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
In collaboration across the miles, brings a new tool for us!
By Dragon Charmaine

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.  

https://vimeo.com/manage/videos/825638997

 Download a copy for yourself

Lupus

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 21^st 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.” 

Left, Panel Moderator Dr. Norman Swan ABC Radio & TV challenged HTAi international leaders with (top right) Aust. Patient Rep, Jessica Bean Chair of  Patient Voice Initiative. She stressed the importance of having patient representation from the start of the HTA lifecycle.	L-R Dragon sponsor Pfizer’s Emma Andrews, Global Vice President of Patient Advocacy in New York with Dragon Susan Hughes. Emma said “A patient assured me that patients don’t need a seat at the table, they are the table!”	Jo Watson, Deputy Chair of Aust’s Pharmaceutical Benefits Advisory Committee and Consumer Nominee said “I don’t think there has been a better time for understanding our patient voices are now driving a lot of change and the partnerships. are being redefined and is a really exciting development. I think patients are going to drive policy reform and we are going to see things just improve more and more.”

RAISING AWARENESS EVENT
Yes we were on the world’s stage!
By Dragon Charmaine

A big thank you for all who contributed. We were well represented by : 

Dragons Michelle Clewett and Jan Frazer who participated on the panel with topic of “Communication with your Doctor” 

Dragon Charlotte Hill whose video was on a process for reviewing your progress on our Five Pillars of Health, was played. 

Dragon Dr. (Ret.) Charmaine Jones (with Linda Wilhelm, CAPA) who presented after the showing of the Know Your Numbers video!  

Wow…what a team.  

I believe we will receive video clips of our presentations - we will be able to share with you.  Stay tuned. 

DRAGON TALKS  - Overview

Dragon Talks. 

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). This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it.

Contact This email address is being protected from spambots. You need JavaScript enabled to view it. for an invitation to Dragon Talk 2 (Monday evenings 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 

Dragon Talks 2 Aussies 7pm Mondays 

Summary of DT2 topics for the last 3 months 

Dragon Talks 2 – Timetable for July – September, 2023.  

Enquiries please contact This email address is being protected from spambots. You need JavaScript enabled to view it.

Your Partner’s Support Corner.
By Dragon Alasdair Cook

Dragons “Maple Susan” Cook, MS patient with husband and Carer, Alasdair Cook 

How do you plant flags of hope in the future for you and your partner, when the future looks to be full of pain and suffering, and potentially very short?

I was asked this question recently by a dear friend of mine who is looking after his partner who has advanced ALS, Lou Gehrig’s Disease. Through sign language she has let him know that she wants to spend the winter in Thailand again, and avoid the long Canadian winter here. Her specialist has told him that it is highly unlikely that she will make it to autumn, and so being practical he was on the point of saying that it was unlikely, when he paused and decided to give me a call for advice. 

My advice to him was to listen carefully to what she wants to do and when she wants to do it, and not just for this particular request. Our partners have very different ways of communicating their needs, as we discussed before, and carefully listening is key to keeping hope alive. 

I suggested that he start openly planning the winter trip to Thailand with her, all the while ensuring that he and his travel agent were building in some steps where he could cancel the plans without penalties if she is unable to sustain life. In the best case, the hope of the trip gives her strength and enriches her life and they manage to go to Thailand, in the worst case she may eventually realise that it will be too difficult for them as her health fails even more and she changes her mind about going. 

Sad days indeed, and I apologise for bringing up such a dark subject, however, this incident has certainly shown me that we must all keep hope alive, and by careful listening we can ensure that our partner’s short or longer term wishes, whether they be “bucket list” items or final long distance travels to see siblings and relatives, we must do all we can practically and safely to make them come true. In the meantime, keep listening and then smiling, and striding into the future, all the while planting some flags of hope. 

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 This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it.

Or Weekly Mondays 7pm Australia (Eastern Standard Time) This email address is being protected from spambots. You need JavaScript enabled to view it.

If you have any questions you would like us to research and publish, anonymously if you prefer, email our Dragon Talk’s Dr. Charmaine This email address is being protected from spambots. You need JavaScript enabled to view it. .  

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.   

Here is MsK’s newsletter MSK News

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

 Gutsy Support - Gutsy Peer Support - Crohn’sand Colitis Canada

crohnsandcolitis.ca 

Medical Disclaimer
While all information in our newsletter  has been researched, reviewed and presented with all due care, the content is provided for general education and information only.Information here is not intended to replace medical advice from a health professional and Dragon Claw does not accept any liability for any error or omission, injury, expense, loss or damage incurred by you or another party as a result of you using or relying on any information contained in our newsletter, on our website or any linked website. All users are urged to seek advice from a qualified health care professional for diagnosis and answers to their medical questions.