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.

Donate Today!

Chai for Cancer USA: Raise a Cup Together

Launched in 2015, Chai for Cancer USA raises funds to provide treatment access for patients in India. The campaign’s inspiration and namesake come from our own Region Head for South Asia, Viji Venkatesh, who started the original Chai for Cancer campaign in India one year earlier.

For the past three years, supporters across the United States and in Canada have volunteered to host Chai Adda (tea parties) fundraisers at their homes, or have raised a cup virtually by donating online. No matter how people have gotten involved, their efforts have all contributed much-needed support to people in India facing a cancer diagnosis.

Pramod George – father, husband, media professional, and CML survivor – is one such person, and this is his story.


A Routine Blood Test

Dengue fever was knocking at various doors in and around town and the concern prompted me to visit my doctor, a close family friend. I had no symptoms, but just to be safe, he recommended I visit a local clinic for blood and urine tests. When I took the reports back to my doctor, he was confused. My white blood cell count (WBC) was 26,100 – far too high for a healthy adult (4,500 to 10,000 is normal). He suspected the report was faulty, advised some medicines, and told me to take another blood test from a different clinic after two days.

It Might Be Leukemia

The next report showed my WBC at 29,900. He recommended more medicines – this time for a week – and told me we’d have to do further studies if my WBC count did not come down. When the next test showed a 28,300 WBC, he told me to go see a specialist, Dr. M. B. Aggarwal. I asked my doctor what might be wrong and – though he couldn’t yet confirm it – he suspected I might have leukemia.

A ‘Good Type’ of Cancer

After Dr. Aggarwal reviewed my case, he recommended a bone marrow biopsy and I agreed. When the reports came back he congratulated me on having a ‘good type’ of cancer. By that, he meant a cancer for which medicine was available. I was diagnosed with CML. For treatment, he prescribed a generic drug called VEENAT and gave me a list of suppliers that would help get the medicine at a reduced price.

Sharing the News

I broke the news at home that night. My family was all set to cry. I told them that I had overcome the bad part of the news the moment the doctor had congratulated me. I asked them to be strong for me so that I would cope. Whatever illness I had was a gift given by God to me, similar to my life. I did not come into this world by choice, so I would not leave this world by choice either. Like every hair on my head is numbered in His book, so is my every day.

A Second Gift

Once, while discussing some financial issues with Dr. Aggarwal, he asked me if I was getting any support for my medicines from my place of work. When I said no, he asked me to get my salary certificate with a letter from my company saying they weren’t supporting me. He said with these two letters, along with my photograph and a few other papers, I would be able to get the original medicine, GLIVEC, free from Novartis through The Max Foundation. I reconfirmed this with him several times before getting the papers ready.

I had to go to The Max Foundation only once. I met Ayesha on my visit there and soon an email came as a blessing, stating their approval. If getting diagnosed with CML was God’s first gift, this was the second.


If you’re interested in supporting patients like Pramod, please consider participating in Chai for Cancer USA. You can get involved virtually by making a donation online or gather with friends and host an adda of your own!

‘Spot On CML’ Comes to Nepal

Spot On CML, our new diagnostics project with Fred Hutch, is life-changing and powerful in its impact. Patients who would have had to go without lifesaving treatment because of an inaccessible and expensive test can all of a sudden gain access – a seemingly insurmountable hurdle done away with.

A true example of the mountain coming to Mohammad. And speaking of mountains, it is from the erstwhile Mountain Kingdom of Nepal, that this post comes. Specifically, from B. P. Koirala Memorial Cancer Hospital where I paid a visit in January of this year.

A Solution for B.P. Koirala Memorial Cancer Hospital

Kabitha’s Spot On CML card

For a while, my team and I had been wondering about offering Spot On CML in Nepal, since our Max Access Solutions treatment collaborations were welcoming new patients from there, and there have been challenges in sending samples to be tested in labs outside the country. So we approached Dr. Jaya Shreshta of the B.P. Koirala Memorial Cancer Hospital to find out if he and his institution would be interested in participating.

Dr. Jaya showed keen interest and was extremely happy to receive the kit from The Max Foundation’s HQ team, which happened to coincide with the time of my visit to the hospital.

