What Is the Cost of Lupus Treatment?

Lupus is a lifelong, autoimmune condition for which there is no known cure. A person with lupus often experiences complex, chronic symptoms, such as extreme fatigue, swollen joints, sores, rashes, pain, fever, and depression. The condition can affect various parts of the body, including the kidneys, heart, lungs, nerves, brain, and skin. And it often causes both cognitive difficulties and physical impairment.

About 1.5 million people in the U.S. have lupus. While it can affect anyone, about 90% of the people who have lupus are female. Most often, the symptoms appear between the ages of 15 and 45.

Some racial and ethnic groups are more affected by lupus than others. This includes people who identify as:

• Black or African American

• Hispanic or Latino

• Asian American and Pacific Islander (AAPI)

• American Indian and Alaska Natives

Promotional Disclosureinfo_outlined

ADVERTISEMENT

Sponsored By

Looking to save on BENLYSTA (belimumab)?

BENLYSTA is for people 5+ with active SLE (lupus) or active lupus nephritis on other lupus medicines. Not for people with severe active central nervous system lupus.

Explore my options

Important Safety Information

Do not use BENLYSTA if you are allergic to belimumab or any ingredients in BENLYSTA.
The most important information about BENLYSTA
Immunosuppressive agents, including BENLYSTA, can cause serious side effects. Some of these may cause death.
• Infections:
fever, chills, pain or burning with urination, urinating often, coughing up mucus, or warm, red, or painful skin or sores on your body. Infections could be serious, leading to hospitalization or death.
• Allergic (hypersensitivity) reactions:
itching, swelling of the face, lips, mouth, tongue, or throat, trouble breathing, anxiousness, low blood pressure, dizziness or fainting, headache, nausea, or skin rash. Serious allergic reactions can happen the day of, or in days after, receiving BENLYSTA and may cause death.
• Mental health problems and suicide:
thoughts of suicide or dying, attempt to commit suicide, trouble sleeping (insomnia), new or worse anxiety or depression, acting on dangerous impulses, other unusual changes in your behavior or mood, or thoughts of hurting yourself or others.

Before receiving BENLYSTA, discuss with your healthcare provider if you:
• think you have an infection or have infections that keep coming back. Do not use BENLYSTA if you have an infection unless your healthcare provider tells you to.
• have or have had mental health problems such as depression or thoughts of suicide.
• have recently received or may need a vaccination. If you are receiving BENLYSTA, you should not receive live vaccines.
• are taking any medicines, including prescription, over-the-counter, vitamins, and herbal supplements.
• are allergic to other medicines.
• are receiving other biologic medicines.
• have or have had any type of cancer.
• have any other medical conditions.
• are pregnant or plan to become pregnant. It is unknown if BENLYSTA will harm your unborn baby. Talk to your healthcare provider about whether to prevent pregnancy while on BENLYSTA. If you choose to prevent pregnancy, you should use an effective method of birth control for at least 4 months after the final dose of BENLYSTA.
• become pregnant while receiving BENLYSTA, talk to your healthcare provider about enrolling in the BENLYSTA Pregnancy Registry. You can enroll in this registry by calling 1-877-311-8972 or go to https://mothertobaby.org/ongoing-study/benlysta-belimumab/
• are breastfeeding or plan to breastfeed. It is unknown if BENLYSTA passes into your breast milk.

Possible side effects of BENLYSTA
• Progressive multifocal leukoencephalopathy (PML). PML is a serious and life-threatening brain infection. PML can result in death or severe disability. Tell your healthcare provider right away if you notice any new or worsening medical problems: memory loss, trouble thinking, dizziness or loss of balance, difficulty talking or walking, or loss of vision.
• Cancer. Medicines that affect the immune system, including BENLYSTA, may increase your risk of certain cancers.

The most common side effects of BENLYSTA are nausea, diarrhea, fever, stuffy or runny nose and sore throat, persistent cough, trouble sleeping, leg or arm pain, depression, headache, and pain, redness, itching, or swelling at the site of injection (when given subcutaneously). These are not all the possible side effects of BENLYSTA. Call your doctor for medical advice about side effects.

Please see Prescribing Information and Medication Guide for BENLYSTA.

What is BENLYSTA?
BENLYSTA is a prescription medicine used to treat people 5 years of age and older with active systemic lupus erythematosus (SLE or lupus) or active lupus nephritis (LN) (lupus-related kidney inflammation) who are receiving other lupus medicines. It is not known if BENLYSTA is safe/effective in people with severe active central nervous system lupus.

