Photo: L-R: Susan Hughes (Dragon Claw); Jo Watson (Deputy Chair, PBAC); and Michelle Clewett (Dragon Claw).

Dragons Susan and Michelle attended the PharmAus23 conference held at Parliament House in Canberra on 6 September. The conference provided an opportunity for industry leaders, patient groups, clinicians and parliamentarians to discuss policy reform to strengthen Australia’s Pharmaceutical Benefits Scheme and improve patient access to new medicines and treatments. Susan and Michelle had the opportunity to speak with pharmaceutical companies, peak health bodies, patient groups and government officials, including a chat with Jo Watson, Deputy Chair of the Pharmaceutical Benefits Advisory Committee (PBAC). Dragon Michelle’s report:

The conference was facilitated by Virginia Haussegger AM and featured three panel discussions:

• Redefining Future Healthcare: panel members shared their experiences with Australia’s healthcare system, from both a patient and clinician perspective. The Chair of Australia’s Pharmaceutical Benefits Advisory Committee spoke about the particular challenge of balancing cost effectiveness and clinical efficacy when assessing whether or not to subsidise new medicines.
• Fostering Equitable Partnerships: Deidre Mackechnie, CEO of the Australian Patient Advocacy Alliance gave a particularly powerful speech about the importance of including patients as equal partners when designing and improving the health technology assessment system.
• Partnering with Government: five federal MPs (four of whom were doctors) spoke about what they needed from industry and patients to inform policy considerations to protect and improve the health of Australians.

The Minister for Health and Aged Care, the Hon. Mark Butler MP and Shadow Minister for Health and Aged Care, Senator Anne Ruston both gave speeches about enhancing Australia’s healthcare system, such as through the current review of health technology assessment policy and methods.

Most importantly, patient stories were featured throughout the day (including from Dragon Claw members) highlighting how access to medicines is helping to manage autoimmune diseases, as well as some of the challenges in accessing effective treatment. Thank you to Dragon Susan, Jackie, Jill and Michelle for putting themselves out there! Michelle’s video has been published online and is available at the following link: https://vimeo.com/858495008/38e8a87a32

Dragons Marlene Ferguson, Linda Gaudet, Charmaine Jones

Alisdair Cook with Charmaine

Charmaine with “Maple” Susan Cook 

Charmaine, Cheryl Zubrack, Linda.

This story could begin with plane tickets purchased to the destination… but that would be too simple. and life is so much richer in the detail! 

The seed of this scheme was planted in the middle of a Canadian winter, as we waited for a flight home that was eventually cancelled due to weather. But that’s another story….

The scheme goes like this: what if we drive our current trailer to BC from Ontario in the fall, sell it, order a new trailer, fly to Australia, camp for a while, present a medical paper at parliament and a conference, have a retreat with fellow dragons, Christmas in Australia with our family, fly back to Canada in the middle of winter and camp in BC in a new warmer trailer till we can drive back across Canada! What could go wrong? And oh yes, we’ll have to pack for 4 seasons and close-up our island home in the 5 days after our last guests leave!

Well, to date, the plan seems supported by the universe.

The drive across Canada was blessed by great weather and picturesque camp grounds.

But the highlights were meeting with fellows Dragons along the way! We even camped in their driveways!

First up in Winnipeg (Manitoba), was our visit with Cheryl, husband Bill and daughter Michelle with partner Allisha. We enjoyed dinner on the deck on a very warm evening. Cheryl shared her artwork and we learned of her upcoming exhibitions! It was great to see where her creative magic happens, and where she is when she’s on our zoom calls.

Next Dragon stop in Canmore (Alberta), we enjoyed a warm welcome on a chilly evening with Susan and Alasdair. Some technical exchange for Dragon Talk support (Alasdair kindly stepped in to cohost while Paul is recharging his health) preceded an evening of a meal and story sharing. A plan hatched for an east coast hike together in 2024.

A day of drenching rain was a relief for BC locals dealing with the devastating wildfires this year… and, also ensured that we would be able to drive through these areas. That day’s drive put us close enough to stop by for a morning coffee the next day with Marlene and husband Bob in Kelowna (BC). In a visit that went by too quickly, we were lucky to experience a snippet of Marlene’s talent with the flute!

After coffee, we completed the epic drive to Chilliwack, BC.
8 days and 4,800km. Phew!

Stage 1 successful.

Now to catch up with our daughter, son in law and three grands, getting Charmaine to Vancouver for an urgent steroid injection to her knee which flared (when she went to generic), emptying and cleaning our trailer, meeting with the purchaser of our trailer (from the USA), seeing our new trailer (which we will pick up in January), sorting a ride to the airport…. all before getting on that plane!

But that’s yet another story!