Updates from Across the Globe

It’s been a busy spring at The Max Foundation! Along with the major update to our new site, there are some great stories to share from our global network.

India’s GIST Meetings

gist-meeting-india

Over the past few years, the India team has been concentrating on having gastrointestinal stromal tumor (GIST)-focused meetings throughout the country. Quarterly meetings have been happening in Mumbai gist-art-therapy-indiasince 2013, but this year included the first GIST meeting in Hyderabad. GIST patient groups were started because the large number of CML patients overshadowed the specific needs of those facing GIST.

Along with presentations from medical professionals and Q&A sessions, people also participated in an art therapy workshop – some enthusiastically and some with a little coaxing – so patients and caregivers can open up and empathize with each other. As our team in South Asia can attest, these bonds create lasting friendships.

A Picnic with Malaysia’s Max Family

max-family-malaysia

Max Family, a patient support group in Malaysia, decided to make the best of their nice weather and took their next patient meeting outdoors. Max team member, Waheeda, shares how the day unfolded:

“I could see almost everyone wore a bright smile, what a wonderful start to the Sunday morning! Not only that, everyone brought something with them, from the picnic mat to yummy Nasi Lemak. How lovely to see everyone is trying their best to make it the best day.”

The picnic was filled with good food and stories, as well as plans for raising cancer advocacy throughout Malaysia.

Storytelling Workshop in India

IMG_9959We saw the beginning of storytelling workshops where patients, caregivers, and advocates gathered to learn the art of telling their story. India Region Head, Viji, shares what happened:

“The intimate setting of the smaller groups helped to do away with any feelings of shyness or hesitation. Each speaker had been heard before and received feedback from familiar team mates. The group representatives spoke and shared from their hearts and what was said resonated in one way or the other with everyone in the audience.”

New Release: My PCR and Maximize Life Executive Reports

We are sharing our executive reports for our many projects and campaigns. These reports give the story behind our efforts to raise awareness, build community, and help people facing cancer around the world. Our latest reports feature the results of our My PCR and Maximize Life campaigns. Read these reports to learn why we believe in raising awareness and advocacy around the world for people facing cancer.

View Our Executive Reports

Be Among the First to Tour Our New Website!

Welcome to our new website!

At The Max Foundation, we have declared 2016 as the year we ‘leap forward for impact’. With that in mind, our first milestone is the launch of our brand new website. Redesigning our website has been both a strategic and soul-searching exercise that we have done all for you. We see our website as a platform for you to engage with us as partners in our mission.

We can’t wait for you to see the website for yourself: Explore Our New Website.

These new features were designed especially for you…

  • If you look at only one feature in the entire website, we hope it will be our interactive global map. Our map is the backbone of the site and shows the breadth of our collective impact.
  • We tell you WHY we need you to join with us by sharing statistics on how people living with cancer in low-and middle-income countries are disproportionately impacted by the global cancer epidemic.
  • We share WHAT we are doing with your support to help people facing cancer around the world; from treatment access to education to advocacy.
  • We show you WHERE your collaboration is already making a difference within our regional pages: Africa & Middle East, Asia Pacific, Latin America, and South Asia.
  • And we invite you to Get Involved in our efforts to improve global access to cancer treatment, care and support by creating your own fundraiser, joining Chai for Cancer and giving to The Max Foundation.

This is your website, just as much as it is ours. It is for your friends and ours, all of whom are touched by cancer. The Max Foundation’s website will be growing, evolving and getting stronger all the time. We hope you will bookmark the site so you can visit often. Enjoy your website tour!

In partnership,
All of us at The Max Foundation

Light a Candle on March 9th to Honor Max

March 9th marks a somber anniversary; the day Max lost his 3 year battle with chronic myeloid leukemia (CML). For those of us who love Max, who either knew him then or who know and love him now, this will always be a day of sorrow. The words that come to mind are words such as ugly, unfair, impossible, and the feeling is one of emptiness; a whole in one’s heart. Max was a real person, a beautiful young child, whose encounter with cancer was nothing but a tragic episode.

Yes, we do so much in his memory; his spirit lives through those who are alive today, and I personally have found a calling I never would have envisioned. But don’t get me wrong; I would give it all up in a heartbeat to have Max back, to have taken away his pain and to see him today.

We do what we do every day because we can, and words cannot describe our gratitude for the opportunity. We have indeed built a magnificent global movement in his honor, and our commitment to access to treatment, care and support, and our vision or dignity and hope in the face of cancer is stronger than ever. But as anyone who has lost a young dear one knows, the hole in the heart remains. We acknowledge it and accept that it will always be there, and we learn to live with it.

And today, we pause to light a candle and say a prayer. I would like to invite you to light a candle today, for Max and for all the friends and loved ones who are no longer with us. Let’s be together through the power of social media by leaving a message in the guestbook, sharing our love for each other and let our togetherness be a reminder that cancer didn’t win. It made us stronger and more determined, for Max and for all those who are no longer with us.

