Newsletter July 2023
Dragon Claw Newsletter 2nd quarter 2023
Encouraging self-care for those with Autoimmune Inflammatory Diseases
Action, action and more action!
Welcome to our second quarterly 2023 newsletter. Lots of action stories are covered and we suggest you make a cuppa, sit back and read over the inspiring activity by our fellow Dragon patients!
The amazing Dragon Jan Frazer, 82 years young, tells us about her 30k walk; Dragon Charmaine writes about the launch of our patient tool, Know Your Numbers; Dragon Jill Berensen represented our charity at the International Conference for Health Technology Assessment; and Dragons Michelle, Jan, Charlotte and Charmaine participated live on line in panels and/or taped presentations on the International Day of Autoimmune and auto inflammatory Arthritis Day.
Michelle writes about the disappointing failure of a proposed new Lupus medication application. Jill and Susan often referred to her frustrating and vulnerable story at the Health Technology Conference, as examples of why patients need to be at the centre of those authorities deciding on new medications.
Also, we experienced lots of wonderful presentations and discussions around self-care by our two weekly Dragon Talks: Our original group meets Tuesday evenings for North America or Wednesday morning for Australians. Our new group meets Monday evenings especially for Australians.
Our Facilitators, Charmaine, Michelle, and Paul have written a summary of these talks and also a list of the next three month’s calendar of events. We take this opportunity to also farewell our fourth facilitator, Functional Nutritionist Charlotte Hill, who is on maternity leave and we all wish her a wonderful time with her new baby, due this week.
Our last story by Dragon Alasdair is a painful subject with a pastoral care that is admirable.
We are very appreciative of the work by our facilitators. Please feel free to spread the word about our talks within your community.
Yours in Self-Care, Editors Susan, Charmaine & Paul.
Dragon Jan, RA Patient, walks for the Heart Foundation
Left: A wave hello by Jan Frazer 30km Coastal walk by Dragon Jan
I am 82. I have Rheumatoid Arthritis. I joined 700 walkers to complete the Coastrek 30k walk on the coast of the Mornington Peninsula in Victoria to raise funds for the Heart Foundation.
It was 8.30 on a wet, cold and windy morning in May when we set off in teams of four for this very well organised event. Wild Women on Top are the organisers of the Coastrek Walks on behalf of the Heart Foundation throughout Australia. Even braver souls chose to complete either the 45k or 60k distance.
Heart disease kills more women in Australia than breast cancer and those of us who are immunocompromised now know that we are more susceptible to a heart event than others in society.
It made me very proud to walk with predominantly women – there were a few men – to raise funds for research into heart disease in women. It did stop raining but it was tough going and even tougher in parts. For instance, a staircase which went on and on with about 500 stairs and a 3k walk along coarse and chewed up sand (remember there were 700 of us) from Sorrento Surf Club to the Portsea Surf Club, the next coastal town. I thought I would never get there.
To cross the finish line soon after 4 was wonderful. We were greeted with shouting, music, lights and bunting. It was so rewarding and so worthwhile to have spent hours working on stairs, ramps and sand to prepare for the walk and then to complete the distance and pull up so well the next day. I loved it.
GIVING PATIENTS CONTROL
Australians Dr. Daniel Lewis , Rheumatologist in Melbourne with Dragon Patient Jan Frazer checking through KYN tool
Canadians Dr. Peter Bell, lead physician at Sharbot Lake Family Health Team. Ontario, and Dragon Patient Charmaine Jones discussing KYN
Together with a Canadian organisation, CAPA (Canadian Arthritis Patient Alliance), Dragon Claw has produced a new tool to help us, people living with autoimmunity.
- learn what the tests are for
- keep track of important parameters
- coordinate our care between multiple providers
- monitor for co-morbidities
This 13-minute video explains the why, how, and what of this new tool: Know Your Numbers.
Download a copy for yourself
What’s happening with Know Your Numbers now?
Linda Wilhelm of CAPA has managed to have Know Your Numbers included in a National newspaper insert for Canadian seniors!
