Financial Impact of Thyroid Eye Disease
Reviewed by: HU Medical Review Board | Last reviewed: October 2021
Receiving a diagnosis of thyroid eye disease (TED) can leave you feeling overwhelmed, stressed, or even confused.
Along with the physical symptoms of TED, many other aspects of your life can be affected by your diagnosis. On a personal level, TED can have a deep impact on your finances and wealth. The out-of-pocket costs for medical treatment, drugs, and therapies all add up over time.
On a larger scale, rare diseases can also affect the overall economy. Job losses or decreased work productivity, increased costs, and increased use of the healthcare system are just a few ways.1
According to the 2019 National Economic Burden of Rare Disease Study, the total cost of rare diseases to the U.S. economy in 2019 was $966 billion.1
Total costs related to TED vary from person to person. What we do know is that the financial impact of TED and all rare diseases are far-reaching for those affected, their loved ones, and the economy as a whole.
Personal costs of TED
For you, thyroid eye disease is personal. Many of the symptoms of TED are visible, changing your facial features. Because your face is the first thing people see, cosmetic changes can have a deep impact on your physical, mental, and social health. Even if you are the only one who seems to notice a difference, these changes matter and greatly affect how you feel about yourself.2
Orphan drugs
New treatment for TED is an exciting and hopeful achievement for those living with the disease. As of 2021, Tepezza® (teprotumumab) is the only drug approved by the U.S. Food and Drug Administration (FDA) to treat thyroid eye disease. Tepezza is an orphan drug. Orphan drugs are developed under a government act because they treat a rare disorder. Some people who take orphan drugs to treat rare conditions like TED spend thousands of dollars per year on them.3,4
Over the years, the out-of-pocket costs for orphan drugs have skyrocketed.
In fact, a 2019 report by America’s Health Insurance Plans (AHIP) shows that orphan drugs cost 25 times more than traditional drugs. This is an astonishing 26-fold increase in 2 decades.5
This can end up costing families tens of thousands of dollars per year for those who depend on these drugs. Even with medical insurance, co-payments for orphan drugs can overwhelm most household budgets.5
Additional treatments, therapies, and costs
Medical costs related to TED can add up quickly. Some of these costs include:1
- Visits to your doctor
- Insurance
- Drug costs
- Surgical costs, if needed
Studies have shown that people with rare diseases have more medical needs, miss more work, and retire early. Some also need caregivers if their disease progresses to that point.6
Plus, a person with TED is more likely to have other conditions at the same time. These are known as comorbid conditions. They make treatment more expensive because you are treating more than 1 condition.6
Rare diseases like TED add to the economic burden on the workforce as well. In 2019, absenteeism from work cost the U.S. economy nearly $150 billion. Early, forced retirement accounted for more than $135 billon.1
While many with TED are able to continue working, absenteeism and its effects are a real problem for many. Those with TED may be forced to live with physical, mental, and social burdens, ultimately affecting their jobs.7
The overall impact of rare disease on those living with the conditions, as well as families and society, is hard to put into words. Immediate attention is needed from lawmakers, researchers, doctors, and key stakeholders to find new ways to make treatment accessible and affordable for everyone.