GIST HORIZONS 2016

Last
month I attended the GIST Horizons Meet in Spain representing The Max
Foundation. Accompanying me was Nikhil Guhagarkar who was invited to represent
Friends of Max .
This
was my first GIST Horizons Meet in the sense , the first time I attended one of
these meetings after the segregation of CML and GIST from the old New Horizons
format . It was a great opportunity to meet and interact with many GIST advocates from the other party of the world and share practices with them. Equally important was meeting and listening to the presentations of physicians who were experts in treating and managing GIST .

I
was asked to present a Special Lecture on our work with GIST in the region and I
am happy to say my 45 minute talk was well received.
I
have tried here to put it down so I can share it with all of you.
I
did have a few slides but most of the presentation was like a talk based on our
experiences.
  
GIST
is a rare disease. Try saying that to someone who is facing a diagnosis of GIST.
Rare
is the word furthest from his or her mind. 
And
what does the word RARE actually mean? 
Unusual
Uncommon 
That which is not found in
large numbers and so of

special interest or value. Precious
/ Special
What makes a cancer rare. 
I
was in conversation with one of our oncologists in Kolkota and we began talking
of how and why some cancers were considered rare but I said we did have a
considerable number of patients diagnosed with these very cancers…
What
he said next made a great impression on my mind. He said, given the paucity of
diagnostic tools and treatment facilities and why, even more importantly,
proven treatment, these malignancies were not even diagnosed. 
If
there is no treatment then no effort is made to diagnose the disease he said. But
if there is then all efforts are made to do so. 
It
is only with the advent of the Magic Bullet then and especially because of the
assistance programme that brought it to hundreds of patients at no cost that
the two rare cancers, GIST and CML surfaced at all.  Till then, even if
they were diagnosed there was no control, let alone cure and only certain end
of life.
Harsh
as it may seem, given the typical scenario of scarcity of resources in low
income countries, this is the truth.
So
to go back to how GIST came under the scanner in this part of the world, it was
GIPAP and till date we have had close to 2000 patients registered only with us. 
So
let me tell you a story…
We
are all on this journey of life: birth to end of life.
With
our family, friends, neighbours, colleagues….. 
We
know of our final destination. Does it alarm us? That it is end of life? 
No.
Just the fact that we are all in it together and the journey itself is so full
of productive days spent in the company of loved ones helps in keeping morbid
thoughts of death away. We know it is somewhere out there but it doesn’t
interrupt our life.
Then,
for some of us, comes an unpleasant shock. Life interrupted. And tracks changed.
Forced to get off at some strange Station. Or washed ashore on a strange land .
Called Cancer.
GIST
Sarcoma Leukaemia …whatever but Cancer.
In
countries in this region where the journey of life is conducted in the midst of
community , within the community and for and by the community , in families that
number in dozens , friends and neighbours who are as much or even more than
family , being asked to leave the caravan of life is a fate even worse than
death . 
And
what awaits one there is isolation, fear, denial, anger, desperation and
depression . 
And
what looms above you is the daunting task of the Rebuilding of life as you knew
it but in altered circumstances.
And
then another person gets off at the same station and there is company. You are
wary at first but then it is after all company. Then one more and then another
and then you realise that this here is your new family. Your new friends, your
new co-workers in another world which is becoming more real than the one you
were asked to step out of. 
And
then the realisation hits you that life was not interrupted. The journey continues.
The destination is still a while away. Only your tracks have changed. Your co
passengers have changed.  

And a support group is born. And a ‘ New Normal ‘ the goal.
Factoring the life altering changes into it. 
Friends
of Max was formed just like this. A motley group of people, from all walks of
life having to learn to live with a chronic condition, with dignity and hope.
 
The
labelled indications of the drug and the PAP put in place by Novartis made
strange bedfellows of CML and GIST patients. Yoked together even though their
disease determined different paths for them. 
However
, for the few hundreds of GIST patients and their families lost in the
thousands of CML patients,  it was navigating those very different paths
together that created an environment for seeking answers to questions still
unformed , still unrecognised , still unacknowledged . 
GIST
was not CML. 
GIST
patients’ needs were different.
GIST
needed the attention of specialised physicians.
There
was still much unknown about GIST.
GIST
was a more difficult disease to bear physically.
GIST
patients were dying.
And
here were the road blocks that were being recognised and identified as
challenges. 
No Access to correct Information.
No Access to GIST Specialist Doctors.
 Poor Compliance in taking the drug.
Language barrier
Myths associated with Cancer.
Insurance hurdles
Difficulty in procuring second generation drugs 
What was needed to overcome these were: 

Disease Information 
Support Group Meetings 
Exposure to international peers
Workshops 
Access programmes

The biggest and most pressing challenge of course was to find amongst
this group of people those who were willing to stand up and speak for
themselves and lead the way for those whose voices could not be heard. Lack of education,
crippling stigma, fear and poverty, belief in myths all stood in the way. 
This is when at Max we decided to step in and do something specifically
for the GIST patients. 
With encouragement and assurance that a safe platform would be provided
for them. Slowly but surely, patient leaders emerged, eager to learn and share
. Physicians we worked with welcomed this move and committed their time and
resources to our Project GIST Focus.