NEW LUPUS DRUG – UNSUCCESSFUL APPLICATION
“It is unrealistic to expect a cookie-cutter assessment for a complex and heterogeneous disease like Systemic Lupus Erythematosus (SLE)
By Dragon Michelle
The Pharmaceutical Benefits Advisory Committee (PBAC) has twice considered Saphnelo for listing on the Pharmaceutical Benefits Scheme (PBS). Each time it acknowledged the clinical benefits of Saphnelo, compared to current SLE treatments, and improvement in disease activity for some SLE patients. But it felt that the magnitude of benefit was modest and uncertain. Whilst acknowledging that the uncertainty was likely impacted by patient heterogeneity and the complex and variable nature of SLE, PBAC nevertheless asked Astra Zeneca for a simpler more robust economic model. However, it is unrealistic to expect a simple and more robust economic model for a complex and heterogeneous disease like SLE which affects an estimated 1 in 1,000 Australians. There is hope for change with the review of Health Technology Assessment (HTA) policy and methods.
This kind of cookie-cutter assessment based on broad population outcomes does not adequately allow for consideration of more targeted and effective medicine which may ultimately offer a better return on investment than continuing to subsidise the use of cheaper, less effective medicines developed to treat other conditions.
As it stands, to be listed on the PBS, the impact of medicines must be certain, far reaching, and cost effective. Demonstrating this is entirely achievable for common diseases which develop and manifest in a typical manner, such as high blood pressure, diabetes, or asthma. But with less common, heterogeneous, and complex conditions it becomes more difficult to demonstrate the clinical effectiveness of medicines (particularly when patients with the same condition respond differently) and the cost effectiveness of medicines (particularly when comparably few people might be taking them, and/or the medicines are very expensive). The assessment process needs to be updated so that PBAC can make a realistically informed and holistic assessment of the economic costs and benefits of funding medicines for diseases, despite their complexity and heterogeneity, that reflects current scientific knowledge and harnesses what modern medicine has to offer.
Happily, the HTA policy and methods - including those for assessing medicines for inclusion on the PBS, are currently being reviewed to try and keep pace with health technology advances and minimise barriers to access. It is the first deep systemic review in 30 years and is due for completion by the end of 2023. Let us hope that it results in recognition of targeted medicines for complex conditions as more cost effective than subsidising multiple ‘one-size-fits-all’ treatments that do not address the root cause.
Dragon patients attend the 21st Health Technology Assessment International (HTAi) Conference
l-r HTIa Conference Clinical Dragon Delegate Jill Berensen with Anne Single, Chair, Patient & Citizen Involvement in HTA Interest Group; Steering Committee Member, Patient Voice Initiative, and newly appointed VP of HTAi. Susan Hughes, Chair of Dragon Claw’s Patient Advisory Committee.
This conference was held in Adelaide where approx. 700 delegates from around the world attended over 5 days to collaborate on learning and sharing to improve the HTA processes. An encouraging inclusion at this conference was the participation of 70 Patient representatives, including our delegate Dragon Jill Berensen (retired nurse of 40 years) , with the support of Dragon Director Susan Hughes. What is HTAi? Jill’s feedback?
Our volunteer Jill also kindly attended pre-conference workshops covering Patient/Citizen involvement in HTA; ”Why and “How” to Assess the impacts of HTA, and The Newcomer’s Guide to HTA.
After a much earned rest by attending 5 days of intense learning, Jill will brief us a summary of lessons in our next newsletter. However, her take-home comments are “It has been a real eye opener to learn how far our patients have to go to have a voice in the decision-making process of our health sector. “ she said.
“Equally interesting was the global perspective and the great collaboration between likeminded groups. Looking ahead, Health Technology Assessment International now has wonderful Ann Single as Vice Chair, so is in the best of hands, going forward. Without PVI and Anne’s kindly offered grant, I would not have enjoyed this exhilarating conference” said Jill.
Out and About at the HTAi Conference
Dragon Susan had the opportunity of developing new stakeholder relationships with Industry representatives, securing a guest speaker for Dragon Talks, being interviewed by leading health organisations and catching up with our sponsors. Susan said, “we also took the opportunity to promote our Know Your Numbers tool, seeking support to digitalize this important Patient resource.”
RAISING AWARENESS EVENT
DRAGON TALKS - Overview
Dragon Talks is a weekly online meeting now boasting two groups with different time slots. Dragon Talk 1 continues on Tuesday evenings for North Americans, Wednesday mornings for Australians. Dragon Talk 2 meets Monday evenings, Australian time. Our meetings are educational, informative, and supportive. Please know that you will be welcome to join either or both groups.