It is not known if BENLYSTA, given under the skin, is safe/effective in:
• children with SLE under 5 years of age or weighing less than 33 lbs
• children with LN under 18 years of age
It is not known if BENLYSTA, given in a vein (intravenously), is safe and effective in children less than 5 years of age.

BENLYSTA IV is available as 120 mg in a 5-mL single-dose vial and 400 mg in a 20-mL single-dose vial. BENLYSTA SC is available as a 200 mg/mL single-dose autoinjector and prefilled syringe.

Trademarks owned by or licensed to the GSK group of companies.
©2024 GSK or licensor.
PMUS-BELWCNT240036 October 2024
Produced in USA.

Certain groups — Black, Hispanic, and AAPI — also have earlier onset of the condition.

These social determinants of health have consequences. For instance, Black people with lupus have a significantly lower life expectancy than white people with lupus. And Black females, in particular, are disproportionately impacted by the condition.

There are different types of lupus. The most common is systemic lupus erythematosus (SLE), which we will discuss in this story.

What causes lupus?

The cause of lupus is unknown. But researchers who study why some people develop lupus and others don’t have identified some possible causes, including:

• Hormones like estrogen: Lupus is more common in females who are in their childbearing years, when estrogen levels are at their peak. 

• Genetics: There are over 50 genes that are more common in people with lupus. These genes don’t cause the disease, but many researchers think they play a role in its development. Groups that have a higher risk of developing lupus include people of African, Asian, Hispanic or Latino, Native American, Native Hawaiian and Pacific Islander descent.

• Abnormal processes in the body: Your body is supposed to clear away dead or damaged cells. If it doesn’t, it could cause your immune system to attack your cells and tissues. Eventually, this could lead to lupus.

• The environment: Researchers believe that environmental factors can trigger lupus, such as viruses, chemicals, sunlight, and even stress. 

What is the most common treatment for lupus?

A typical treatment plan for lupus involves controlling your immune system and your symptoms, as well as protecting your organs from damage.

Treatment for lupus often involves a combination of medications that will:

• Keep your immune system from attacking your body: These medications include immunosuppressives, such as methotrexate, and biologics, such as belimumab (Benlysta).

• Help with inflammation: These medications include steroids, such as prednisone, and nonsteroidal anti-inflammatory drugs (NSAIDs), like ibuprofen (Motrin, Advil).

• Prevent blood clots: These medications include heparin injections and low-dose aspirin.

• Protect your skin: Antimalarial medications like hydroxychloroquine (Plaquenil) can help your skin from reacting to the sun’s rays and prevent lupus rashes.

How much does it cost to treat lupus?

Health insurance typically covers the medical care you’ll need for lupus. Still, treating the condition typically requires the expertise of several medical specialists and multiple prescription medications. The copays for those visits and medications alone can add up.

Generally, lupus treatment costs increase with the severity of the condition.

A study published in 2021 tracked more than 2,000 people with lupus and found a heavy cost burden to treat the condition. According to the study, the average cost for treatment in the year after diagnosis is:

• Mild lupus: $13,415

• Moderate lupus: $29,512

• Severe lupus: $68,260

Hospitalizations and outpatient visits were the leading cost drivers.

How much do common lupus medications cost?

Prescription medications are a large part of lupus treatment costs. Below, we look at prices for common lupus medications and potential ways to save.

Immunosuppressive medications

• Methotrexate: This medication is available as a generic tablet and injection. It is covered by Medicare and commercial insurance plans. And it may cost as little as $14.09 with a GoodRx coupon.

• Mycophenolate (CellCept): This medication is available in brand-name and generic versions, in tablet, capsule, and suspension forms. Tablets, the most common version, are covered by most insurance plans at a copay of $57.50 to $87.50. With a GoodRx coupon, the price of the generic may be as low as $19.20. You may qualify for copay assistance and a patient assistance program for brand-name Cellcept. 

• Azathioprine (Imuran): This medication is available in brand-name and generic tablets. It’s covered by Medicare and most insurance plans. With a GoodRx coupon, you may be able to pay as little as $12.71 for the generic, which may cost less than your copay. 

• Cyclophosphamide: This medication is available as tablets, capsules, and injections. It’s covered by most Medicare and commercial insurance plans. With a GoodRx coupon, you may be able to pay as low as $153.01 at certain pharmacies. 

Biologics

• Voclosporin (Lupkynis): These capsules are only available as a brand-name medication and at certain specialty pharmacies. Medicare Part D prescription plans don’t usually cover this medication, but Medicare Part B does in some cases. Coverage under commercial insurance plans varies by formulary. And the manufacturer offers copay assistance contingent on eligibility. 

