Systemic Lupus is expensive to treat! This is the first in a series of discussions about strategies patients can use to get the best Lupus treatment possible. Starting with estimating the costs of lupus treatment, future posts in this series will focus on specific approaches and resources for getting effective and affordable treatment.
Sharing my research about options for patients with little or no insurance coverage is an underlying goal of this series, along with presenting approaches for making available treatments more effective.
Why do this series?
Reader statistics of search terms used to find this blog sometimes motivate me to discuss a new frequently searched topic. That is what gave me the idea for this series.
It is interesting that many readers find Lupus Adventures Between the Lines while searching for information on medical care costs. This new series is aimed at this incredibly important concern touching so many of us.
Many Lupus patients are uninsured or under-insured. The majority of patients with moderate to severe lupus have great difficulty continuing to work full-time jobs. For many, the loss of their job also means the loss of health insurance that helps them have access to treatment.
The Americans with Disabilities Act helps to keep the right to work with proper accommodations for many persons who are disabled by their Lupus. But, it offers no protection for those who can no longer do the essential functions of their job because of their health problems. A disabled patient must still be able to do the job, with or without reasonable accommodations that the employer agrees to give for their lupus or other disabling medical condition.
Lupus patients in all but the very highest income levels often have to make extremely difficult personal financial choices while trying to pay for appointments with doctors and specialists, hospitalization, medications, diagnostic tests, physical therapy, and other medical costs.
Whether finances are tight due to loss of a job, fixed income government or private disability insurance or the limits of part-time employment finding money for medical care is a challenge. At times, the financial pressures of treatment touch nearly every lupus patient in one way or another.
Estimating Annual Costs
The Lupus Foundation of America estimated that an average of over $12,600 is spent for the average lupus patient’s medical care each year, about $1,000 per month. Even with health insurance, the patient’s part of those costs still can total several hundred dollars per month.
For a lupus patient with no health insurance, there are fewer available and affordable options for their treatment, presenting great challenges to finding effective medical care.
Facts About Lupus Treatment Costs
According to a  Lupus Foundation of America membership survey, one in four patients receive their health care through a government-sponsored program, such as Medicare or Medicaid.*
More recent information from the American College of Rheumatology (ACR) in 2010 shows even higher average costs just two years after the earlier LFA survey:
A study at the ACR meeting describing data from 4 published analyses of costs in newly diagnosed or newly active patients with lupus found that the average cost per patient ranged from $13,735 to $27,531 a year compared to $7,794 to $9,788 in people without lupus. In patients with lupus nephritis, the costs were much higher, ranging from $29,034 to $62,651.**
Current cutting-edge treatments like the newest biologic drugs, such as Benlysta (belimumab), can cost a Lupus patient and their insurance companies anywhere from $35,000 to $100,000 more per year. Infusions with this new Biologic drug for lupus are very, very expensive, often costing as much or more than the average patient’s total annual income.
The ACR study also reported:
Most important, however, was that the researchers found little data on variations in costs based on disease severity, disease manifestations, and treatments. This is information that will become more important as the new biologic drugs enter the treatment arsenal. Although these drugs are more expensive than older therapies, if they can improve disease severity and reduce hospitalization and other direct medical costs, their overall costs may actually be lower than treatment with traditional therapies.**
However, the drug company co-pay assistance programs and clinical trials may offer no-cost or low-cost access co-pay assistance programs to help make these drugs more accessible for many uninsured and under-insured patients.
Even though I have a good job and good health insurance, I was surprised that I qualified for the Benlysta co-pay assistance program that has helped me pay just over $2,500 in infusion co-pays over the past 24 months.
Future Lupus Treatment Strategy Series Discussions
These, and other cost-cutting lupus treatment strategies will be addressed in more detail in future posts in this series.
It is my hope that this series will be encouraging and helpful to anyone striving to optimize their lupus treatment and improve their own treatment results.
*Lupus Foundation of America, “Statistics on Lupus”, @ http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroomreporters.aspx?articleid=247&zoneid=60
** Alliance for Lupus Research @ http://www.lupusresearch.org/research/lru/assessing_cost.html, referring to, Salwsky KA, et al. A Systematic Literature Review of the Direct Costs of Systemic Lupus Erythematosus (SLE) in the United States (US).