MEETING REPORT - The Max Foundation...Ong Mei Ching, Regional Head for South Asia, Viji Venkatesh...

MEETINGREPORT

18 - 19 December 2016 • Kochi, IndiaInd KochcembeDecember 2016 • Kochi, IndiaIn6 • Kocembe

Capacity Building MeetingCapac uildinCapacity Building Meetingapac uildifor Cancer Advocatesvocaor Cafor Cancer Advocatesdvocafor Ca

RISING SUN

An initiative of The Max Foundation

2 2Rising Sun 2016 | Meeting Report 2

Executive Summary• Sharing, Learning and Taking Action• One-On-One Medical Insights• Empowering Advocacy Efforts• Leadership and Communication• Survey Among Patient Organisations in Max Global Network: Baseline Understanding • Continuing Needs

Welcome to Rising Sun 2016

Rising Sun 2016 Agenda

Rising Sun 2016 Sessions

Best Practice Sharing: Optimum Use of Available Resources to Create Maximum Impact• Chai for Cancer – “Drink to a Cause”• Polymerase Chain Reaction (PCR) Campaign 2016• Acrostic Poem Contest• A Viral Effect Case on Social Media• Free Hugs Campaign• Engaging with Policymakers-Changing Medication Collection Requirements for CML

Patients in West Java• Best Practice Sharing by Other Patient Groups

Medical Sessions on Chronic Lymphocytic Leukaemia (CLL)• Living Well with CLL: Case Studies by Dr. Raymond Wong, Clinical Associate Professor

(Honorary), The Chinese University of Hong Kong• CLL in India by Dr. Suresh Advani Hariram, Director of Medical Oncology, Jaslok Hospital

and Research Centre

Medical Sessions on Chronic Myeloid Leukaemia (CML)• Long Term Side Effects of Tyrosine Kinase Inhibitor (TKI) in CML Patients: The known and

unknown by Dr. Hari Menon, Senior Consultant Hemato-Oncology, Cytecare Hospital• Treatment Free Remission (TFR): What should CML patients know? by Dr. Raymond Wong,

Clinical Associate Professor (Honorary), The Chinese University of Hong Kong• The Role of Molecular Monitoring in CML Management: How can we do better together?

by Dr. Pankaj Malhotra, Professor of Clinical Hematology, Institute of Medical Education and Research (PGIMER)

CONTENTS4

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Building Capacity and Empowering Advocacy Efforts• Polymerase chain reaction (PCR) Advocacy Toolkit-Introduction, Training and the

Challenges Faced by the CML Community in the Region by Kathy Redmond, Redmond Consulting

Medical Session on Gastrointestinal Stromal Tumor (GIST)• GIST 101 & Besides Medical Treatment by Dr. Shailesh V. Shrikhande, Chief,

Gastrointestinal & HPB Surgery, Professor, Surgical Oncology, Tata Memorial Hospital

Building Capacity and Empowering Advocacy Efforts• People Leadership and Effective Communication Workshop by Valentino Lee,

Leaderonomics Sdn Bhd

Assessment Report: Looking Closer at Max Global Network Partners in the Region, Survey Findings and Discussion

Conclusion

Quotes by the Speakers

Testimonials by Patient Advocates

Photo Gallery

About Us• The Max Foundation• Rising Sun• Meet the Rising Sun 2016 Steering Committee

Sponsors Acknowledgment

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Rising Sun 2016 was held from 18 – 19 December 2016 at the Hotel Abad Plaza, Kochi, India, organised by The Max Foundation, in partnership with the Rising Sun Steering Committee formed by patient advocates. The meeting was made possible with the commitment and support of our highly valued sponsors - Novartis Oncology, Janssen, Amgen, Bristol-Myers Squibb and Otsuka.

The goals of this regional meeting is to strengthen capacity building skills and knowledge of participating patient groups by sharing the latest medical updates on the disease, which will then be passed on to group members in their respective countries. Rising Sun also aims to empower patient advocates to take up leadership roles and boost their spirits to continue their advocacy efforts to create a meaningful impact in their local community and the region. A total of 70 delegates participated in the meeting; representing 22 organisations from 16 countries.

SHARING, LEARNING AND TAKING ACTION

The Rising Sun 2016 Meeting was ‘ACTION’ and ‘IMPACT’ oriented. This was evident in the programs lined-up during the meeting. The Best Practice Sharing highlighted the initiatives carried out by advocates using limited available resources to create maximum impact in their communities. This session gave advocates an opportunity to share their experiences and learn from each other. It also served as an important platform for advocates to be recognised for their efforts and contribution in creating a meaningful impact in the communities they serve. Patient organisations showcased their initiatives on posters, which were evaluated at the end of the meeting as part of the Best Poster Competition. Four patient organisations were chosen as winners. However, all 16 participating patient organisations were recognised for their commitment and effort.

ONE-ON-ONE MEDICAL INSIGHTS

Medical sessions are essential for advocates to understand the disease, keep up with the latest advancements in disease management and be knowledgeable in the relevant disease-related topics. The knowledge gained would better equip advocates to provide necessary support to other patients and continue their advocacy efforts in the community. It also presents an opportunity for patient organisations to meet and learn from medical experts. In Rising Sun 2016, medical sessions were devoted to discuss Chronic Myeloid Leukaemia (CML), Chronic Lymphocytic Leukaemia (CLL) and Gastrointestinal Stromal Tumor (GIST).

EXECUTIVE SUMMARY


EMPOWERING ADVOCACY EFFORTS

Monitoring is a key component in CML care. RRising Sun 2016 included a session focusing on the access to Polymerase chain reaction (PCR). Stakeholder engagement and other challenges were discussed in a mapping exercise, which helped advocates. PCR Advocacy Toolkit (an initiative under My PCR) was introduced during the session.

