Africa & Middle East

The “Last Mile” to Treatment Access: Constantine’s Story

We enter the room of white coats. Cheerful banter and smiles are all around and it’s easy to overlook the frail man in the corner. His name is Constantine. He is from Inhambane, an area approximately 400km from Maputo, the capital of Mozambique.

A Long Journey

The distance itself is not so far but the journey is long – 8 hours by public buses and transport. Constantine is a security guard and a father of seven. He has not been feeling well for months now and has symptoms similar to malaria and bilharzia. Unsuccessful treatments at a clinic in his hometown have seen him referred to specialist physicians in the capital city. Presenting with a protruding spleen and increased white blood cell counts, he was finally confirmed to have the Philadelphia chromosome following a bone marrow biopsy. Constantine, like so many others around the world, has a rare form of leukemia called CML (chronic myeloid leukemia).

His Temporary Home

He has made the ward his temporary home and shares the space with four other patients. He does not get many visitors as the trip to Maputo is expensive and simply unaffordable for his family. Life outside the hospital goes on with news filtering in from his wife, children, and grandchildren. He will only be discharged once his white blood cell count comes down and his spleen has returned to normal size. Constantine is now one of 70 leukemia patients seen at the Maputo General Hospital.

The “Last Mile” To Treatment Access

Constantine’s Shoes

For many people facing cancer, the “last mile” in treatment access is a long, expensive, and recurring journey. But in Constantine’s case, even this journey may not be enough. Many low- and lower-middle income countries are celebrating access to second- and third-line treatments through Max Access Solutions, but Mozambique and at least 10 other countries still lack access to any effective medications. I look at the empty shoes next to Constantine’s bed and wonder how far they’ve already carried him to seek help. I can only hope they’ll be able to make the long journey back to Maputo over and over again, and that one day soon, there will be effective medication waiting for him when he gets there.

How You Can Help

At The Max Foundation, we work to bridge gaps in cancer treatment access with Max Access Solutions: our comprehensive patient-centered model for drug donation. Thanks to the generosity of our pharmaceutical partners, the drugs themselves are made available at no cost, but an enormous amount of work is still required to bridge the “last mile” and make them accessible to people in need.

Those “last mile” efforts take many forms. For the patients we support, it’s often a recurring journey to and from a clinic or hospital. For our partners and team members, the “last mile” takes place in customs offices and at ministries of health, on bus-rides to laboratories and site visits to remote clinics. Most importantly, our “last mile” efforts take the form of patient support; working to educate local communities, provide close emotional support, and reduce the stigma surrounding cancer.

With help from supporters like you, we can continue to grow these “last mile” efforts and bridge the gaps in treatment access for people in Africa and beyond. Together, we can realize a world where everyone can face cancer with dignity and hope.

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Join us in August for the Max Global Experience – Uganda!

Ready for an unforgettable summer?

This August, we invite you to join us for the Max Global Experience – Uganda to be part of the African patient journey by walking a mile (or 365!) in the shoes of African cancer survivors who often must travel for miles and even days to access treatment for their cancer.

As a team, we’ll walk the symbolic “last mile” at the source of the Nile river. This “last mile” echoes the many roads, steps, and miles we tread to bring cancer treatment to patients around the world – the most significant of which is the last mile, which ensures that the right medication reaches to the right patient at the right time.

Why Africa?

Africa in its colorful, splendid, chaos is home to over 1.2 billion people, speaking more than 1,500 languages. We live in climates that range from dry desert to humid jungle, yet despite the richness of the land, most people in Africa find themselves poor with relation to specialized healthcare. The outcomes of cancer patients reflect the deficiency of the current healthcare offering and these poor outcomes contribute greatly to the stigma: that cancer kills.

Where resources are available to treat cancer patients, it is often centralized to one specific center within a country or region. Travel to the specialized centers can take hours, up to days, a journey that takes an emotional, physical, and financial toll. It is this journey, which patients across the continent undertake with dedication and hope, that inspires our 2018 Max Global Experience.

Walk the “last mile” with us

In Uganda, overlooking majestic Lake Victoria, you will experience a connection with not only Africa but with the people that make her heart beat. You’ll hear stories from patients that once undertook journeys into the unknown, and are now leaders guiding others along the same path.

