Help Us Get a New Treatment for Lupus Nephritis Listed on the PBS

Lupus is an autoimmune disease, which means the body’s immune system mistakenly attacks healthy tissue and organs. Lupus causes long-term inflammation, swelling, pain and damage that can affect many parts of the body.

While the exact cause is not known, experts believe that people with a genetic predisposition to the disease may develop lupus when something in their environment triggers it. Triggers include certain medicines (particularly anti-seizure, blood pressure and antibiotic medications), certain chemicals, tobacco smoke, infections and sun exposure.

Lupus is difficult to diagnose and treat as it has a wide range of symptoms, people have different triggers and combinations of symptoms, and symptoms can range from mild to severe.

There are four types of lupus:

• Systemic lupus erythematosus (SLE).Often simply referred to as “lupus”, this is the most common form of lupus. The inclusion of the word “systemic” means it can affect many areas of the body — including the kidneys, brain or central nervous system, blood and blood vessels, skin, lungs, heart and joints.
• Cutaneous lupus. A form of lupus that is limited to the skin.
• Drug-induced lupus. A lupus-like disease caused by certain prescription drugs.
• Neonatal lupus. A rare condition that affects infants of women who have lupus.

It is estimated that more than 20,000 Australians live with SLE. More than 90 per cent of people with SLE are women, primarily young women who are generally diagnosed between the ages of 15 and 45.

What is Lupus Nephritis?

Lupus nephritis (LN) is a serious complication of SLE that causes the immune system to attack otherwise healthy kidney cells. Up to 60 per cent of people with SLE go on to develop lupus nephritis. Inflammation of the kidneys can affect the overall renal (kidney) system’s ability to properly remove waste from the blood, maintain the correct amount of body fluids, and regulate hormone levels to control blood pressure and blood volume.

LN generally develops within five years of the onset of SLE symptoms. Symptoms include weight gain, swelling, blood and foamy appearance in the urine, increased urination frequency, and high blood pressure. However, in its early stages, the symptoms of lupus nephritis can go undetected. If LN is not treated, symptoms can get worse and lead to kidney failure. People experiencing serious kidney complications like kidney failure may need either regular dialysis or a kidney transplant. Early intervention with proven treatments helps prevent end-stage kidney disease.

There are five classes of lupus nephritis (numbered 1 to 5). These are classified according to the amount, location, and type of kidney cell damage visible in a biopsy sample under a microscope. The numbers are not used to rank the severity of damage; instead, they reflect how the kidneys are affected. For example, someone with class 5 LN may not have more kidney damage than another person with class 3 LN. The class number is used to determine the most appropriate treatment for that LN class.

Classification of a person’s LN can change from one class to another over time.

How is Lupus Nephritis Currently Treated?

While there are a variety of treatments (including biologics that target specific parts of the immune system) for SLE, many of these are not suitable or have not been tested for LN. In Australia, the standard of care for people with LN is a combination of steroids (prednisolone) and a general immunosuppressant (usually mycophenolate).

Steroids are an effective way to manage the inflammatory symptoms of many autoimmune conditions. Still, their long-term use increases the risk of developing many other health issues, such as diabetes, cataracts, weight gain, osteoporosis and high blood pressure.

In general, biologics have fewer side effects than oral medications because they do not pass through the digestive system. Instead, they are directly injected or infused into the body.

About Obinutuzumab

Obinutuzumab (Gazyva®) is the first biologic immunosuppressant proven to lead to the complete restoration of kidney function (remission) in many adults with class 3 or 4 LN when combined with standard treatment. In a clinical trial, 43 per cent of participants achieved kidney remission and reduced steroid use while using obinutuzumab plus standard treatment, compared with 31 per cent using placebo plus standard treatment.

Like all medicines, obinutuzumab has potential side effects. These include increased risk of infections, infusion-related reactions, and reduced white blood cell count. Rare side effects include Progressive Multifocal Leukoencephalopathy (a rare and serious brain infection caused by a virus) and the return of a hepatitis B infection for those with a history of hepatitis B. Overall, these risks are very similar to standard LN treatment or the natural progression of LN.

Obinutuzumab is already subsidised through the Pharmaceutical Benefits Scheme (PBS) in Australia for certain types of lymphoma and leukemia. The out-of-pocket cost to patients with these conditions is over $4,600 per prescription; however, the PBS price is currently $31.60 ($25 as of 1 January 2026). Obinutuzumab has also been approved for use in Australia for LN, but it is not yet subsidised under the PBS, meaning LN patients must pay full price.

At its March 2026 meeting, the Pharmaceutical Benefits Advisory Committee (PBAC) will consider subsidising obinutuzumab through the PBS for the treatment of adult patients with a confirmed diagnosis of active class III or IV lupus nephritis, with or without class V disease, who are receiving standard therapy with mycophenolate and corticosteroids.

Why We Want to See Obinutuzumab Subsidised Through the PBS

The standard of care with steroids and mycophenolate does not work for all LN patients, and one of the aims of treatment with obinutuzumab is early intervention to keep the kidneys working to prevent end-stage kidney disease and to reduce the use of steroids. Obinutuzumab has the potential to improve the patient’s quality of life by reducing the risk of flares and side effects due to steroid treatment.

We believe that, even if obinutuzumab does not work for everyone, many people will benefit from it, and those people deserve access to the best treatment possible, just as those with other autoimmune conditions do.

What We’d Like You to Do

The PBAC welcomes submissions from patients, carers, health professionals, consumer groups or organisations and members of the public on medicines submitted for PBAC consideration.

CreakyJoints Australia would like to collate your comments into a single submission and send it to the PBAC on your behalf. Your comments can respond to any or all of the following questions:

• For those with lupus nephritis, let us know how it affects your life. Try to be as specific as possible, including impacts on everyday activities, school, family, friends, and mental and emotional health.
• For those with systemic lupus erythematosus (SLE) but without lupus nephritis, let us know how SLE affects your life and how you feel about the strong likelihood of developing lupus nephritis at some stage.
• For those who use biologics for other autoimmune conditions, let us know how they have improved your health and quality of life.
• For everyone, what do you see as the advantages of obinutuzumab? For example, what impact could it have on the lives of people with lupus nephritis?
• What do you see as the main disadvantages of obinutuzumab?

You are welcome to provide any additional comments you would like the PBAC to consider.

How to Submit Your Comments to Us

Please send your responses to us by:

• Typing your comments into a Word document and attaching that to your email OR
• Typing your comments directly into your email.

Your comments can be as simple as a few bullet points or as long as two or three paragraphs.

Please email your comments to Rosemary Ainley at rainley@ghlf.org.au no later than 5 pm on Friday, 9 January 2026. We will collate your replies into a single submission and send it to the PBAC on your behalf.

If you wish to make your own submission directly to the PBAC, you can do so at ohta-consultations.health.gov.au/ohta/pbac-march-2026. You are welcome to contact us for tips on writing your own effective submission.

Kind regards,

The CreakyJoints Australia team

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