LEADERSHIP AND COMMUNICATION

A Leadership and Communication workshop was held on the last day to better equip advocates in managing their effort in patient support and advocacy. Advocates represent local leaders to provide cancer care. Hence, it is important to ensure this meeting provides the necessary skills to help advocates manage the challenges they face and support their continued growth.

SURVEY AMONG PATIENT ORGANISATIONS IN MAX GLOBAL NETWORK: BASELINE UNDERSTANDING

It is imperative that we monitor our progress to understand the challenges faced and identify solutions to improve the outcomes of our efforts. The Assessment Report: Looking Closer at Max Global Network (MGN) Partners in the Region discussed the survey findings by University of Washington on MGN members, focusing on each patient organisations’ structure, resources, activities and level of monitoring as well as evaluation of their efforts.

CONTINUING NEEDS

Rising Sun 2016 concluded with a strong recommendation for this kind of face-to-face meetings to continue as a platform for advocates to share and learn from one another to enable them to continue their efforts in creating a meaningful impact in the community. A majority of the patient organisations in these two regions are run on a volunteer basis. As such, they constantly face resource constraints to organise training programs for their key advocates. Hence, platforms like the Rising Sun are essential in providing patient organisations in the region the opportunity to share their best practices, learn and support each other to develop their capacity to inspire other patients and caregivers to live with dignity and hope.


The Rising Sun 2016 Capacity Building Meeting for Cancer Advocates in the Asia Pacific and South Asia Region was held from 18 – 19 December 2016 at the Hotel Abad Plaza, Kochi, India.

On behalf of The Max Foundation and Rising Sun Steering Committee, Regional Head for Asia Pacific, Ong Mei Ching, Regional Head for South Asia, Viji Venkatesh and Trustee and Joint-Secretary of Friends of Max, Pramod John George gave the enthusiastic group of patient advocates from 22 patient organisations of 16 different countries in the region a very warm welcome to the Rising Sun 2016.

In her welcoming address, Ong Mei Ching said, “Through Rising Sun, we aim to share the best practices in the field, develop the skills and build the capacity of patient leaders. Seize this opportunity to network with the medical experts and other patient advocates present at the meeting as we learn by asking, sharing and taking action”.

Rising Sun 2016 will focus on ‘ACTION’ and ‘IMPACT’. The programs and training sessions organised will better equip patient leaders to localise the learning to be implemented in their respective countries, and work collectively towards a common goal.

Viji Venkatesh embraced the delegates with a cheerful welcome. “We can see sparks of joy here today amongst the Rising Sun delegates and the Friends of Max City Chapter Leaders; and this is one big achievement”. She also introduced members of the Rising Sun Steering Committee, who played a key role in making this meeting a success.

Pramod John George took this opportunity to acknowledge the Rising Sun 2016 esteemed sponsors, Novartis Oncology, Janssen, Amgen, Bristol-Myers Squibb and Otsuka, who have helped to make this meeting possible. He also thanked the speakers for taking time off from their busy schedules to share their expertise at the meeting. He expressed appreciation to the Secretariat Team and added, “Each individual present at Rising Sun 2016 will bring to this forum their stories and experience; and will contribute to ensure this meeting is successful”. He welcomed the delegation to Incredible India - “Together, we can share values and create a greater impact in the community we live in”.

On that note, the Rising Sun 2016 Capacity Building Meeting for Cancer Advocates in the Asia Pacific and South Asia Region was officiated on Sunday, 18 December 2016 with a round of energetic applause from the delegation.

WELCOME TO RISING SUN 2016


RISING SUN 2016 AGENDA

Day 1Sun, 18 Dec

0630 – 0730 Yoga for FitnessAbad Plaza, Rooftop, 6th Floor

Rising Sun Registration Abad Plaza, Grand Ballroom, 2nd Floor

Welcome Remarks

Lunch

Coffee Break

Dinner, Off-site

Capacity & Advocacy PCR Advocacy Toolkit: Introduction & Training Kathy Redmond, Redmond Consulting

Capacity & Advocacy Best Practice Sharing by Patient Groups in the Region

Medical on CLL

Living Well with CLL Dr. Raymond Wong, Clinical Associate Professor (Honorary), The Chinese University of Hong Kong

CLL in India Dr. Suresh Advani , Director of Medical Oncology, Jaslok Hospital and Research Centre

Medical on CML Long Term Side Effects of Tyrosine Kinase Inhibitor (TKI) in CML Patients: The known and unknownDr. Hari Menon, Senior Consultant Hemato-Oncology, Cytecare Hospital

Treatment Free Remission (TFR): What should CML patients know? Dr. Raymond Wong, Clinical Associate Professor (Honorary), The Chinese University of Hong Kong

The Role of Molecular Monitoring in CML Management: How can we do better together? Dr. Pankaj Malhotra, Professor of Clinical Hematology,Institute of Medical Education and Research (PGIMER)

0800 – 0900

0900 – 0915

0915 – 1215

1215 – 1315

1315 – 1415

1430 – 1540

1540 - 1610 1610 – 1800

1800 – 2100

Agenda


Day 2Mon, 19 Dec Agenda

Medical on GIST GIST 101 & Besides Medical Treatment Dr. Shailesh V. Shrikhande, Chief, Gastrointestinal & HPB Surgery, Professor, Surgical Oncology, Tata Memorial Hospital

Capacity & Advocacy Leadership & Communication Workshop Part 1 Valentino Augustine Lee, Leaderonomics

Capacity & Advocacy Leadership & Communication Workshop Part 2 Valentino Augustine Lee, Leaderonomics

Capacity & Advocacy Assessment Report: Looking Closer at Max Global Network Partners in the Region Survey Findings & Discussion

Best Poster Award, Closing

Lunch

0830 - 1000

1030 – 1200

1330 – 1630 1200 – 1330

1630 – 1715

1715 – 1730

1000 - 1030 Coffee Break


SUNDAY, 18 DECEMBER 2016 (DAY 1)

BEST PRACTICE SHARING: OPTIMUM USE OF AVAILABLE RESOURCES TO CREATE MAXIMUM IMPACT

At the base of every patient organisation is the solid commitment to provide best practice sharing to promote first-class knowledge exchange, networking and collaboration between patient organisations in the Asia Pacific and South Asia regions and other stakeholders.