The following is a brief overview of recent Dragon Talk 1 meetings.
Our Dragon Talks have continued with very interesting content, clear teaching techniques, and much personal interest. We welcome as our presenters those who are knowledgeable in a particular topic, both our own members, and guest speakers. We are always open to suggestions from our members, either for a general topic, or a particular speaker to address a topic. Please share your ideas with Charmaine and Paul.
In these past three months we have continued and completed our review of one of our pillars, Mindfulness Movement, expertly led by our own Jill Dunkley.
We have heard from an individual and a couple who live with Multiple Sclerosis. We were inspired by these accounts of active and engaged living.
We had a stimulating presentation on Precision Medicine, which gave us much to think about.
We have been encouraged to “upgrade our pantry” by Functional Nutritionist Charlotte.
We have been introduced to the benefits of journaling by Dragons Cheryl and Michelle.
We have taken time to reflect on the importance of meditation for improved health, and we have taken time to just be together for visiting, and mutual support.
Please consider joining us for any or all of our weekly Dragon Talk meetings. Contact Charmaine or Paul for an invitation to Dragon Talk 1 (Tuesday evenings North American time; Wednesday mornings Australian time).
Paul Kett, PAC Member, Co-facilitator of Dragon Talk
Dragon Talks 1 Maples, Aussies, Americans and other English speaking countries
Tuesday Evenings Canada and Wednesday mornings Aust. 10.00am
schedule of Dragon Talks 1 July – Sept 2023
What a great line-up of guest speakers! Please plan to join us to show our appreciation
|July 4/5:||Vulnerability hangover part 1 presented by Michelle|
|July 11/12:||Vulnerability hangover part 2|
|July 18/19:||Organic- is it worth it? we welcome back Robin Mallery of Kitchen zen|
|Aug 8/9:||Falling Into Place: a photographic journal of MS by guest Patricia Lay-Dorsey|
|Aug 15/16:||Fatigue/Brain Fog by guest Eileen of blog ChronicEileen|
|Aug 22/23:||AutoImmune Strong program by guest Andrea Wool|
|Sept 5/6:||Indigenous Video work by Terry|
|Sept 12/13:||All About our Eyes by guest ophthalmologist Dr Darryl Lewis|
|Sept 19/20:||The benefit of Tai Chi by guests J Pariselli and J Lintaman|
Dragon Talks 2 Aussies 7pm Mondays
Summary of DT2 topics for the last 3 months
|24/4/23||Decluttering (part 2): Living more intentionally||We explored the concept of living more intentionally, and deciding what we value in life in order to let go of things that don’t matter. This was the second in a series of talks about surrounding ourselves with with things, people, and activities that keep us well.|
|1/5/23||Sleep||Achieving adequate quantity and quality of sleep is critical for our overall wellbeing, particularly when we have an autoimmune inflammatory condition. And yet sleep is one of the least understood aspect of our lives. Dragon Janita presented a review of neuroscientist Matthew Walker’s book Why We Sleep: Unlocking the Power of Sleep and Dreams, including practices to help achieve good quality sleep to support our wellbeing.|
|8/5/23||Genetic Testing||Functional Nutritionist, Deb Grimes, talked about the power of genetic testing. Deb shared her own journey with Ankylosing Spondylitis and how understanding your genetic blueprint, alongside managing the body's environment, can support the management of autoimmune condition(s).|
|15/5/23||Hot drink hour||An opportunity to catch up as a community, share and support each other.|
|22/5/23||How & why to reduce your toxic load||Dragon Charlotte explained how environmental toxins can drive dysregulation in our bodies, and provided options to upgrade common household items to reduce our toxic load to support better health. For example, switching from teflon to cast iron cookware, or from plastic to glass food storage containers, and more.|
|29/5/23||Jan’s Coast Trek for heart health||Dragon Jan shared her experience completing a 30km trek along the Mornington Peninsula to raise money for the Heart Foundation, including how she managed her Rheumatoid Arthritis to complete the challenge. Jan’s trek helped to raise money for research into cardiovascular disease, which can be an increased risk for people with some autoimmune conditions.|
|5/6/23||Know Your Numbers||We discussed Dragon Claw's new 'Know Your Numbers' patient resource. 'Know Your Numbers' helps to demystify some of those codes we see on our blood tests and other health assessments, and make sure we are tracking other indicators for health problems that people with autoimmune inflammatory conditions can be susceptible to, so that we can work in partnership with our health care team to ensure the best possible health. The 'Know Your Numbers' resource is available on the Dragon Claw website: www.dragonclaw.net|
|19/6/23||Hot drink hour||A very special ‘hot drink hour’ where members paid tribute to Co-Facilitator and Functional Nutritionist, Charlotte, for her volunteer work with Dragon Claw.|
|26/6/23||Tai Chi for Arthritis||Physiotherapist Hillary Simon joined us to talk about exercise for people with arthritic joints and chronic musculoskeletal conditions, and guide us through some tai chi movements and postures. Studies show that tai chi can help to reduce pain and stiffness felt by people with arthritis and other joint issues.|
Dragon Talks 2 – Timetable for July – September, 2023.