Together, we’ll see sights of beauty and sights of real down to earth life. We’ll share in storytelling, dancing, and more as we introduce you to leaders within our patient community and share in walking the “last mile” by their side at the source of the Nile. You’ll feel the roar of African drums in your blood and you’ll leave carrying a light, knowing that you made a difference not only in your own life but also to the lives of people in Africa who are living with cancer.

In 2017, we climbed a mountain. In 2018, join us to walk the “last mile” in Uganda! We will welcome you as a friend and we will greet you as family.

Join Us In Uganda!

Reflections Following the Loss of a Beloved Cancer Advocate

The passing of our dear friend, advocate and colleague Ferdinand, has shaken the close-knit global chronic myeloid leukemia (CML) community. CML, a rare form of leukemia that used to be fatal, now is treated with innovative targeted therapies commonly referred to as TKIs. There has been unprecedented global access to these TKIs and this has fostered the development of one of the strongest global patient communities for a rare cancer. Ferdinand, from Nairobi, Kenya, was a loved member of this community.

Since his passing earlier this week, questions arose regarding what happened, how come we could not provide more help, should we have done something else, is it all worthwhile if we cannot even save our close friend, are swirling in our minds. I would like to offer a few reflections as we close this difficult week.

We are not God. We are not limitless. What makes a good advocate is the belief that what is, is not necessarily what could or should be, and the perception that I, myself, can change the status quo. This is what drives us and makes us very successful advocates. We don’t usually see the limits until we smash our face on it, just like we did this week. Yet, chronic myeloid leukemia (CML), like all cancers, is a horrible, mean, awful disease, and we are not God. In the case of CML, Tyrosine Kinase Inhibitors (TKIs) are often able to keep it at bay, and people are able to live a pretty full life with controlled CML, but when left unattended it rears its ugly self out and there is no stopping it.

We are also not powerless. There are indeed things we can do that might have influenced the outcome for Ferdinand, yet perhaps we overlook them because they are so basic that we don’t notice them. Below I will attempt to list some of the challenges and opportunities, big and small, some specific to CML, most, shared in one way or another by any cancer patient in resource-challenged settings.

I firmly believe that the first and most important thing we need to continue to work on is access to innovative treatments such as TKIs for every patient, no matter where they live. Early, timely, continuous access to treatment. At The Max Foundation, and in collaboration with physicians and industry, this is what we are placing most of our resources on because it makes the biggest difference.

In this regard, we need governments to work with us. We need to be all on the same team. Time and time again we are fighting import regulations, impossible import taxes being imposed on the humanitarian aid of cancer medicines, and lack of engagement. If we can successfully demonstrate to governments the importance of treating cancer, we will be more likely to have their needed engagement. Ferdinand did a wonderful job these past years speaking for the cancer patient community in Kenya and developed a great collaborative relationship with his government. We need more Ferdinands, but to have more Ferdinands, we need to be able to bring in the needed treatment.

Access to innovative treatment needs to go hand in hand with access to diagnostics. Most countries in the world lack access to cytogenetics and molecular testing. We have made some progress bringing the innovative point of care GeneXpert technology to some of the countries. This still remains the most efficient and plausible solution. However, we are very far in access to mutation testing. Currently, we do not have a good solution for this. I view this as a problem with a high degree of difficulty issue to solve.

Access to safe and painless bone marrow aspirations (BMA), on the other hand, is an area we should be able to improve. This is a silent problem in the community. In many countries, the experience of having to undergo a bone marrow aspiration is a patient’s worse nightmare, and many develop heavy trauma. No sedation and the procedure might be performed by students; patients often tell me the person performing the procedure had to go in 5, 6, 7 times into the bone with the big needle because they could not get a sample. Terrible pain and pressure of someone penetrating your bone; remember, no sedation. Ferdinand, I know, needed a BMA and delayed it due to the fear and trauma of the experience in the past. This issue should be something we work on as a patient community because bone marrow aspirations are still needed at the most critical times in the treatment, especially when someone stops responding to the TKI for unknown reasons.

Adherence is key. We know, for CML treatment, an adherence of at least 93% makes a big difference. This means patients should not miss their daily dose of TKI medicine more than 1 or 2 days a month. The global CML community is a great example of leaders in this area. A well developed, impressive adherence survey led by the CML Advocates Network shed light on the complexity of treatment adherence. Good for us. Now, how about we look at the result of the survey to identify specific interventions we can take as a community that might increase adherence? I do not see why not.

