A chronic, life-long illness like lupus can have an out-sized financial impact on those with the disease. Lupus, in particular, can be damaging to finances since it strikes during a person’s prime career-building years of the 20s to 40s. When looking at the financial costs of lupus, those expenses can be broken down into:
- Direct costs of care such as insurance payments, copays, and prescriptions
- Indirect costs of care such as unrealized opportunities, underemployment, unpaid time off, and unemployment
Underemployment or unemployment
The main symptoms of lupus can make work-life hard or even impossible, especially fatigue, joint pain, and brain fog.
A 2012 Lupus Foundation of America survey found that two-thirds of its members reported a complete or partial loss of income because they could no longer work full-time. One-third had been temporarily disabled due to lupus, and 25 percent received disability payments.1
A 2017 study looked at employment among people with lupus and distinguished between those with milder, better-controlled disease versus those with more severe, more advanced lupus. It found that the average rate of unemployment ranged from 12 percent to 49 percent of those with lupus. As you would expect, those with severe flares and severe organ damage had the highest rates of unemployment, and severe fatigue, neurocognitive symptoms, and joint issues like arthritis were the biggest hindrance to continuing work. African Americans lost their jobs at twice the rate of whites.2-3
The cost of frequent doctor’s visits and hospital stays
Not only is going to the doctor no fun, but it places a significant time burden on working-age adults with lupus. One study looked at data from the years 2000 to 2016 and found that patients averaged 10 to 19 doctor visits a year. For the 14 percent to 34 percent who required a hospital visit, that averaged five to six days per stay.2 They also averaged one to two emergency room visits per year.4
The study also found that people with lupus average 2.3 sick days per month, compared to 0.3 sick days per month for the total U.S. workforce.4
Those with lupus nephritis, a serious kidney complication of lupus, had the highest rates of ER visits, hospital stays, and doctor visits.2,4
The finances of lupus care
Lupus care is expensive, even for those with mild symptoms. Here is what one study found that lupus care cost:
- Medical care for moderate or severe disease: $22,300 to $83,000 a year
- Medical care for mild disease: $8,900 to $15,000
- Pharmacy costs for all types of lupus: $1,572 to $13,138, or 19 percent of 23 percent of total direct costs
The study did not break down how much of these costs were paid by the individual or their family, and how much was paid by an insurance company or a government agency.
Costs of insurance
Twenty-five percent of people with lupus use one of the government-sponsored insurance programs, Medicare or Medicaid.1
For private insurance, monthly premium payments and out-of-pocket costs vary widely depending on the plan. It is not unusual for even mild lupus to cost $10,000 a year and that can grow into the tens of thousands of dollars quickly, depending on disease severity and the need for treatments, doctor visits, and hospital visits.2,4
Several governmental and non-profit organizations provide financial assistance to people with expensive, chronic conditions like lupus. These organizations may help with prescription costs, and insurance premiums, co-payments, and deductibles. Some provide help with specific equipment needs such as mobility devices, hearing aids, glasses, and home modifications. Ask your doctor or nurse for more information about these support services.