Thank you,
Pat Garcia-Gonzalez

Celebrating our Max Global Network Partners!

Each year I am humbled by the extraordinary work and dedication of our 68 Max Global Network partners, hailing from over 50 countries around the world, that tirelessly dedicate their time and resources to improving the lives of people living with cancer worldwide. I would like to take moment to acknowledge just a few of their achievements in 2015 and congratulate them on their continued efforts to ensure that the needs of people in their communities who are impacted by a cancer diagnosis are heard.

Here are just a few of the highlights from 2015:

Maximize Life Campaign

This year, over 50 Maximize Life Global Cancer Awareness events took place throughout Latin America, Africa, Asia, and the Middle East. In total, 42 partner organizations hosted events in their local communities that provided cancer survivors and caregivers a platform to share their stories of confronting and overcoming the fear and pain of a cancer diagnosis.

Maximize Life Essay Contest

72 brave individuals shared their personal stories of facing cancer by submitting their stories in writing to the 2015 Maximize Life Essay Contest. We were overwhelmed by the quality and power of each essay! A panel of judges selected a winner for each language (English, Spanish and French), and the winners selected a Max Global Network partner to award US$500 in addition to a personal award of US$300. Read the essays and be inspired!

9/22 World CML Day

Over 25 Max Global Network partners participated in the My PCR initiative, “Treat Your Physician on World CML Day.” Partners visited physicians at their local clinics to deliver tasty PCR-themed treats and World CML Day posters. Partners thanked these physicians for their support and spread the word about the importance of PCR in the monitoring of chronic myeloid leukemia (CML). If your organization works with CML patients and you are not already a partner of My PCR, we encourage you to visit the My PCR website for more information!

The Max Foundation is excited to embark on a new year of initiatives and growth with our Network partners, and we look forward to collectively working to improve the lives of people living with cancer worldwide. Keep up the good work!

Stories of Survival in Africa

Thousands of patients are diagnosed with chronic myeloid leukaemia (CML) annually around the world. CML, like any other cancer, does not discriminate. It affects people from all regions and walks of life. However, unlike many other cancers, CML has an amazing story due to advancements made in its treatment in the last decade. It was only 15 years ago that a patient newly diagnosed with CML would have a prognosis of survival of less than 5 years with the treatments available at the time.

The story of CML goes hand in hand with how lives can be changed even in remote areas of the world once patients have access to the latest treatment, regardless of affordability. Each one of the three cancer survivors and advocates featured in the video want you to know that life and survival is dear to all, regardless of where you are from. They tell their individual stories of survival and are able to share it with us because they were given the gift of life when they so needed it. Now, they are able to give of themselves to other patients. Today we will be sharing the powerful stories of how access to treatment, especially in remote areas, can change the course of the relationship between disease and patient. We invite you to listen to these stories and call on you to join us and urge your respective governments to lay the pathway for access to treatment for all cancer patients and give the gift of life, hope and dignity that every patient deserves.

Sharing My Story for World Cancer Day

Today’s World Cancer Day Guest Blogger is P. Sangeetha, a cancer caregiver from India and active volunteer with the patient organization Friends of Max. P. Sangeetha is an inspirational advocate who is not afraid to share her story, and in 2015 she was the first place winner of the Maximize Life Essay Contest. Read and share her story!

“CANCER” what comes to your mind as you read this six letter word? The five W’s, who, what, when, where and why comes to our head. In my life, who? Was my father, when? 2004, where? In his blood and why? The million dollar question whose answer we are still searching for.

When CANCER struck we were first so afraid because of the stigma the world has created with this word. Initially we thought it was going to be a lonely battle but we found a family the Friends of Max who befriended us when we needed a helping hand. This is one of the toughest groups I have seen. It is a group filled with warriors and their care givers.

What is cancer? Cancer is not just growth of cells; it is the growth of inner strength. I saw that in my father. He took the cancer, the power of the cells into his own hands and brought them under control.

The world makes it sound like cancer is terrifying, but it is not true. You can befriend your cancer cells. Yes, they are your foes, they need to be kept under control but you can still control them. A positive outlook in life gets a positive result.

Can-cer means can survive. Each warrior is facing their own battle but cancer in the name itself says can survive. You believe that you will get through this rough phase, you will.

The care givers are also part of the battle. They need as much mental strength as the warriors. Like cheer leaders in a basketball game, the care giver support the winning team, the captain, into winning their battle.

I have attended many meetings conducted by the Friends of Max, they all send the same message, to stay strong and to believe. To believe in yourself, in your doctor and in your medicine.