Stem cell transplants, while possibly curative, are not an option for patients in most countries of the world. By the time transplant is our only option, we are out of options. No one should sell their family home and travel alone across the world to have a very risky stem cell transplant and risk dying alone and away from their families as a result of it. This is possibly one of the largest pieces of the global cancer divide and it will take a lot of time and resources to solve. A center of excellence for the treatment of CML in Sub-Saharan Africa is a dream I hope can come true someday.

Ferdinand Mwangura passed away this week in Nairobi, Kenya at the age of 40. He lived with CML for the past 13 years, many of which he dedicated to ensuring that the global community understands the needs of cancer patients in Kenya. Ferdinand leaves behind his wife Sereni, and six-year-old daughter. Today Ferdinand and Max finally met, their spirits, together with many other who passed on, will continue to guide our actions. Today we dust ourselves off and turn our grief into action.

Inspiration Abounds at Fred Hutch

This has been an incredible year. The Max Foundation not only celebrated 20 wonderful years of impacting and changing lives it also expanded its horizons. We are embracing new challenges and turning them into opportunities to change lives across the globe.

During my visit to Seattle for our 20th anniversary celebration, I was fortunate to join my Max team and a few special friends on a recent visit to the Fred Hutchinson Cancer Research Center. The warmth of the building and faces that greeted us on arrival was a sharp contrast to the cloudy, cool autumn weather outside. Noting the Nobel Prize Laureates showcased on the wall just confirmed that we were indeed in a center of excellence.

For a moment I am star struck as I recognize the face shaking our hands and welcoming us as that of the famous (to us, at least) Dr. Jerry Radich. Dr. Radich is not only is a medical oncologist who specializes in the molecular genetics of leukemia, he is a hero to many lacking access to treatment and support!

Dr. Jerry Radich shows our team around the Fred Hutch campus.

Dr. Radich gives us a quick 101 on what PCR is and how it works. Getting lessons from one of the masters of chronic myeloid leukemia stands out as one of the highlights of my year. We are also fortunate to be given a sneak-peak of current research projects the team is working on and in this, we see a glimpse of the future, we have so much to look forward to!

Learning about cancer diagnostics from a master!

Following the crash course on PCR, we find ourselves walking down the corridor towards one of the laboratories, I am aware of the personal touches by staff as photos of their families, children and babies adore the bulletin boards and doorways. These are people who work day and night to create a better world for others, perhaps one day even for a face in the photos.

We enter the lab just in time to see the actual PCR diagnostics theory in practice. Sample and reagents are carefully placed in the cartridge and then placed in a gigantic GeneXpert machine, and a result will appear in 20 minutes. While the machine is doing its magic, we move to another lab where the incredible Spot On CML tests are being conducted. Earlier this year, Fred Hutch, together with The Max Foundation, launched a program in which CML diagnostics could be done for patients from across the world using only a few spots of dried blood. Yes, a drop of blood, shipped over days, even weeks, from the most remote places in the world is received here at The Hutch. RNA is subtracted and with a few “magic” touches the sample is ready for a PCR. Many lives are changed due to this project, these people and the innovation and technology that they drive.

Touring the lab felt like peeking into the future of cancer care.

Seeing the dedication and passion that drive these scientists I cannot only believe that we will one day live in a world where cancer is just a word and no longer a death threat.

As I exit through the doors of The Hutch I am hopeful, excited and optimistic to be not only part of a team that works towards positive change but also part of a global community that is striving to enable all patients to face cancer with dignity and hope.

With Love in South Africa

Between all the emails, paper and meetings and the general rush of everyday life, it can be often neglected to reflect on the actual motivation for the efforts and input we make.

On a recent dry and hazy morning my colleague, Geraldine, and I find ourselves lost in one of the neighboring townships. In South Africa we are very aware of personal safety and in this situation one could easily decide to return to the safety of home, giving up on the set mission. We are however determined and decide to stick to our commitment in meeting with the Childhood Cancer Organization (CHOC) at the pediatric oncology ward of George Mukhari Hospital. Today, we are connecting with the young patients and their families and handing out the knitted hats made “With Love in Every Stitch”.