Besides any other challenge we may face, the most immediate one is that
of the vastness and diversity of this land, this region. I have always
thought how India is like the European Union . Our 29 odd states like the
different countries that make up the EU . The language we speak, the food we
eat and the clothes we wear, all are different from each other .
Region specific differences in language and other socio cultural
factors only increase the distance in many other ways. 
It is impossible for all the patients to come to one treatment centre. They
find it well-nigh impossible as it is to get to a Centre in their own region as
it is miles away from their town or village. 
If we had to reach out to the patients we had to go to where they were
And so we did. 
In the past two years, working with the physicians in the different
hospitals in the major centres in the country, we have been arranging support
group meetings especially for GIST patients and their caregivers. 
For the first time, patients and physicians too, have been given a
platform where they can interact with each other face to face in a safe and
secure space. 
Over 12 meetings held in the last 2 years and over 240 Pts in 6
cities 
Many kinds of barriers are broken and bonds formed in these gatherings. 
The Max Foundation and its support group arm, the Friends of Max has by
now been recognised and accepted as the go to unit for any issues the group may
have to contend with. 
By both the patients and the physicians. 
Besides disease information booklets in the form of FAQ and nutrition guides,
created especially for the group by physicians and patient leaders and
translated into different languages and distributed   , the Q & A
sessions with the medical experts conducted during these meetings are of great
value to the participants. In a non-threatening and friendly environment, with
enough time on hand, patients and families have the opportunity to ask as many
questions as they want to and clear their doubts. The physicians spend quality
time with the patients and field their queries with patience and compassion.
Together we Share and Learn – The Patient Testimonial 

These meetings offer the perfect platform to put this into effective action.
There is no greater comfort to be found than in the telling of your
story and in the company of peers, this provides great comfort . 
 
Patient Workshops 
Interactive workshops are conducted during these meetings which
contribute to better understanding and improved compliance and good adherence
behaviours. Art and Drama Therapy sessions are popular. They help break the ice
and provide avenues for self-expression. Compliance and Volunteer Training
workshops are also appreciated and help in consolidating the various skills and
strengths of the group members.
Going beyond boundaries.
The Max Foundation has also encouraged and supported FOM to be represented
by its patient leaders and advocates at all International meetings and
conferences. With a fledgling group formed for GIST, it was important to ensure
that their voice too could be heard in the international GIST community.
And this exposure to international developments in the management of
GIST fills the vacuum felt deeply: that of not having access to information on
the latest developments in the international arena of treatment and management
of GIST. 
We are also encouraging everyone, no matter how deep in the interiors
or how small the town or village to embrace technology and be part of this
movement virtually. Smart phones are becoming accessible , if not to all then
at least to quite a few and Whatsapp Groups are an amazing way to be in touch .
FOM is working on utilising the simple SMS text messaging facility too , to
send alerts and reminders to all the patients . 

The Website is another tool and this is a means of showcasing our
activities to the GIST community world wide and share and learn on another
level .
It is with great enthusiasm and positive energy that our patients and
volunteers take part now in the annual GIST Awareness Day celebrations. It
brings to them a great sense of belonging to a vibrant and forward looking
community of strong and informed peers. Those abandoned at that lonely
train station called Cancer are well on their way to their destination on a
parallel track with new family of friends and supporters.
All our patient related activities are supported by Max and FOM’s
initiative Chai for Cancer, a unique awareness and fund raising venture to
garner resources for all our activities. 
In closing I would like to touch upon a matter of great concern to all
of us . 
Access to the best treatment. The biggest challenge of them all . How
can we ensure our patients continue to receive the treatment they need . 
Till the advent of Imatinib and targeted therapy all patients whose
malignancies could be clubbed under GIST were scattered and diagnosed as non
specific sarcomas . 
Imatinib and GIPAP made it possible to consolidate all these cases
under one arm of care and our physicians have shared with us how then neo
adjuvant therapy with Imatininb further improved their patients’ chances of
survival . Follow up post surgery was no possible with the medication. 
In Tata Hospital , in Mumbai , where we began our first GIST focussed
meetings , the physicians have come to back to us to say how much these have
helped both they themselves as well as the patients to manage the disease .
Compliance has improved , follow up has improved , patients’ well being levels
have gone up , their nutrition has improved as has their understanding of the
side effects . Nutrition is a great matter of concern in our part of the world
with malnutrition already a given and then the site of the malignancy making it
more sensitive . Sessions in the meetings devoted to this aspect has seen much
needed improvements in the patients’ understanding .
But what when the disease progresses and the patient fails to respond
to Imitanib ? This then is the ultimate challenge .
There is the option of second and third generation drugs but these are
not easily available and even if they are the costs are prohibitive . 
There are access programmes in place for patients from low socio
economic groups but there are still patients from modest backgrounds who cannot
afford to buy the drugs. Insurance and reimbursement policies in India do not
serve a large segment of the population and cost of hospitalisation and
medicines is most of the time out of pocket expenses for most families .
Injectable vs oral chemotherapy drugs . 
Even if resources can be raised , choices are very limited for physicians
We are hoping that drugs like regorafenib will receive approval from
the authorities. Pazopanib , approved for Sarcomas is being prescribed for
those who can afford purchase it. 

The Max Foundation is ready to work with total commitment in all the
low and middle income countries to try and bring these life saving drugs to
hopeful and waiting patients. 


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