Cancer is not as terrifying as it sounds. It just seems that way, but you can win the battle against it if you follow the rules and stick to your game. Your game must be, taking care of yourself, taking your medicines on time, listening to your doctors, cooperating with your care givers and facing everyday as a challenge.

My message to you on world cancer day is, the C for CANCER can be inverted and made into a sad face or into a smile. Choose the smile. Face the big C with a bigger C, courage and take care.

Can a Blood Test be an Incentive for Education?

For many patients, there aren’t many opportunities for them to learn about their disease directly from experts. So when the opportunity to hear from a hematologist at Naresuan University Hospital in Thailand, we were excited to maximize the event.

Naresuan is a teaching hospital regarded as one of the key hospitals in northern Thailand, and our contact, Dr. Rawisut serves as a resident physician at the hospital in charge of multiple myeloma patients. He expressed a strong desire for his patients and other patients in this area to gain a deeper understanding of their disease. Talking to him over the phone, he gave us an insightful observation: patients and caregivers in the region are not well-educated and can be indifferent with following up with their disease. A major concern is that people in this area are not serious on doing blood test due to financial difficulty.

Dr. Rawisut came up with a brilliant idea: he asked if we could perform blood test for any patients in attendance. Patients would receive the results after the education portion of the event so that they may fully understand the importance of these blood tests. I was so happy to hear about this passionate physician who is so thoughtful for his patients.

On December 3, 2015, we hosted the multiple myeloma workshop and opened the event with registration and blood test done by Dr. Rawisut. We gave away MaxSmiles bags (MaxSmiles is the local patient support group) and The Max Foundation wristband. The environment was full of positive spirit. Dr. Peerapol, the head of internal medicine department, spoke a few words and expressed his gratitude for The Max Foundation and their emotional and psychological support for patients. He is also a fan of our MaxSmiles newsletter!

The event proceeded with the educational session led by Dr. Rawisut. He gave a simple yet knowledgeable presentation and had two patients share their treatment experiences about multiple myeloma treatment. One patient was treated with a bone marrow transplant, the other with Revlimid®. The educational program also involved okessays.com project. The goal was to show the differences in treatments and what criteria one should consider when deciding on a treatment course. It was a powerful presentation since it came from the real experiences of patients.

After the event, Dr. Rawisut shared the blood test results for each patient and gave them suggestions for taking care of themselves. I am proud to say that this was the best multiple myeloma workshop ever in Thailand. I witnessed the dedication of Dr. Rawisut and the healthcare providers at Naresuan hospital. We collaborated well as a team. Lesson learned from this workshop is that heart full of love and compassion can do anything under the Sun. If we have sincere heart to do good deeds, we will achieve it and achieve it successfully.

Of Gratitude and Community

Celebrated across the United States on the fourth Thursday of November, Thanksgiving is not just a holiday, it is a time for family; a time for reflection and gratitude; a moment to take stock of what we have. As all of us prepare to either travel back home or to receive our family members in our homes, we are reminded that the most valuable thing we have is each other.

At my home as in many homes, it is a tradition to go around the Thanksgiving dinner table sharing what we are thankful for. For me, I am thankful for this most extraordinary journey which has brought each and every one of you into my life. On this holiday, I am most grateful as I think of you, my friends, my partners, my worldwide family.

On behalf of the team at The Max Foundation, we would like to take this opportunity to express our deepest gratitude for your support and your commitment. You are our inspiration and together we will continue our joint efforts to ensure that any person who has to face cancer can do it with dignity and with hope, no matter where they live.

I would like to wish everyone a safe and peaceful Thanksgiving. May your home be filled with love and laughter, today and always.

Pat

The GIPAP Program Detailed in the ASCO Journal of Global Oncology

GIPAP Publication in the Journal of Global Oncology.

GIPAP Publication in the Journal of Global Oncology.

Last week ASCO launched the inaugural issue of the Journal of Global Oncology. This new open access, online journal focuses exclusively on cancer research, treatment, and the delivery of care in middle and low resource countries.

Among the first seven articles, published on September 23rd, are original research, commentaries, and review articles, including a special article looking at the Glivec International Patient Assistance Program, authored by our CEO Pat Garcia-Gonzalez, MS, and others.

We asked Pat a few questions about the article to get a behind-the-scenes glimpse into the mission and purpose of our treatment access program. Read on to hear her thoughts.

Josué: How did the publication come about?

Pat: I was encouraged by one of the members of our Advisory Board to develop the manuscript, given the role that The Max Foundation’s partnership with Novartis around access to imatinib through the Glivec® International Patient Assistance Program has played in changing the paradigm around access to innovative oncology treatment in low-and-middle-income countries. I felt it was very important to produce the manuscript in partnership with those who have been involved in this program from the beginning, thus the choice of my co-authors.

