RISING SUN MEET 2014 – PENANG (26TH TO 28TH JUNE 2014)

RISING SUN MEET 2014

 
 
Be
it the FIFA World Cup of Football in Brazil, or the All England Lawn Tennis
Championships at Wimbledon, or Australia meeting England in a Test match at the
Lords, when the best meet the best, it is always a pleasure to be present as an
observer. The Rising Sun Meet 2014 at Penang was no different.
In the meeting, conducted annually at different
locations, advocates and leaders of CML patient groups across the Asia Pacific
Region come together to share and learn from each other.
Max – Asia Pacific Team
This
year, at Penang, Malaysia, the best of the best in CML care were all there,
along with advocates
from Bangladesh, Cambodia, China, Hong Kong, India, Indonesia, Japan, Korea,
Malaysia, Nepal, New Zealand, Pakistan, Philippines, Singapore, Sri Lanka,
Taiwan, Thailand and Vietnam.
My goal was to learn through
participation as an observer, through backroom discussions and informal interactions with participants
and other observers and through observation of various methods in use such as
poster display, presentations, and panel discussions.
 
Wirat (Thailand) and Nelia (Philippines), my Asia Pacific colleagues were with me as observers too.
 
Wirat & Nelia with Fan in the background
A sub goal was to meet patient leaders
from Sri Lanka and Bangladesh on the side-lines of the meet and do some
planning with them.
 
Sohag – Patient group leader from Bangladesh

 
Dr Manura ( patient group leader from Sri Lanka), Pramod and Sunder (Friends of Max India)
 The meet gave
me an opportunity to understand and learn about the latest developments in the
treatment access of CML. The medical
sessions were packed with latest updates on treatment access, with topics such
as i) transplant in
CML – chances of cure , ii) risk and economy-cure or control, iii) living with
and managing the ‘side effects of drugs’, and iv) about generics & TKIs-
importance of monitoring the disease.
 
Other areas covered by the meet included
an Advocacy workshop – On the best practices followed by different
countries,  as well as sessions
/presentations by speakers on topics such as i) fundraising channels, ii) use
of social media in sharing and networking, and iii) understanding one’s goals –
why we set goals.

But first, let me begin at the beginning.
 
Beautiful
Penang
The
beautiful city of Penang !
On
landing at the Penang International Airport, what impressed me the most was
that this city looked almost like Kochi (India), the place where I come from –
the sea, the greenery, the tiled houses and the cloudy weather; exception being
the much cleaner roads?  Mei Ching! How
do you guys manage it?

The
first day was free and I joined my colleagues for a day out as we got invited
for a scrumptious dinner by the steering committee. The food on offer to vegetarians
like me was curious, to say the least. Shockers such as Vegetable Lamb kept us
on our toes. Seeing our alarm, the chef came over personally to enlighten us
about the nomenclature, and to reassure us that the lamb was nothing but a
vegetable substitute for the real thing. Then we learned to enjoy the variety,
rather than quibble at the strange names.
We
decided to walk back to the hotel with the help of the GPS on our phones. The
GPS directed us in the drive mode, and we ended up taking a roundabout route,
which in turn saw to it that we digested our food well before time.

 
Day 1
Starting with
an informal session by Pat – explaining what CML is and providing an overview
on BCL-ABL, efficacy, drug resistance and first line/second line treatment, the
day was filled with Dr David’s Ross’s highly informative session on first line
treatment options with newer TKIs and the session by Kristofer Rogers on
fundraising, which was lively and interesting.
Dinner was served between 6.30 and 8 PM, early by
Indian standards, but not before we went out to explore the lanes and by-lanes
of lovely Penang.
 
Pat speaking about CML
Remembering Prof Goldman
A selfie by Krishtofer Rogers
Day2
The second
day started with a medical session by Dr Eri Matsuki on living with and
managing the side effects of drugs. This session showed us how quality of life,
along with side effect management, is important in maintaining adherence to
treatment. The take home message: Most side effects are manageable, they appear
early in treatment and it is important to discuss with one’s physician which
drug elicits the optimal response and what are the best side effect managing
strategies.
Dr Eri Matsuki

This was followed by a session on generics by Dr Hari Menon, wherein he
stressed that generics have come of age and many of them are quite efficacious,
though TKIs are a step ahead and out of the reach of generics at present.
 
DR Hari Menon on Generics
 
Dr David Ross, Dr Chang Kian Meng, Dr Hari Menon,
Dr Eri Matsuki and Pat were on the panel for discussion on: Stop treatment:
Cure or control?
Dr
Chang’s talk on Transplant in CML – chances of cure, risk factors and economy
was very informative
·        
He informed us
that this is the only hope for cure in many cases
·        
He also spoke
about Haploidentical transplant – which is relatively new in the region
·        
Dr Chang pointed
out that it is a choice one has to make whether to go in for first line therapy
drug treatment or is it better to go for stem cell transplant
·        
He also discussed
choosing the right subject to transplant – risk for TKI, local factors like
country drug access, and patient factors, which all play an important role.
·        
One question that caught my attention was – “If the stem cell transplant fails, can the
patient restart on TKI?” Answer: After monitoring the patient continuously,
they can be put back on TKI.
 
Pat, Dr Chang Kian Meng, Dr David Ross
Victor Loh’s session on why we use social media
– for Sharing, Creating awareness, enlisting/ mobilizing support, Funding,
Promotion, and Branding.
·        
He showed us how
to create a page on Facebook
·        
Page is for you to
advocate
·        
Group is to
communicate
 
Day3
 
The last day
started pretty early, at 8 AM, so it could be wound up by 2.30 PM.
The day was
allotted for patient advocates assembled there to make their presentation on
the activities in their countries.
June babies
celebrated their birthdays in common by cutting a huge cake
The closing
ceremony was simple, yet impressive.
Dr Manura making his presentation

Pramod John

 
Post the
Rising Sun meet, our creator of Maximo, Savian Fan, took us through a very
absorbing session on branding and the need to understand the
reasons that we are focusing on branding now and to understand its value to the
organization –   explained about our
branding process when the team needs to make a special material or publication.
 
Learnings
Apart from the wealth of information and experience one could
gather from the sessions mentioned above, the most important lesson of the
Rising Sun Meet 2014 at Penang lay in its organization and conduct. Hats off to
Mei Ching, Viji and the rest of the team; the entire programme went without a
hitch. Not a single aspect was out of place, and everyone who came, be it a
participant or an observer, had some take-away from the sessions. There was no
scramble, no last minute alteration; it all went so serenely.
 
In this context, a quote from Lao Tzu, on leadership, comes to
mind: 
“The best of them all, when he has finished, people will say- It
all happened naturally”. 
 
Gratitude
If not for the constant support and belief of The Max Foundation
and Pat and Viji, I would not have had the opportunity to share in this
wonderful experience that was Rising Sun 2014. A big hug and thank you from the
bottom of my heart!
 
A few more pictures : 

 

A delightful session

 

The awesome group

Posters

Posters

Dr Hari Menon with me

 

The mug auction – Mei Ching won !

Fan – The creator of Maximo and the author of Maximo and the Big C , Viji

 
 
Beena

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