How much does it cost to have POTS?
Although every patient is different, we wanted to get a picture of how much money is spent on treatments, doctor visits, lifestyle accommodations and other POTS-related expenses. The POTS Patient-Powered Survey asked several questions to get at this information. Below are the median costs, as estimated by POTS patients who answered the following questions.
Median monthly cost: $50
Range: $0 to $5500
n=306; 295 females and 11 males
Median monthly cost: $50
Range: $0 to $1,500
n=308; 298 females and 10 males
Median monthly cost: $90
Range: $0 to $10,000
n=297: 288 females and 9 males
Earlier findings of this survey, calculated that respondents had visited 8 different doctors, on average, who did not recognize POTS, before visiting the doctor who did. The cost of those doctor visits, with accompanying diagnostic tests or other medical costs, were not measured, but anecdotal reports included price tags up to tens of thousands of dollars for pursuing red herrings. My own journey included an early misdiagnosis of Lambert-Eaton Myasthenic Syndrome, which prompted a non-insured intensive week at the Mayo Clinic. This was likely an exception, but shows how faster diagnosis of POTS could save patients money.
Next, participants were invited to write in any additional costs of POTS. Below are the one-time expenses described:
Below are the additional ongoing expenses listed by patients, along with estimated cost, if it was mentioned:
Many patients wrote in that the biggest cost of POTS was having to stop working. 61% of respondents reported being unable to work at all. Details are below.
Able to work full-time, 82 Able to work part-time,82 Unable to work, 253
In order to estimate the cost of being unable to work, we looked up median wage and salary data from the US Department of Labor.
According to Bureau of Labor Statistics, median wages depend on age, gender, education level and geographic location, but the 2015 first quarter statistics are as follows:
Median weekly earnings of full-time male workers: $895
Median weekly earnings of full-time female workers: $730
Receiving disability benefits can help offset lost income for some patients. According to these survey findings, 20% of POTS patients reported receiving disability benefits.
Taken as a whole, these findings suggest that the cost of POTS can vary widely. Some POTS patients have said that the never-ending search for ways to feel better costs "whatever I can afford to spend."
Other patients pointed out that POTS had saved them money, although not necessarily in desirable ways. As one patient said, "I can't enjoy travel, drinking, eating out or going to the mall anymore, so I'm saving tons of money!"
Bureau of Labor Statistics, U.S. Department of Labor, Economic News Release, Usual Weekly Earnings Summary on the Internet at http://www.bls.gov/news.release/wkyeng.nr0.htm (visited June 18, 2015).
Bureau of Labor Statistics, U.S. Department of Labor, The Economics Daily, Educational attainment and earnings of women on the Internet at http://www.bls.gov/opub/ted/2014/ted_20140603.htm (visited June 18, 2015).