There is currently a global shortage of tocilizumab (Actemra). As a result tocilizumab products are in limited supply in Australia too. If you are currently taking tocilizumab (Actemra), these shortages may affect your treatment.
A Consumer Webinar was held and recorded on 8 September 2021 to share more about this issue and its impact on Australian patients who rely on Actemra for treatment of their arthritis. The webinar was presented by:
- Professor Catherine Hill, President, Australian Rheumatology Association
- Elspeth Kay, Assistant Secretary, Pharmacovigilance and Special Access Branch, Therapeutic Goods Administration
- Dr Ben Whitehead, Paediatric Rheumatologist
- Stuart Knight, General Manager, Roche Products Pty Limited
- Jonathan Smithers, CEO Arthritis Australia
- Franca Marine, Policy and Government Relations Manager, Arthritis Australia
If you or someone you care for uses Actemra, contact your Rheumatologist as soon as possible about your treatment.
Why is there a shortage?
The shortage is due to increased global demand for Actemra for use in people who are severely ill with COVID-19.
Who is affected?
Anyone who is taking tocilizumab is likely to be affected by the shortage. In Australia, tocilizumab is used to treat children and adults with the following conditions:
- rheumatoid arthritis (RA)
- systemic juvenile idiopathic arthritis (sJIA)
- polyarticular juvenile idiopathic arthritis (pJIA)
- giant cell arteritis (GCA)
- cytokine release syndrome (CRS).
How long is the shortage expected to last?
The supply of all tocilizumab products is expected to remain limited until January 2022.
Which products are affected by the shortage?
All tocilizumab products are affected. There is only extremely limited stock of the intravenous (IV) presentations used for infusions. Supply of the pre-filled syringes and ACTPen Autoinjector is limited until January 2022. However existing patients should be able to access one or the other.
What steps are being taken to manage the shortage?
The Therapeutic Goods Administration (TGA) is working with Roche and other stakeholders to manage supply to reduce the impact of the current shortage on those taking tocilizumab. Measures are being taken to preserve stock for children with sJIA and pJIA, and for people with GCA or CRS who have no alternative treatments, and for people who are unable to switch medicines.
What will happen with my treatment?
It is important to talk to your Rheumatologist as soon as possible to discuss managing your treatment during this shortage. If you have sJIA, pJIA or GCA, you should be able to continue on tocilizumab.
If you have RA and are on IV tocilizumab for infusion, your Rheumatologist is likely to prescribe a different medicine for you. Your prescriber may also suggest spacing out your infusions/injections, e.g. from weekly to fortnightly.
What alternative treatments are available?
Alternative biologic treatments are available for people with RA. If you need to switch medicines, your Rheumatologist can advise the best alternative treatment for you.
What if I have already tried 3 or 4 biologics that have not worked for me?
New treatment options have become available in recent times which may be effective. You should discuss options with your Rheumatologist.
What if my pharmacist doesn’t have stock?
If you have a script for the prefilled syringe or the ACTPen, you should contact your pharmacist well before your supply runs out, to order your medication. Your pharmacist should be able to order either the prefilled syringe or the ACTPen. If your pharmacist says they have no stock, ask them to continue to check with their wholesaler directly (rather than through a portal), or to try a different wholesaler.
If you are an adult and use the prefilled syringe or ACTPen autoinjector you might need to swap between these two products. Ask your rheumatologist, GP or rheumatology nurse to show you how to use both types in case you need to swap. Alternatively, contact Roche Medical Information on 1800 233 950 or email@example.com for information on how to use these products.
If I need to change treatment, what will happen if I don’t do as well on the new treatment?
Talk to your Rheumatologist as soon as possible to review your treatment if you are not doing well on the new treatment. It may help to talk to your rheumatology team in advance to develop a flare action plan.
If I don’t do well on the new treatment, will that affect my future eligibility for biologics?
If you do not respond to the new treatment, this will not count as a ‘fail’ unless the alternative treatment continues for longer than 16 weeks.
Will I be able to go back to tocilizumab when supply returns to normal?
You will be able to resume tocilizumab treatment when supply returns to normal.
Will I be able to stay on the new treatment if that works for me?
You will be able continue on the new treatment if it works for you.
For further information and support
- Arthritis Australia: Infoline 1800 011 041 arthritisaustralia.com.au
- Musculoskeletal Australia: Help Line: 1800 263 265 msk.org.au
- CreakyJoints Australia https://creakyjoints.org.au/
- Therapeutic Goods Administration https://www.tga.gov.au/alert/shortages-tocilizumab-actemra-medicines
- Roche Medical Information: 1800 233 950 or firstname.lastname@example.org
- PBS Arrangements for tocilizumab shortage: https://www.pbs.gov.au/info/news/2021/08/pbs-arrangements-for-tocilizumab-shortage and https://www.pbs.gov.au/info/news/2021/08/Pharmacist-Substitution-of-PBS-Medicines