The paper describes in great detail the GIPAP program, and, most importantly, The Max Foundation’s model of patient support and tracking, which is key to the success of the program. A company may make their drugs accessible to patients, but if patients are not able to navigate the program – if there are no support services for patients and for treating physicians – few would actually be able to access the drug. This is especially important for treatment regimens like Glivec where patients must stay on the therapy indefinitely.

Josué: Why was it important for you to tell the GIPAP story?

Pat: The GIPAP program – its model, scope, and impact – are extraordinary in many ways. GIPAP has been and continues to be the most far-reaching humanitarian drug access program for an oncology product in history. The GIPAP model provides a new paradigm in access to treatment programs and is a model now broadly adapted to access programs for any targeted therapy. As program administrators, we track the treatment of each patient, one at a time, in partnership with his or her treating physician. We have operated in 80 countries, approving the delivery of more than 3 million monthly doses of the drug and working for 14 consecutive years in partnership with 1,500 hematologists and oncologists, as well as the program sponsor.

The early launch of the GIPAP is also extraordinary; the program was launched almost simultaneously with the approval of the drug by the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA), so patients in low-and-middle-income countries had access to this innovative drug at the same time as patients in the Western world. This approach was quite unprecedented and has gone a long way towards building a more equitable world.

Josué: What is the main thing you want people to take away from this publication?

Pat: The first message I want people to understand is that it is actually possible to safely treat patients with a targeted therapy in all regions of the world. Additionally, that it is also possible for an international non-governmental organization (INGO) to partner with a pharmaceutical company for the benefit of patients. And finally, that with the right model, it is possible to maintain patients with chronic conditions on therapy for many years, avoiding drug diversion and other challenges that have plagued the world of international humanitarian drug donations.

Please don’t get me wrong; I am not saying it is easy. At this moment in time, for instance, we are caring for 33,000 patients on treatment, one at a time. You have seen the extraordinary dedication of our team, and I can assure you it takes an equally dedicated team at Novartis, and the most hardworking and dedicated treating physicians, some of whom today actively oversee the treatment of more than 1,000 patients. But it is possible with the right commitment and with the right goals in mind.

I also want people to know that access to treatment can be a catalyst for strengthening the healthcare system. GIPAP has been pivotal in the introduction of diagnostics, training of more healthcare providers, development of systems, and inspiring the formation of patient associations. I have observed that in the field of global health, stakeholders are often ready to provide resources to strengthen the healthcare system, provide training, and so on, but reluctant to provide access to the drug, giving as an excuse issues such as lack of diagnostics. Well, there is no better incentive to strengthen systems than the availability of the treatment. I want people to understand this key point.

The last point I would mention is that a drug access program requires a long-term vision; it needs to be understood as an investment in a community and a partnership with each patient. The Max Foundation is poised to work hand in hand with those who are prepared to step-up and make the investment, and I can promise you that everyone, and especially the patients, will step-up with them.

Josué: Thanks for sharing the background on the publication, Pat. The article serves to showcase the many lessons learned from GIPAP and the broad applicability for future treatment access solutions. Read Pat’s article here and find other articles featuring global oncology on the ASCO Journal of Global Oncology site.

Congratulations to the 2015 Maximize Life Essay Contest Winners!

Essay winners Saliou Diop, P. Sangeetha and Jozina Pacheco Gómez.

Essay winners Saliou Diop, P. Sangeetha and Jozina Pacheco Gómez.

Have you visited the 2015 Maximize Life Essay Contest webpage recently? The Max Foundation is honored to share that the 2015 Maximize Life Essay Contest winners are officially released! Three winners in total, one for each of the French, English and Spanish categories, were selected by a panel of highly esteemed judges within the global health community. You may view the complete panel of judges here. We are exceedingly grateful for the valuable time and input provided by each of the judges. With 71 meaningful and authentic personal stories submitted, it was no small task to select only one winner for each language category!

We are also overwhelmingly grateful and proud of the 71 brave individuals who came forward to share about their personal journey with cancer. While we may feel from time to time as though we don’t have enough power to affect change as broadly as we might like, we all come armed with our story, and when it comes to inspiring others with hope, understanding and compassion our stories are powerful tools indeed.

So, without further ado, the 2015 Maximize Life Essay Contest winners are:

In addition to each winner receiving a US$300 grant, The Max Foundation is also providing a US$500 grant to the Max Global Network partner organization of each winner’s choice in an effort to strengthen the work that they are doing within their communities to better support people living with cancer. The following partners were selected by the three winners to receive the grant:

  • A.G.I.L du Sénégal, Senegal (French-Language Winner)
  • Friends of Max, India (English-Language Winner)
  • Esperantra, Peru (Spanish-Language Winner)
  • Congratulations to the winners and partner group awardees! And congratulations to all of the storytellers shared their personal journey. Your words will continue to inspire and bring hope to all who read them.

Browse essays from this year’s essay collection.

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