This session aims to support the work undertaken by patient organisations and to explore additional channels for the promotion of initiatives and opportunities for networking and collaboration.

Chai for Cancer – “Drink to a Cause”Presented by:Sujeesh Sukumaran, Friends of Max, IndiaVijaya Sundaram, The Max Foundation, India

The Chai for Cancer – “Drink to a Cause” is an awareness and fundraising campaign. Tea is a popular drink in most parts of the world. In India, tea is called ‘chai’ and it is associated with positive happenings. This campaign uses informal hangouts or ‘Addas’ complete with a cup of chai and refreshments to bring together likeminded donors and supporters of the cause.

Associating a dreaded disease with a common beverage like chai in an informal environment establishes an easy-to-understand, non-verbal connection between people to create awareness, encourage discussion and dispel myths or fallacies about CML and GIST. The funds raised are used for a wide-range of patient-focused activities. More than 100 Addas have been held all over India since 2014. The key success factor for this campaign is its simplicity. It can be tailored to different cultures and organised by anyone, anywhere and anytime.

Polymerase chain reaction (PCR) Campaign 2016Presented by:Moshaddek Alam, Bangladesh CML Supporting Group

PCR Campaign 2016 is a global awareness effort to explain the importance of PCR in CML monitoring

RISING SUN 2016 SESSIONS


and help people face cancer around the world by involving patients, physicians and volunteers. The objective of the campaign is to empower patients to play an active role in their treatment by ensuring they have the right information about PCR monitoring.

The campaign targeted physicians, nurses, patients and caregivers. Organisers used posters and social media to share information and create awareness about PCR. They also organised a cake-cutting ceremony in three hospitals. Around 16 physicians, 12 volunteers and 60 patients participated in the campaign. The campaign was featured in three national dailies for successfully engaging the community and promoting team building. Presenter, Moshaddek Alam, highlighted the key points of the campaign and shared some tips on approaching the media for publicity and promotion.

Acrostic Poem ContestPresented by:Jung Ho Park, Zero Club, Korea

In conjunction with CML Day, Zero Club planned an Acrostic Poem Contest for its members, which is simple, effective and easy to access. The objective of the event is to create awareness about CML and PCR amongst its members and give hope for CML patients. This campaign is a strategic collaboration between Korea Blood Cancer Association (KBCA) and Zero Club.

The subject of the poem is CML and/or PCR focused. The contest was held from 13 to 25 September 2016 on the Zero Club website. The announcement of the contest had 537 views and 34 participants. KBCA sponsored the prizes for the winners. The Acrostic Poem Contest gave CML patients a platform to share their feelings.

A Viral Effect Case on Social MediaPresented by:Gu Hong Fei, house086.com, China

This social media campaign was inspired by the death of a young celebrity movie star who committed suicide after being diagnosed with cancer because she was afraid of chemotherapy. The patient group produced an online video to inform the public that lymphoma is a curable cancer and educate patients about the benefits of chemotherapy as a safe treatment option.

Former President of Google China, Kai-Fu Li, who has been diagnosed with lymphoma, alongside other experts in the field supported the social media campaign. The online video, with a production cost of US$800, was viewed 1,000,000 times in the course of 3 days and received 154 comments. Most of the feedback received was positive, reinforcing faith in modern medical technology.


The key learning points from this campaign include:• Leverage on current issues and take action while it’s still newsworthy;• Control the production cost by maximising the available resources; and• Smart use of a social media platform in engaging celebrities to support the cause.

Free Hugs CampaignPresented by:Jhonnel Mesina Azarcon, Touched by Max, Philippines

The Free Hugs Campaign aimed to dispel the myth that CML is a contagious disease and educate the public that CML is a non-communicable disease, which cannot be transmitted through physical contact.

The resources used were simple and minimal: CML awareness t-shirts and pamphlets, cardboard signage and counters indicating the accumulated number of hugs. The target audience for this campaign were the Sunday morning joggers/general public of Quezon Memorial Circle. The Free Hugs Campaign successfully engaged more than 200 people, who were curious to learn about CML and help the cause.

The Free Hugs Campaign reinforced a fundamental message – the remarkable power of human touch that creates a connection between people. This was evident at the end of the presentation when almost everyone was in tears as several members of the delegation walked up to Jhonnel and gave him a hug.

Engaging With Policymakers – Changing Medication Collection Requirements for CML Patients in West JavaPresented by:Andrian Rakhmatsyah, Indonesian CML and GIST Community

In order for CML patients in West Java to collect the needed medication (Imatinib and Nilotinib) every month, aside from the latest blood test and BCR-Abl test results, they were also required to submit their latest morphology test results. This requirement is an added burden to patients in terms of the high cost involved and long waiting-time.

The aim of this campaign was to get policymakers (BPJS Kesehatan) in Hasan Sadikin Hospital, Bandung to change the requirements and simplify the process involved in the collection of CML medication. This issue was highlighted to the Chief of Hematology (HOM) Division at Hasan Sadikin Hospital, Bandung and a Member of the Committee of the National Formulary of the Ministry of Health, Indonesia. Following discussions, the advocate had successfully convinced policymakers to remove the above requirements within a week.