• Belimumab (Benlysta): This brand-name medication is available as an IV infusion, which is given by your provider, or as an injection you give yourself at home. If you’re prescribed the at-home injections, you’ll typically need to get them from a specialty pharmacy. Most Medicare Part D prescription plans cover this medication. But coverage by commercial insurance plans varies by formulary. Even with a GoodRx coupon, a carton of 4 autoinjectors will cost more than $4,000. The manufacturer offers a copay assistance program based on eligibility.

• Anifrolumab (Saphnelo): These brand-name IV infusions, which are an add-on treatment for people taking other lupus medications, are administered once a month by a healthcare provider. When it was approved in 2021, Saphnelo was the first new SLE medication to be approved in 10 years. You cannot fill a prescription for this medication at a regular pharmacy. If you have insurance, check your formulary to see if Saphnelo is covered. The manufacturer offers savings options, including a copay assistance program and a patient assistance program, that could drop your out-of-pocket costs to $0. 

What other factors affect the cost of lupus treatment?

Beyond medications, these medical services can drive up your costs for lupus treatment:

• Healthcare provider visits for managing your condition

• Outpatient care, blood work, and scans

• Emergency visits for flare-ups and infections

• Dialysis if you have kidney failure

• Other services such as medical transportation or home services

• Hospitalization

Hospitalization is common for people with lupus. One year or more after diagnosis, half of people with a severe form of the disease have had a hospital stay, 22% with a moderate form have had an overnight stay, and 13% with a mild form have been hospitalized. The average 3-day hospital stay results in a $30,000 bill.

As mentioned, the services you will need, and their price tags, vary based on the severity of your lupus. If you need help paying for the costs of living with lupus, check out this Lupus Foundation of America video series on financing your medical care.

Reducing and controlling treatment costs is especially important for people diagnosed with lupus. It’s common for people with lupus not to fill prescriptions they can’t afford. One recent study found that nonadherence — not taking medication as prescribed — because of cost was twice as likely for people with lupus than those who did not have the condition (22% versus 10%).

Is lupus treatment covered by insurance?

Most health insurance plans, including Medicare and Medicaid, cover a wide range of services and medications for lupus. Keep in mind that, if you have insurance, seeing in-network providers will reduce your out-of-pocket costs. 

If you have original Medicare, you can use this procedure price lookup tool to estimate some of your expenses. And you can also consider a Medicare supplement (Medigap) plan, which can help you save on the out-of-pocket costs of living with a chronic condition.

What if I need lupus treatment and don’t have insurance?

There are many patient assistance programs and nonprofit organizations that provide support for people with lupus who do not have insurance.

A great place to start is the Lupus Foundation of America’s National Resource Center on Lupus. You’ll find information about getting treatment for lupus when you don’t have insurance. Some possible resources you can take advantage of are:

• Manufacturer discounts for medications, such as the ones mentioned above

• Patient assistance programs offered by manufacturers

• Patient assistance nonprofits, such as the HealthWell Foundation

• Clinical trials

Whether you have insurance or not, expenses related to lupus go far beyond medications and medical services. The potential costs also include transportation for medical services as well as lost income because of time away from work for healthcare or lupus-related illness.

If you need further information about how to manage the costs of living with lupus, explore this list of financial assistance resources from the Lupus Foundation of America.

Can you fight lupus without medication?

Effective lupus treatment and management usually requires taking prescription medications. This is also true for slowing down the condition’s progression.

Sometimes, people turn to alternative medicine as a replacement for their existing treatment plan. And others may use complementary medicine, like supplements or creams, in addition to prescription medications. But you should always consult your healthcare provider before starting, stopping, adding to, or replacing your treatment plan. 

You can learn more about alternative and complementary medicine from the National Center for Complementary and Integrative Health and the Lupus Foundation of America’s National Resource Center on Lupus.

Why trust our experts?

Written by:

Lorraine Roberte

Lorraine has been writing in-depth insurance and personal finance content for 3 years. She has written hundreds of articles on these topics, with her work appearing on such sites as the Balance, the Simple Dollar, ConsumerAffairs, and I Will Teach You To Be Rich.

Edited by:

Cindy George, MPH

Cindy George is the senior personal finance editor at GoodRx. She is an endlessly curious health journalist and digital storyteller.

Reviewed by:

Alyssa Billingsley, PharmD

Alyssa Billingsley, PharmD, is the director of pharmacy content for GoodRx. She has over a decade of experience as a pharmacist and has worked in clinical, academic, and administrative roles.

Our editorial standards

Meet our experts