications.


These large figures represent the cost of rare diseases to the country as a whole, but the impact to individuals can be pretty startling as well. The financial burden to each patient varies by condition and also, depends on how each individual is affected by the disease. Sickle cell disease patients, for example, are estimated to spend an average of $1,389 per month on direct medical costs, which translates to approximately $460,000 over a lifetime. A new drug recently approved for cystic fibrosis patients which has been lifesaving for many people, costs $300,000 per year. These figures do not include transportation, lost wages and retirement, special dietary requirements and OTC products.


Financial pressures add an intense layer of stress to the already precarious life of individuals in the rare disease community.

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