This will be Geraldine’s first contact with patients and partners since she joined The Max Foundation this spring. She expresses her concern for how emotional it will be to face the children and parents later in the day.

We receive a warm welcome at the hospital and make numerous new friends as we navigate our way to the ward. This is no small hospital, in fact it is one of the larger teaching hospitals in South Africa, but still we are received as family.

The matron from the pediatric ward appear in the doorway dressed in brilliant white as the angel she is. As Antonella from CHOC makes the introductions we become aware of a buzz in the ward. Tiny faces look at us between the rails of the cribs and doorways.

We move from bed to bed, engaging with the parents, giving each child the opportunity to find the hat they want and then we came to the littlest one. She is only six months old and currently facing stage four Neuroblastoma. We take turns in holding this little one, adorned in her beautiful new white hat, eyes smiling at all the attention and I know that this is the reason why we commit every day to improving the lives of those living with cancer.

We visit the isolation rooms. Cleaned hands, and mouths covered, we enter these quite spaces with our bag of hats. We spread the hats on the bed for the child to select one. For a moment, there is an option for that child, even if it is only the personal choice of the color of a hat.

At the last bed we cover the white sheets in pink and purple, our experience thus far indicates that pink and purple are girl colors. This girl however is not impressed with pink or purple, yet her eyes light up when we produce the brightest, multi colored hat, this is her hat! I take out my phone to show her on the camera how pretty she looks and as I lean in to share the screen something catches my eye. Hiding beneath her bedsheets I find our dear friend Maximo!! He made his way here as a donation to CHOC, giving comfort to this young brave girl. As we read her colorful book, with her colorful hat I can only wish her a colorful life.

As we make our way back, Geraldine reflects on the visit. She notes how energized and grateful she feels, how amazing it is to be associated with The Max Foundation and the opportunities we each have to change lives. I know this feeling so well and this is why I, too, look forward to the emotion and engagement that is inspired by visits with patients.

Knit Hats for Kids

Stories of Dignity and Hope: South Africa and Thailand | Maximize Life Campaign 2016

Throughout the month of October, as we celebrate the Maximize Life Campaign, we’ve invited team members to share stories of dignity and hope from patients and caregivers. We share these stories so they may inspire you to raise your voice, fight the stigma cancer carries, and offer hope to all. Read the previous post in the series.

Ka from Cambodia

Shared by the Asia Pacific Team

When Ka came to Thailand for access to treatment, she had the chance to join the MaxSmiles patient group meetings. Ka started to dream about having her own meetings and soon found support from Dr. Mary Cluck, an Australian volunteer working with Cambodian CML patients. Ka stepped up and called the patients one-by-one to invite them to their first patient meeting.

On January 11th 2013, Ka’s first patient meeting was underway! We offered MaxSmiles T-shirts and bags to all in attendance. There was a patient education session from Dr. Mary (as they call her in Cambodia) in Khmer language, and there was Q&A session. Lunch was traditional Khmer food, prepared with love by Ka’s mother. Ka’s friends even sang a song they wrote which became the group theme song! On that day, Max Miracle was founded in Cambodia.

As I always say, Ka never gives up! She does anything to make her dreams come true. She made history with Max Miracle by being one of the first patient groups for CML patients in Cambodia!

The Memorial Wall in South Africa

Shared by the Africa & Middle East Team

During the 2010 Maximize Life Campaign, The Max Foundation in South Africa created a message board within one of the largest libraries in Pretoria. The objective of the wall was for members of the public to write messages of encouragement and hope to those living with cancer. Following the campaign, the messages would be distributed to cancer patients and caregivers and posted on The Max Foundation website – spreading hope and decreasing isolation.

Spending time at the wall I soon realized that a secondary objective was reached. People were not only writing messages, but they were openly engaging in dialogue with those around them, all sharing stories about cancer. The wall was no longer a static receiver of messages, it had become an active encourager of cancer conversations amongst strangers. Behind every short message was a longer story to be told, people want to talk about cancer. We are all affected by cancer, and platforms such as the Maximize Life Campaign not only allow us to gather as strangers for a cause, but leads us to being friends in victory.

Around the World for Max’s Day!

It was an amazing 24 hours! To celebrate Max’s birthday anniversary, we went around the world through Facebook Live to visit each regional office, meet special friends, and learn how each of us contributes to caring and supporting people facing cancer. Never before has our team felt so close and united.

