Rare Disease Treatment Is Costly—Delayed Diagnosis Makes It Even Worse
In the US, rare disease diagnosis delay often takes around six years, leading patients to pay for ineffective treatments.
In the US, rare disease diagnosis delay often takes around six years, leading patients to pay for ineffective treatments.
The true cost of healthcare for people with rare diseases has long been underestimated. Recent research shows that their medical expenses are three to five times higher than those without a rare disease. These increased costs stem from frequent hospital visits, expensive treatments, specialized care, and prolonged diagnostic delays.
A doctor of this Reddit user who claimed to have two rare conditions, Budd-Chiari syndrome and Polycythemia Vera, suggested using medications that would significantly improve his condition, but his medical insurance company denied his coverage.
Another user with a rare diagnosis in need of IVIG has also been rejected coverage by their insurance company. They claim they have been fighting to get IVIG approved as part of their treatment, as it's their best chance at remission and could extend their life expectancy from 5-10 years to 30 years. IVIG meets all the necessary criteria for approval by insurance, but it will not be automatically approved due to one key requirement: it must be proven to consistently work across many cases. Unfortunately, there aren't enough patients in the U.S. to demonstrate this reliably to insurance companies, even though IVIG has shown positive results in extending life expectancy previosly
Reports show that treating people with rare diseases costs around 10 times more per patient each year than treating people with more common diseases. Nearly 60% of those costs are covered by patients themselves or their families.
The same data shows that patients with rare diseases spend from $30000 to $60000 for medical and non-medical treatment costs. In most cases, non-medical costs are higher, and medical costs that are not covered by insurance companies can make up to hundreds of dollars a year, which patients have to pay themselves.
Besides complications with insurance companies, patients with rare diseases struggle with diagnosis delays. Data shows that on average, it takes around six years for them to get diagnosed, leading to both physical pain and increased treatment costs.
Researchers estimate that delayed diagnoses can rack up between $86,000 and $517,000 in extra costs per patient, covering both medical and other expenses in the years before diagnosis. However, these estimates do not include logistics costs, as travel expenses and time.
