World Lupus Day with the PM
Barbara Ward the CEO of Lupus Association of NSW met the Prime Minister Scott Morrison at West Ryde today and discussed with him World Lupus Day and the new drug Anifrolumab.
This drug is now available in Australia but has not as yet been accepted by the PBS. See the information opposite so that you can help this to happen.
Please join us in the observance of World Lupus Day
VIDEO: Second targeted drug approved to treat lupus patients in 60 years – See News article from ABC Melbourne
Celebrate World Lupus Day
The World Lupus Federation invites everyone around the world to participate in the annual observance of World Lupus Day on 10th May.
A global health problem, lupus affects people of all nationalities, races, ethnicity, gender and age. Lupus can affect any part of the body in any way at any time, often with unpredictable and life-changing results. While lupus knows no boundaries, knowing all you can about lupus can help control its impact.
Did you know an estimated 5 million people worldwide have some form of lupus?
Lupus Association of NSW has played a role in uniting with other lupus groups across the world.
Help us celebrate World Lupus Day by making a donation so we can continue to support the global lupus community – we are in this fight together!
- Make a donation: Make a gift today in honor of a loved one, or someone special to you and support global efforts to end lupus.
- Raise Funds on Facebook: Start a Facebook fundraiser and invite your friends and family to help raise money for World Lupus Day.
- Spread Awareness: World Lupus Day is all about educating others about lupus.
To take part in the global effort to raise awareness and critical funding for lupus research and programs please use the following link to the World Lupus Day website.
URGENT LUPUS MEDICATION PBAC
Public consultation closing May 25
As you may be aware Saphnelo® (anifrolumab) has been granted approval by the Therapeutic Goods Administration systemic lupus erythematosus (SLE) and it has been registered on the Australian Register of Therapeutic Goods (ARTG) this week.
This is huge news and an ABC story is being developed concerning this medication and Lupus as a whole.
The approval by the Therapeutic Goods Administration is indicated as add on treatment for adult patients with moderate to severe, active systemic lupus erythematosus (SLE), despite standard therapy.
The next step is to ensure access to this medication through the Pharmaceutical Benefits Scheme (PBS) and public submissions are now open and close on the 25th May 2022.
Can I urge you to please submit your comments on this matter as the PBAC welcomes input from patients, carers, health professionals, consumer groups or organisations and members of the public on medicines submitted for PBAC consideration.
The PBAC considers these public consultation inputs when considering the clinical and economic evidence presented by the applicant.
Could you also circulate as widely as possible to anyone else affected by lupus – if there is no public push, the PBS will see this as a major negative despite our best efforts
The form can be done online at:
For further details go to Global Survey of People Living with Lupus
You’re the reason we’re here—with information, understanding, and support that may help you live better with lupus.
Some quick links to help you
What is lupus?
Risk factors for developing lupus
The triggers for lupus are poorly understood. Some factors that are associated with developing lupus are:
- Being female: 90 per cent of Australians with lupus are women.
- Early adulthood: most cases of lupus are detected in people aged between 15 and 40.
- Genetic susceptibility: lupus is more prevalent in some families and some racial groups. Lupus is more prevalent and more severe in Aboriginal Australians than in the wider Australian population.
- Sunlight exposure can be a trigger in susceptible people.
1 in 1,000
Lupus is estimated to affect more than 25,000 (1 in 1,000) people in Australia
Onset usually occurs between 15 and 45 years
90% of those affected are women
Coping and support
If you have lupus, you’re likely to have a range of painful feelings about your condition, from fear to extreme frustration. The challenges of living with lupus increase your risk of depression and related mental health problems, such as anxiety, stress and low self-esteem. Stress is a reaction to a situation where a person feels threatened or anxious. Learning healthy ways to cope and getting the right care and support can help reduce stressful feelings and symptoms.
To help you cope with lupus, try to:
Learn all you can about lupus. Write down any questions you have about lupus as they occur to you so that you can ask them at your next appointment. Ask your doctor or nurse for reputable sources of further information. The more you know about lupus, the more confident you’ll feel in your treatment choices.
Gather support among your friends and family. Talk about lupus with your friends and family and explain ways they can help out when you’re having flares. Lupus can be frustrating for your loved ones because they usually can’t see it, and you may not appear sick. Family and friends can’t tell if you’re having a good day or a bad day unless you tell them. Be open about what you’re feeling so that your loved ones know what to expect.
Take time for yourself. Cope with stress in your life by taking time for yourself. Use that time to read, meditate, listen to music or write in a journal. Find activities that calm and renew you. Self care is important, lots of sleep up to 12 hours and try not to stress keep your mind occupied.
Raise Awareness and Funds
Please follow this link to see the latest events:
Lupus Fundraising BBQ
Lemonade for Lupus
Fundraise Your Way
Plan your own fundraising event and make your mark on the lupus community.
Lupus Australia welcomes and encourages the support of individuals and companies who wish to support our mission through their own fundraising initiatives. Your fundraising event should support or enhance the image of Lupus Australia and provide an opportunity for positive exposure and increased public awareness of Lupus Australia while raising funds for those living with lupus.
For more information please email us at firstname.lastname@example.org
Together We Can Make A Difference!
The Lupus Association of NSW site is for informational purposes only and should not be a substitute for professional medical advice, examination, diagnosis or treatment. However, do not delay seeking or disregard medical advice based on information on this site. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. Medical information changes rapidly and while the Lupus Association of NSW make efforts to continually update the content on the site, some information may be out of date.