It is important for patient advocates to understand the medical regulations in their country and maintain a good relationship with their haematologist as well as important stakeholders with the power to influence the system.

Best Practice Sharing By Other Patient Groups

• Blood Cancer Society Nepal - Translated FAQ booklets into Nepali language for patients.• Korea Blood Cancer Association (KBCA) - Published free magazines to create awareness amongst

the public and provide medical updates for the benefit of patients.• Max Family Society Malaysia - Utilise the free communication platforms to increase engagement

with patients, volunteers, media and the public.• Max Smiles Thailand - Patient leaders initiated the first fundraising event in public.• National Cancer Council of Mongolia - Full commitment from the volunteers in producing disease

booklets for patients. • Shanghai Roots & Shoots - Retained patient volunteers through hobby classes.• Sri Lanka CML & GIST Collective - Combating stigma by raising the voices of those facing cancer.• Taiwan Bone Marrow Transplantation Association - A chain systematic volunteering management

to empower veteran volunteers to train new ones. • Thai CML Patient Group - Fundraising through social media to help patients in need. • V-Care Foundation - A cancer helpdesk to provide information to patients and their caregivers on

the different types of assistance available.


MEDICAL SESSIONS ON CHRONIC LYMPHOCYTIC LEUKAEMIA (CLL)

Session I : Living Well with CLL: Case StudiesSpeaker : Dr. Raymond Wong, Clinical Associate Professor (Honorary), The Chinese University of Hong Kong

Dr. Raymond Wong explained the basics of CLL, the causes and symptoms. He said CLL patients do not usually have any symptoms and the disease is identified from blood tests, which will show a significant increase in white blood cells. He described the clinical features of CLL, how can physicians diagnose the disease and the survival rate for patients. He discussed the treatment options for CLL, which includes the wait and watch approach, chemotherapy (single or combination) and targeted therapy (monoclonal antibody and B-cell receptor signalling pathway inhibitors). He explained the benefits of the wait and watch approach when the disease is still in its early stage. He added, current therapies do not offer a cure for CLL but these treatments help to manage the disease. He talked about the choice of treatment regimen for CLL patients, possible complications and common side effects. He said older patients have other complications and are less tolerant to treatment. As such, he suggested more supportive treatment for older patients. He discussed patient case studies to provide an in-depth understanding of CLL. He reassured patient advocates that new therapies have been approved and other potential new treatments are being evaluated in clinical trials. He concluded the session by saying this is a hopeful time for CLL patients as progress towards a cure is underway.

Session II : CLL in IndiaSpeaker : Dr. Suresh Advani Hariram, Director of Medical Oncology, Jaslok Hospital and Research Centre

Dr. Suresh Advani Hariram gave an overview of CLL in India. He said there are many challenges in diagnosing and treating CLL; and that these challenges vary in developed and developing countries. He said CLL is generally a disease of the elderly because of the increase in the life span. He added, CLL is usually diagnosed incidentally as patients are asymptomatic. He highlighted that general physicians have limited knowledge of CLL and patients are not educated about the disease properly. He said physicians need to communicate with CLL patients and their families to give them sufficient information and reassurance. He said we are on the verge of some discoveries that will change the disease and improve the quality of life for CLL patients.


MEDICAL SESSIONS ON CHRONIC MYELOID LEUKAEMIA (CML)

Session I : Long Term Side Effects of Tyrosine Kinase Inhibitor (TKI) in CML Patients: The known and unknownSpeaker : Dr. Hari Menon, Senior Consultant Hemato-Oncology, Cytecare Hospital

Dr. Hari Menon explained, no drug is absolutely safe but the benefits of using the drug outweighs the side effects. He reasserted that adherence to therapy is imperative as far as CML is concerned. He said it cannot be explained why the side effects occur nor can physicians predict who will be affected by them. He said the incidence of CML continues to increase day-by-day and it is becoming difficult to sustain the use of these drugs because of the cost involved. He discussed the use of TKI and the common side effects associated with the drug including cardiac toxicity, abnormal bone and mineral metabolism, gynecomastia, hepatotoxicity, cutaneoustoxicity and alteration in immune function. He said we need not be too concerned with delayed toxicities particularly in relation to Imatinib. He talked about concerns related to 2nd and 3rd generation TKIs-peripheral vascular disease/IHD/strokes, pulmonary artery hypertension and venous thrombosis. He said risk of pleural effusion exists with all TKIs-more so with Dasatinib but it is usually reversible and mild. He added, pneumonitis is rare with Imatinib and it is considered an allergic responsive drug and should be monitored. He said pulmonary artery hypertension (PAH) is more prevalent with Dasatinib and should be watched closely and picked up early. He talked about coping with fatigue, which can be due to various factors. However, he said there are no definite strategies to treat fatigue but suggested exercise and counselling to improve the condition.

Session II : Treatment Free Remission (TFR): What should CML patients know?Speaker : Dr. Raymond Wong, Clinical Associate Professor (Honorary), The Chinese University of Hong Kong

Dr. Raymond Wong explained TFR in CML refers to the maintenance of deep molecular response without continuing TKI therapy usually after achieving undetectable molecular residual disease (UMRD). He referred to the STIM Study. Molecular remission is sustained in around 30% of Imatinib-treated patients who stop treatment after ≥2 years with UMRD by conventional real-time reverse transcription PCR. Around 20%–30% of patients will lose UMRD, but remain in stable major molecular remission off treatment. With the increase in data availability, the definition of TFR is changing. He referred to the ENESTFreedom Study and Euro-SKI Study. He discussed the risks and benefits associated with TFR. He said it is important to monitor patients closely after they stop treatment to ensure the disease does not relapse. He concluded by saying TFR is emerging as the goal of treatment in CML. However, he said an individualized decision is very important, adding, we need to balance the benefits versus risks associated with TFR.