Watch each of the six Facebook Live recordings below to celebrate this brilliant team of advocates!

Live in Singapore

Our dear friend and CML patient, Tony Leo kicked things off on October 19 in Singapore! Tony shared a bit about his journey and experience with cancer. He also gave a special performance of his song, You, dedicated to Max’s legacy through The Max Foundation.

Live from Malaysia: Celebrating Max's Day!

We're traveling around the world with Facebook Live! First up, Tony Leo, a CML patient and musician, shares the story behind the song You and gives a special performance live!

Posted by The Max Foundation on Tuesday, October 18, 2016

Live in Thailand

Next we head to Thailand, where our Asia Pacific team members interview a patient who gives back to the MaxSmiles community by cooking large servings of delicious Thai dishes for patients. It’s a testimony of the power of hospitality and kindness.

Live from Thailand: Celebrating Max's Day!

Our Thailand team shares how hospitality and kindness are simple but powerful ways to make a difference in the lives of people facing cancer.

Posted by The Max Foundation on Tuesday, October 18, 2016

Live in India

Over in India, our South Asia regional office join in the fun with a wonderful skit showing the patient journey through cancer. Community is key when you’re faced with a cancer diagnosis, and the South Asia team is creating committed networks of patients throughout the region.

Live from India: Celebrating Max's Day

The Max Foundation team in India joins us on Facebook Live to share how people in India are facing cancer with dignity and hope. In the journey of life, no one expects to get cancer – but that doesn't mean the story is over!

Posted by The Max Foundation on Tuesday, October 18, 2016

Live from Kenya

In Kenya, Lucy represents our Africa & Middle East region and is joined by patient advocates who have gone above and beyond their cancer diagnosis in order to help others face cancer with dignity and hope. They also brought out a beautiful cake decorated by a local patient!

Live from Kenya : Celebrating Max's Day!

From our Nairobi, Kenya team, we hear how cancer patients are combating stigma and raising their voices to support and care for everyone facing cancer!

Posted by The Max Foundation on Wednesday, October 19, 2016

Live in Argentina

Our Latin America team was represented by Vicky and Melisa in our Buenos Aires office. Together, they shared their love to all in the region and around the world. They also led us through a special mindfulness exercise to focus our attention and energy!

Live from Argentina: Celebrating Max’s Day!

Our Latin America team in Buenos Aires shows how they care for patients in the region by leading us in guided mindfulness. They also share a tour of the office and how they offer support and care to others.

Posted by The Max Foundation on Wednesday, October 19, 2016

Live in the USA

Finally, we cap off our very full day with a celebration in our Seattle headquarters. Team members and friends gathered to watch the live streams of the day and Pat took to Facebook Live to reflect on Max’s legacy. We also revealed the winner of this year’s Excellence in Patient Advocacy award – congratulations to Viji Venkatesh, South Asia Region Head!

Live from Seattle: Celebrating Max's Day!

We visit The Max Foundation headquarters to join the celebration with friends and team members! Pat offers her thoughts on the day and reflects on the legacy of Max. She also awards one team member with the Excellence in Patient Advocacy award!

Posted by The Max Foundation on Wednesday, October 19, 2016

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.

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.

The Maximize Life Campaign: Africa and Middle East

blogpost401_1This year, like past years, 16 patient support groups in Africa and Middle East have joined the Maximize Life Campaign with enthusiasm and excitement. All the groups in Africa welcome back our friends from Sierra Leone who inspired us all with their resilience in the face of the Ebola epidemic that touched their country.

The month of October has become synonymous with a month where advocacy, disease information, and the fight against the stigma of cancer is at the frontline in the region. Many of the campaign events have invited local medial to increase the reach and visibility of the local support groups. Members of the groups have used their social media platforms to let the world know they are alive and living well with CML because they have access to treatment.

Patient leaders from Africa are taking to the airways during Maximize life to call on their local governments to get involved and increase access to treatment and monitoring tests for all cancer patients. Support group members are openly sharing their stories. Members want to educate their community on the importance of early cancer detection and treatment. They especially want to show that it is possible to be a productive member of society when one has access to treatment.

Follow the Patient Journey

Join Gershon as he shares his journey from cancer patient to advocate and leader.
See Gershon's Journey