One Patient's Positive Perspectives

TODAY is World Lupus Day!

The Diagnosis and Treatment of Lupus:  Lupus can be an expensive disease.

The Lupus Foundation of America (LFA) reports that “the average annual cost to provide healthcare for a person with lupus is $12,643, and rises to nearly $21,000 when lost work productivity is included.” However for those of us who are receiving the new biologic drugs, the real cost to our insurance companies is now many times greater than treatment with the standard medications included in the LFA’s estimates.

Biologic Drug Infusions Cost More than other treatments

Costs for the New Biologic Drugs are More

I recently discovered that the real cost to my self-insured employer for my first nine Benlysta infusions was about three times the amount estimated in the literature I had read from the drug company. In a conversation with my rheumatologist, he validated that the charges were reasonable and customary for infusions administered in an outpatient hospital setting.

Apparently, the published cost estimates for Benlysta of about $40,000 per year are based upon the costs when infusions are administered at the rheumatologist’s office. The drug is ordered through a pharmacy by the physician, and paid for through the patient’s prescription coverage and applicable co-pays.  However, in a hospital outpatient setting the drug is paid for under a patient’s major medical insurance coverage.

Costs for Lupus Treatment have risen

Costs have gone up in recent years

In comparison, several years ago when I had two Rituximab infusions, the entire billed cost for both eight-hour infusion sessions in a hospital outpatient cancer infusion center cost about $38,000. The drug costs were paid by Genentech, the drug manufacturing company under a Phase III clinical trial for lupus. My insurance company agreed to pay the $3,000 required for the outpatient infusion center and the infusion procedures each time.

My other medications cost my employer and me thousands of dollars each year. While also treating for asthma and allergies, the majority of my medication costs are borne by my self- insured employer through a health insurance company working as the third-party administrator.  My coverage has an annual stop-loss of $1,000 for my prescription co-pays, which is a great blessing.  The stop-loss helps keep a predictable limit on my out-of-pocket medication costs each year, but the $1,000 I pay is a small fraction of the total prescription costs paid by my employer’s health insurance plan.  After mid-year when my co-pays reach $1,000, my remaining prescriptions for the year have no more co-pays.

Total costs are more with late lupus diagnosis

Total Medical Costs, Even with Co-Pays are High

Other medical costs include medical co-pays.  My rheumatologist is not a member of any of the health maintenance organization (HMO) insurance plans, as his thriving practice does not financially require him to submit to the limitations of the insurance companies for his livelihood.  My primary care physician, who is a member of my insurance plan, coördinates and supports the recommendations of my rheumatologist for my care.  I pay the full price for all the office visits with my rheumatologist, usually somewhere between $85 and $140 per visit.  This extra amount per visit over the amount I would pay to see a specialist on my health insurance plan ($35) is a small price to pay to get an expert in lupus to manage and oversee my treatment plan.  Every year I pay a few hundred well-spent dollars to my rheumatologist.

All procedures, lab work and diagnostic exams are paid through my primary care physician and providers covered by my insurance, without any co-pays for most of these services.  My total out-of-pocket co-pays and prescriptions usually total around $3,000 per year.  I estimate the total costs to my insurance plan are an extra $130,000 to $150,000.   Before the Benlysta infusions, the total costs were probably closer to $30,000 to $50,000 in years I had no hospitalizations.

Why are my total costs so high, compared to the estimates from the LFA?  My lupus was not diagnosed until it had escalated to a more advanced level and eventual organ involvement.

World Lupus Day is May 10, 2012

Why is lupus awareness so important today, on World Lupus Day?

The early diagnosis and treatment of lupus helps limit the severity and mortality of lupus.  If I had been diagnosed as a child and treated with the normal standard care for lupus throughout the first half of my life, my lupus might have remained in a mild state.  The progression to organ involvement also means the increase in costly payments and medications, providing there are funds and coverage available to pay for them.

For women without insurance resources, the early diagnosis and treatment of lupus is even more critical!

Efforts to treat mild lupus, and keep it from progressing and worsening will limit the extent of severity and costs for treatment throughout the life of a lupus patient.  The costs for treatment of mild lupus, controlled by Plaquenil and occasional steroid medications, might stay affordable and available for most patients, even if they have no insurance coverage.

The costs of treatment like what I receive for my lupus are absolutely unavailable to most patients without insurance coverage or even funds to pay their sizable co-pays.  I am grateful and thankful for the resources available to me to pay for my lupus medical care!

World Lupus Day – Sign the Pledge!

Early lupus diagnosis means a longer healthier life and lower medical costs

Lupus awareness means patients are diagnosed earlier.  Earlier diagnosis means less severe lupus over the course of a patient’s life.  Less severe lupus means less risk for organ damage and lower mortality rates.  Lupus awareness means improved lupus quality of life and longer life span for every lupus patient who is diagnosed and treated in a timely manner!

Sign the World Lupus Day Pledge!

Comments on: "World Lupus Day – Treatment of Lupus: Fact #10 – It is expensive!" (5)

  1. […] discounts only go so far though, and Emilie is lucky that her lupus didn’t require drugs like Benlysta or Rituximab, which would have cost tens of thousands of dollars – not covered by her […]

  2. […] 10. World Lupus Day – Treatment of Lupus: Fact #10 – It is expensive! – May 10, 2012 – 718 views […]

  3. Hello, I just wanted to say thanks for keeping up such a great resource here. I really appreciate all the information that you have provided on lupus and other autoimmune conditions. I also wanted to thank Stephen for sharing that really great infographic on lupus! With that in mind, I have another infographic on lupus that I was hoping to share with you guys too. This one is titled Lupus: a Closer Look at this Autoimmune Condition. I hope you get a chance to check it out at

    • I saw this post, and thought that this was really great! Autoimmune diseases like this one sometimes do not get enough exposure, and only through efforts like this one will more people ever learn about them. I have been reading a number of articles on lupus lately, and one in particular caught my eye. Apparently, medical researchers from Stanford are working with Intel scientists in order to develop a new silicon chip technology for lupus. These chips are actually designed to be able to identify patients who have a more severe form of lupus.

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