Session III : The Role of Molecular Monitoring in CML Management: How can we do better together?Speaker : Dr. Pankaj Malhotra, Professor of Clinical Hematology, Institute of Medical Education and Research (PGIMER)

Dr. Pankaj Malhotra discussed the role of molecular monitoring in CML management using anecdotes. He talked about the importance of periodical monitoring to manage CML. He said poor adherence is the main factor leading to the loss of response to treatment. He cited cost and the lack of facilities as amongst the barriers to conduct molecular monitoring. He said the service is generally available in metropolitan cities and corporate hospitals in India, but not in government hospitals, where a majority of CML patients seek treatment. Even if the facilities are available, it does not always adhere to international standards. He added, most physicians do not recommend the test to patients for various reasons. He said advocate groups like Friends of Max and Rising Sun can make a difference by engaging more effectively with relevant stakeholders to provide this service to CML patients. He suggested to have standardised CML centres that offer this test at a reasonable cost to assist patients. He concluded by saying CML can be a curable cancer with proper adherence to treatment and through the empowerment of patients.

BUILDING CAPACITY AND EMPOWERING ADVOCACY EFFORTS

Session I : PCR Advocacy Toolkit-Introduction, Training and the Challenges Faced by the CML Community in the RegionSpeaker : Kathy Redmond, Redmond Consulting

This session primarily focused on the challenges faced in accessing PCR testing in the different countries represented at the meeting. Kathy explained it is important to understand the reality of the situation in each country because the problems vary in different communities. She added it would be too simplistic to assume the problem is only money. She said the first step is raising awareness and the second step is taking action. She engaged the patient advocates to share ideas on how to advocate effectively for PCR testing in CML patients by doing a stakeholder mapping exercise.

She invited Pat Garcia-Gonzalez, CEO of The Max Foundation to introduce the MyPCR Advocacy Toolkit to support advocacy campaigns. Pat shared that the PCR campaign started in the Rising Sun a few years back. She said though many wonderful initiatives have been undertaken for PCR testing, we have yet to advocate this important cause to the governments for their support and involvement. There are plenty of resources available but we need to learn how to use them effectively. Kathy mentioned that the electronic version of the MyPCR Advocacy Toolkit will be made available in early 2017 and explained the importance of the toolkit.


Further, she stressed on the importance of having global representation because the issues vary in different countries. She talked about the importance of understanding the problem, setting goals and identifying as well as engaging the priority stakeholders for PCR access campaign. She said it is important to develop the message and communicate them effectively to priority stakeholders. She stressed on the importance of establishing strategic alliances and making a case to key decision makers. She said patient advocates need to raise public awareness about the issue and this can be done via the mass media, social media and through hosting awareness events. She said we need to empower individual CML patients to take action. She explained engagement with the media is not without its risks. She added, very high profile diseases tend to dominate the disease awareness space and it is difficult to secure media attention for rarer diseases. She urged patient advocates to be ambitious and realistic in their efforts.

MONDAY, 19 DECEMBER 2016 (DAY 2)

MEDICAL SESSION ON GASTROINTESTINAL STROMAL TUMOR (GIST)

Session I : GIST 101 & Besides Medical TreatmentSpeaker : Dr. Shailesh V. Shrikhande, Chief, Gastrointestinal & HPB Surgery, Professor, Surgical Oncology, Tata Memorial Hospital

Dr. Shailesh V. Shrikhande explained the nature of GIST and said almost all cases are potentially malignant, with 10%-30% being highly malignant. The disease is yet to be clearly categorised but with advancement in medical technology, an increasing number of cases are being discovered. It is the first tumour to benefit from targeted therapy. He stressed that surgery is the only curative option. GIST does not have any specific clinical presentation and diagnosis is usually incidental. In India, GIST is discovered at advanced stages. He discussed the challenges in diagnosing GIST and the best treatment options in controlling and managing the disease. GIST could be a hereditary disease. He explained preoperative use of Imatinib helped to reduce the extent of surgery and to preserve the organ and its function. As such, there is an increasing trend towards using preoperative Imatinib in borderline resectable GIST and to perform more conservative organ preserving surgical resections in the last 3 years. He also said KIT exon 11 mutations have the best response rate and long-term survival with Imatinib treatment. He explained, upfront evaluation of kit mutation status may help in delineating separate treatment strategies for potentially biologically different tumours and assessing the correct timing of surgery for this subset of GIST. He discussed second line treatment for GIST. He said the use of Imatinib has brought about a paradigm shift in the treatment of GIST. He added, the role of Sunitinib and many other agents are now being evaluated and future prospects look bright. He also talked about living with GIST, addressing the lifestyle and dietary changes in patients.


BUILDING CAPACITY AND EMPOWERING ADVOCACY EFFORTS

Session I : People Leadership and Effective Communication WorkshopSpeaker : Valentino Lee, Leaderonomics Sdn Bhd

Valentino Lee discussed the four essential qualities of a good leader –‘action’, ‘people’, ‘influence’ and, ‘plan and process’ oriented. Different leadership styles will produce different results and hence, it needs to be tailored to the situation. He talks about situational leadership, the coaching process, assessment, communication and rapport building. The session helped advocates to learn and develop their leadership and communication skills to manage their group and volunteers better and create a greater impact in their community.

Session II : ASSESSMENT REPORT: LOOKING CLOSER AT MAX GLOBAL NETWORK PARTNERS IN THE REGION|SURVEY FINDINGS AND DISCUSSIONSpeakers : Yee Jia Heng and Ameya Surve, The Max Foundation

In this session, Yee Jia Heng and Ameya Surve co-presented the report, which consisted two sections: first, the Max Global Network (MGN) and second, key findings from the Assessment Report conducted in partnership with University of Washington on MGN members in the Asia Pacific and South Asia regions.