Enquiries please contact
|3/7/23||Build better habits||One of our Dragons will provide a review of Atomic Habits by James Clear, including tips on how to break bad habits, and build better habits to support our health and wellbeing.|
|17/7/23||Patient Partners||Two of our Dragons will provide an overview of their work with the 'Patient Partners’ program.|
|24/7/23||Hot drink hour||An opportunity to catch up as a community, share and support each other.|
|31/7/23||Sound healing||Meditation is practiced by many Dragons as a way to achieve relaxation and calm. But meditation can be difficult for some, especially those with a busy mind! Sound healing is a form of meditation, guided by numerous calming sounds with various frequencies and vibrations. Brooke Zotti from ‘Sounds Like You’ will take us on a sound journey, and discuss its application as a meditative self-care practice to achieve deep relaxation.|
|7/8/23||Hashimotos Disease||Hashimoto’s disease is an autoimmune condition where immune system cells attack the thyroid gland, resulting in inflammation and destruction of thyroid tissue which reduces the thyroid’s ability to make hormones. One of our Dragons will share their experience with Hashimoto’s disease and their personal strategies for managing it.|
|14/8/23||Creativity as self-care||Several studies have shown that creative hobbies, such as art, writing, and music can help reduce and even prevent stress, express or manage our emotions in a positive and productive way, and reduce feelings of anxiety and depression. Join us for a discussion about harnessing creativity to support our wellbeing.|
|21/8/23||Diabetes - Type 1||One of our Dragons will share their experience with Type 1 diabetes, which is an autoimmune condition where the body’s immune system destroys the beta cells in the pancreas which produce insulin.|
|28/8/23||Hot drink hour||An opportunity to catch up as a community, share and support each other.|
|4/9/23||Decluttering - Part 3||We will look at different strategies for physical decluttering, including decision making tools, and responsible donation or disposal of items. This will be the third in a series of talks about surrounding ourselves with things, people and activities that keep us well.|
Your Partner’s Support Corner.
Please share with anyone with an autoimmune condition who might benefit from a safe space to share and learn. Weekly Australia Wed 10am Canada Tues 6pm evening Enquiries for zoom link
Or Weekly Mondays 7pm Australia (Eastern Standard Time)
If you have any questions you would like us to research and publish, anonymously if you prefer, email our Dragon Talk’s Dr. Charmaine
National Help Lines with Muscular Skeletal Org, Arthritis Australia and Chrohn’s and Colitis Aust.
Our friends at Musculoskeletal Australia (MSK) provide a contact free national Help Line! Do you have questions aboutdealingwithpain, yourmusculoskeletalcondition/s, treatment options, COVID-19, or accessing services? Then be sure to call their nurses on their free Help Line. They’re available weekdays between 9am-5pm on 1800 263 265.
Call the toll-free national Arthritis Infoline on 1800 011 041 for information about arthritis and other musculoskeletal conditions including self-management, community programs, seminars, support groups, and other resources. The Arthritis Infoline is staffed by health professionals and specially trained volunteers in your state or territory who can answer most questions about living with arthritis.
For our 100,000 friends with Crohns and Colitis Disease – crohnsandcolitis.org.au, National helpline 1800 138 029 Canadian links: https://arthritis.ca/support-education/support-resources/arthritis-lin
Canadian Arthritis Patient Alliance CAPA https://arthritispatient.ca