Max Global Network (MGN)MGN is a robust system of outstanding patient associations and community leaders who share The Max Foundation’s (Max) mission and vision. Max carries out key initiatives in partnership with these dedicated organisations and leaders. In addition to the organisations that Max has helped to create, many other patient associations have joined as partners in MGN.

MGN in Asia Pacific and South Asia RegionsTo-date, MGN has 70 patient organisations from 57 countries worldwide. Out of this number, 19 organisations from 15 countries are from the Asia Pacific and South Asia regions. Most of the advocates at Rising Sun 2016 are MGN members.

MGN|Campaigns and Initiatives

Maximise Life CampaignMaximise Life Campaign (MLC) is one of the key initiatives of MGN. It takes place during the month of October (in conjunction with Max’s birthday) and implemented in partnership with MGN patient organisations. MLC helps to increase awareness, combat stigma, and elevate the voices of people facing cancer especially in low- and middle-income countries, where cancer stigma is most pervasive, access to treatment is scarce and survival rates are below standard. The campaign features stories by speakers that have been impacted by cancer; as well as engaging


volunteers in event planning and execution. Max offers grant opportunities to MGN members to run MLC every year. My PCRMy PCR is another initiative undertaken by MGN, focused on raising awareness amongst the CML community of the importance of standardized diagnostics and monitoring. In My PCR, grants are available for member groups to carry out their advocacy activities in relation to PCR monitoring.

Rising SunRising Sun is the regional conference (for Asia Pacific and South Asia) where patient advocates and associations gather to impart best practices, strengthen organisational capacities and refine leadership skills. Patient advocates require training to better equip themselves with knowledge as well as leadership and communication skills in order to work more effectively with the patient groups in their country and at the regional level. This capacity-building conference is open to members of MGN and other groups who would benefit from participating.

The Max Global Network Partner Assessment in South Asia & Asia Pacific Regions: Key Findings In the third quarter of 2016, Max engaged the University of Washington (UW) to conduct a survey to better understand MGN organisations, the structure, resources, activities, and level of monitoring as well as evaluation of their efforts. 19 MGN organisations representing 16 countries participated in the survey.

Survey Key FindingsThe following points highlight the key findings of the survey:• Ten of the 19 organisations (52%) are formally registered as a non-profit with their government, and

one organisation is awaiting approval.

• Sixteen organisations (84%) offer one-on-one support for patients. Ten organisations (62%) reported keeping track of attendance at one-on-one support activities, and five out of the 16 organisations (31%) reported collecting feedback from patients regarding the support.

• Twelve organisations (63%) conducted workshops with patients, their families, and/or medical professionals. Nearly all organisations that conduct workshops track participant attendance (92%), and half sought to measure how the workshops improve cancer knowledge or improve understanding of adherence among participants.

• Nearly all (95%) organisations participated in at least one CML or cancer-related conference in 2015. More than half of the organisations that collected information from the conferences reported that they used the information to improve future conferences, including logistics management.


• Five organisations (26%) conducted trainings in 2015. Four of these five organisations (80%) collected attendance information. Two of these organisations reported collecting additional information regarding the quality of training topics; and one organisation reported using the results to identify training needs and effectiveness.

• Through advocacy efforts, more than half of the organisations (58%) reported that they were able to achieve greater visibility of CML. Seven organisations (37%) reported they were able to establish new partnerships and alliances, and six organisations (32%) were able to identify new donors.

• The majority of organisations (74%) reported financial challenges. Many of the comments reflected the difficulty in serving patients in a climate of decreased funding, particularly from the corporate sector.

RecommendationsThe researchers from University of Washington have made some recommendations based on the findings of the baseline assessment as outlined below:

• Encourage each partner organisation to monitor their work in terms of metrics that lead to a better understanding of how well a program is functioning and the effect that it has on the population.

• Consider hosting leadership retreats and trainings to facilitate opportunities to share experiences from an administrative perspective among MGN partner organisations

• Key terms may have different meanings for each country, such as member, patient and volunteer, and there may be differences in translations as well. Creating consistent terminology will improve understanding across countries and regions.

• MGN partners are encouraged to identify the process of developing indicators at the program and population level, which are important for MGN partners going forward. MGN partners need to determine what is feasible to measure, depending on the resources available and the needs of the organisation.


Rising Sun 2016 focused on taking action and creating a meaningful impact in the community. In order for patient advocates to take action, they need to first understand the challenges that exist in their community and equip themselves with knowledge, leadership and communication skills. This year, in addition to the formal presentations and panel discussions, participants shared their best practices through presentations and posters. The various formats of engagement aimed to encourage interaction amongst participants, as well as between participants and the speakers with the goal of maximising the learning experience.

While CML, CLL and GIST remain a very challenging cancer to treat, new treatments that capitalize on advances in understanding of molecular biology are providing both patients and physicians with a reason for cautious optimism. The key component for any cancer control plan is diagnosis and treatment. In order for a diagnosis and treatment programme to be effective, it should not be developed in isolation. Cancer patients and caregivers need to engage with their physicians to understand their disease better and empower themselves with knowledge.

Some countries have limited specialists in the areas of CML, CLL and GIST. As such, not all physicians have the expertise to diagnose and treat patients effectively. The Government and Ministry of Health in these countries should be made aware of this challenge. Medical associations and relevant medical bodies also need to play an active role to create more awareness of this by having continuing medical programs targeted at the patients, caregivers, physicians and paramedical personnel to improve the awareness as well as the diagnosis of the disease.

Patient organisations also raised concerns about burdensome regulations that make it difficult for patients to access treatment. Hence, it is essential that advocates learn to strategise and communicate effectively to ensure their message reaches the targeted stakeholders. They need to build a rapport with policymakers and the media to ensure their voice is heard. Rising Sun 2016 stressed on the importance of establishing strategic alliances and making a strong case to key decision makers. Patient advocates are encouraged to raise public awareness about the issue via the mass media, social media and through hosting awareness events.

In some countries in the Asia Pacific and South Asia regions, patients have limited access to monitoring tests, especially PCR testing based on International Standards (IS). It is a key priority to ensure PCR testing is available to all CML patients. The Max Foundation developed the MyPCR Toolkit for CML patient advocates to address the need for a resource to guide the implementation of a PCR campaign in their country.

CONCLUSION


Generally, physicians see a large number of patients and have limited time to educate them. Lack of physician-patient communication creates frustration and confusion for patients. From that perspective, Rising Sun provides an excellent platform to educate CML, CLL and GIST advocates who will then educate other patients in their country so that when they see their physicians, they have some basic understanding of their disease, which makes it easier for the physicians to engage with them. Rising Sun 2016 stressed that education is key to empowerment.

Cancer has a major impact on communities across the world. It is essential for patients, caregivers, health professionals, researchers, policymakers and governments to understand the impact of cancer and address the challenges the disease poses to the community at large. It is equally important to understand the statistical trends for measuring the success in efforts to control and manage cancer.

The latest MGN patient groups survey in the Asia Pacific and South Asia regions highlighted some of the key issues and challenges that advocates face in the communities they serve. A major challenge for small patient groups in the region is the lack of training programs due to limited resources, expertise as well as funding. As a result, these patient groups are not well equipped in terms of knowledge, leadership and communication skills to provide the necessary support to patients and caregivers as well as engage effectively in advocacy efforts to create a meaningful impact in their communities.

Rising Sun 2016 introduced leadership and communication topics for the very first time to empower advocates and address their needs in carrying out advocacy work. Based on the feedback received, advocates require training to develop their leadership and communication skills. One of the key characteristics of a leader is the ability to influence; and cancer advocates are working hard to develop this quality so that they can create a meaningful impact in their community. Since leadership and communication are highly rated as amongst the most important skills needed by advocates, it is recommended to include these topics in the next Rising Sun meeting in a workshop format.

Best Practice Sharing (verbal and visual) is also an effective form of knowledge sharing amongst advocates. The Best Practice Sharing session was greatly appreciated this year for its high content quality and diversity of themes. It is recommended that this session is included as a key component in subsequent meetings.

The Max Foundation and Rising Sun Steering Committee have identified post-Rising Sun networking as one of the key components that needs improvement to ensure sharing and learning is ongoing amongst advocates until the next face-to-face meeting takes place. This can be done by maintaining e-mail group communication; maximising the utilisation of technology to reach out to one another; and by participating in activities under the Max Global Network.


“It is a very engaging conference that brings a lot of new insights to the groups here. I think this kind of a sharing session is very important because we get to learn from each other, understand the challenges faced in different countries in the region and find solutions; and together bring progress and advancements in CML, CLL and GIST treatment in the region. It’s an important platform to bring hope to patients. We need meetings like this to understand the disease from the patient’s perspective so that we have a platform to work together to advance and improve patient care in the region”.

Dr. Raymond Wong, Clinical Associate Professor (Honorary),The Chinese University of Hong Kong

“We need to educate people. The education of people is relatively low. Doctors need to spend time to educate patients and their families.”

Dr. Suresh Advani Hariram, Director of Medical Oncology, Jaslok

Hospital and Research Centre

“Certainly, energy and enthusiasm pervades the entire meeting. There is a sense of family here and that’s very nice. People want to learn, they are also anxious to learn new things, and at the same time, they are a bit worried to accept the new things because they are used to a certain way of life. It is a slow process but these forums help in making those decisions. Over the years, I’ve got to know most of them and it’s nice because they give you a lot of love and affection. The best part of being a doctor is being able to give advice and suggestions that will help the patient in several ways...”

Dr. Hari Menon, Senior Consultant Hemato-Oncology, Cytecare Hospital

QUOTES BY THE SPEAKERS


“I am attending the Rising Sun for the first time though I attend the Friends of Max meetings regularly. I came to understand Rising Sun provides support for cancer

patients in Asia Pacific and South Asia countries. Any topic that creates interaction with the audience is good, there must be two-way communication to engage the

audience”.

Dr. Pankaj Malhotra, Professor of Clinical Hematology, Institute of Medical Education and Research (PGIMER)

“The Government and Health Ministries of various countries should be made aware that though GIST is a solid tumour, it can be treated with a combination of surgery and modern molecular biology medicines. Beyond that, the relevant medical bodies also need to create more awareness of this by having continuing medical programs, targeted at the patients, caregivers, physicians and paramedical personnel. This will improve the awareness as well as the diagnosis of what is an eminently treatable cancer. We have a good story with GIST but to change traditional beliefs, it’s a matter of education and awareness over a period

of time. It is a slow process but a definite process. Rising Sun is moving towards that. It is an effort that needs to be blossomed and nurtured so that it continues to grow. Give patients hope so they develop the ability to fight, the ability to cope with the problem and the one’s with the better mental make-up and support system usually do much better”.

Dr. Shailesh V. Shrikhande, Chief, Gastrointestinal & HPB Surgery, Professor, Surgical Oncology, Tata Memorial Hospital

“We need to have targeted advocacy for PCR. People are dying. We need to tell their stories to priority stakeholders”.

Kathy Redmond,Redmond Consulting


“This is something really exciting. I see a lot of people here, they are here to make life better for others. They are really selfless, putting others before them. We should get patient leaders worldwide to come together in [Rising Sun] 2017 to move as ONE across the globe. This will create so much awareness for everyone.Let’s make it big!”.

Valentino Lee,Leaderonomics Sdn Bhd


“This is my first time participating in Rising Sun. I get a lot of guidance from other advocates who

are more experienced than I am. In my country, patients do not really have a proper voice - there is a language barrier and patients are shy. Through meeting with other advocates in this meeting, I am inspired to continue my work”.

Danushka Erangi Weerasinghe, Sri Lanka CML & GIST Collective

“I am so fascinated of the learning and it is good to know there are

people who share the same motivation as you, it is very

exciting. I have all these ideas in my mind and I am

excited about how to apply these ideas in my country”.

Jhonnel Mesina Azarcon, Touched by Max, Philippines

TESTIMONIALS BY PATIENT ADVOCATES

“This is my first time here. I really enjoyed the confer-ence. I am very happy to be here. I learnt a lot from the doctors. It’s my happy time”.

Akiyama Chitose, IZUMI Society for CML Pa-tients & Families, Japan

The medical session were very good. It was very clear

and informative. I learnt a lot from these sessions”.

Paulus Maria Bagus Setiantoko, Indonesian CML & GIST Community (ELGEKA)

“The conference is fantastic. Medical speakers have been very good in answering all the questions in layman’s term, so people can understand. Cancer is definitely treatable. The key point is to have a strong support system within the family and through patient organisations like this. Patient advocacy groups are powerful in

helping newly diagnosed patients by sharing their stories and giving hope. Rising Sun is a great platform to achieve this.”

Dr. Nikhil Guhagarkar, Friends of Max, India


PHOTO GALLERY

A place where the individual and collective voice of patients, survivors and caregivers can be heard.

Sharing best practices in an interactive way.

Learning, taking action and creating impact.

Encouraging discussion with medical experts. Inspiring creativity in the Best Poster Competition. All the 4 winners pictured here with Pat.

Unity in Diversity - Participants from diverse cultures come together for cancer advocacy efforts.


PHOTO GALLERY

Developing leadership and communication skills.

Empower patient advocates to take up leadership roles.Rising Sun also offers bonding time.

Cultural show during offsite dinner.

Rising Sun aims to boost patient leaders’ spirits to continue advocacy efforts.

Rising Sun Steering Committee standing strong together.


Bangladesh Bangladesh CML Supporting Group (BCSG)

China House086.com Shanghai Roots & Shoots

India Lymphoma Support Group India V CARE FOUNDATION Friends of Max

Indonesia Indonesian CML & GIST Community Yayasan Kanker Indonesia Provinsi DKI Jakarta

Japan IZUMI

Korea Korea Blood Cancer Association Zero Club

Malaysia Max Family Society Malaysia

Mongolia National Cancer Council of Mongolia

Nepal Blood Cancer Society Nepal

New Zealand Leukaemia & Blood Cancer New Zealand

Philippines Touched By Max, Inc.

Sri Lanka Sri Lanka CML & GIST Collective

Taiwan Taiwan Bone Marrow Transplantation Association

Thailand Max Smiles Thailand Thai CML Patient Group

Vietnam Max’s Vie

Asia Pacific and South Asia Regional Team of The Max Foundation

PATIENT GROUPS AT RISING SUN 2016


THE MAX FOUNDATION

In 1997, The Max Foundation was established in honour of Maximiliano (Max) Rivarola and his legacy inspires our vision for a world where all people facing cancer live with dignity and hope.

What began as a grassroots organisation with several volunteers has evolved into a specialized team of more than 50 professionals. We carry out our work with team members based in Seattle at our headquarters and in many targeted low- and middle- income countries. Through the years, we have expanded our mission. The Max Foundation now has a full range of programs and services, all focused on serving people living with cancer around the world.

For more information about The Max Foundation, visit www.themaxfoundation.org

RISING SUN MEETING

Rising Sun, which was started as an industry-driven meeting in 2010, has now transformed into a community initiative of The Max Foundation implemented in partnership with leaders of patient organisations from Asia Pacific and South Asia. Through Rising Sun, patient leaders share best practices, and build their capacity and leadership skills towards achieving a shared-mission in serving people with cancer in their countries. More than 25 organisations, serving patients in 20 countries have participated in Rising Sun in the past 5 years, benefitting immensely from this platform.

Beginning 2015, Rising Sun’s orientation shifted from being “disease-focused” to “capacity building” focused. The decision is based on the recommendations made in previous Rising Sun meetings and survey findings to enable more patient organisations in the region to benefit from this initiative. Delegates include patient leaders from Max Global Network (MGN) patient organisations, as well as non-MGN patient groups, who would benefit from Rising Sun.

Rising Sun creates opportunities for sharing and learning among patient advocates in the region, bringing strength in numbers and commitment towards a common goal.

ABOUT US


THE RISING SUN 2016 STEERING COMMITTEE

Ong Mei Ching, The Max Foundation, Asia Pacific Region (Malaysia)

Viji Venkatesh, The Max Foundation, South Asia Region (India)

Pramod John George, Friends of Max (India)

Roderick Naval Padua, Touched by Max (Philippines)

Yoke Choon Yong, Max Family Society Malaysia (Malaysia)

Jung Ho Park, Zero Club (Korea)

Ebna Habib Md Shofiur Rahaman (Sohag), Bangladesh CML Supporting Group (Bangladesh)


The Max Foundation and the Rising Sun Steering Committee would like to acknowledge and thank our generous sponsors for their commitment and support for the patient organisations in the Asia Pacific and South Asia regions.

ACKNOWLEDGING OUR SPONSORS

MEETING REPORT - The Max Foundation...Ong Mei Ching, Regional Head for South Asia, Viji Venkatesh...

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