While I was in town, Dr. Jaya organized a small meeting with his team where he shared the details of the project and the contents of the kit. The excitement was palpable. Then, during a later meeting with the directors of the institution, we were able to bring to the table various issues that needed to be ironed out before the project could be launched. Even as we sorted through the logistics, Dr. Jaya was very keen to begin the project and in my presence enroll the first patient!

Nepal’s First ‘Spot On CML’ Patient

Kabitha has blood drawn for the Spot On CML diagnostic test

To that end, meet Kabitha – a 27-year-old woman who has been newly diagnosed.

I was able to counsel Kabitha with the help of one of our senior volunteers here. We explained to the young lady and her caregiver how this test would enable her diagnosis to be confirmed as early as possible – and at no cost – so that she may begin her life-saving treatment.

We encouraged Dr. Jaya’s team to make sure this would be done every time with every patient. The whole procedure was explained to the pathology team and with the help of the instructions in the kit, the patient’s blood was drawn and saved on the card in the four given spots. I am glad I was there, able to play a part in implementing Spot On CML in Nepal.

Increased Access & Improved Outcomes

At the time of my visit, Kabitha was the very first patient in Nepal to be tested through our Spot On CML collaboration. Today, just a few months later, 35 patients have been tested through Spot On CML, all under the watchful care of the team at B.P. Koirala Memorial Cancer Hospital. What a gift and what an impact this life-saving collaboration with Fred Hutch!

Learn more about the Spot On CML initiative!

 

What does treatment access mean to you?

When someone facing cancer gains access to treatment, they gain access to life. With oral chemotherapies, access to treatment isn’t simply a one-time occurrence. Each and every day, tens of thousands of cancer patients take life-saving medication they receive free-of-cost – all thanks to the unseen work of partners, donors, and Max team members.

Treatment access means so much to us at The Max Foundation because we understand what it means to patients. We know so many people living beyond their cancer diagnoses because of the access we are able to provide. We know the privilege of watching patients grow, get married, start careers, and give back to their communities. While treatment access means the world to us and our patients, there are many who do not realize the freedom, joy, and dignity that comes with access to a daily dose.

Words to live by

The Max Malaysia team recently attended the Malaysian Society of Haematology (MSH) Annual Scientific Meeting. Surrounded by healthcare professionals, patient advocates, pharmaceutical organizations, and more, we thought it was a great opportunity to hear what people gain when they have access to treatment.

So we created a fun way for people to share their thoughts – hundreds of buttons with different answers to the question, “What does treatment access mean to you?” Attendees selected (and sometimes wrote out) words that reflected their thoughts and then pinned them to our display. Watch as delegates at the meeting shared their responses.

What about you? What does treatment access mean to you and your community? Share your words in the comments below!

This experience with our new friends at the MSH Annual Scientific Meeting showed that everyone has a role in treatment access. We were proud to represent Max at MSH and to showcase the ways treatment access empowers patients around the world.

A Partnership Bound by Mission, Innovation, and History

At The Max Foundation, we believe in the power of individuals to make a difference, especially when it comes to health equity. Over the years, we’ve been privileged to work alongside some amazing people in both the public and private sectors – people who have moved mountains to help patients around the world face cancer with dignity and hope. We also believe in working closely with organizations whose mission and values align with our own.

At first glance, Global Fiberglass Solutions might seem an unlikely partner for The Max Foundation. However, when you look at our shared values – innovation, sustainable solutions, and global citizenship – it makes perfect sense. In fact, our partnership extends beyond just our values.

Global Fiberglass Solutions and The Max Foundation actually shared common leadership at our inceptions. The late Ken Weyant, one of our founding board members, was a visionary who understood the need to close the cancer divide between higher-income and lower-income countries. At the same time, he began a quest to recycle landfill-bound wind turbines into new products for the greater good. Since our respective beginnings, both our organizations have found different answers to the same fundamental question: “How do you take a difficult situation and use it to better the world?”

Our worlds came together again in 2017, thanks to the generous support of Global Fiberglass Solutions co-founder Don Lilly. Don has said, “There are such compelling synergies between our workstreams, in that both organizations are driven to find solutions that will increase health and well-being in our global community. And, with much regret, we lost Ken to cancer a couple of years back, which only underscores our commitment to the cause.”

Both The Max Foundation and Global Fiberglass Solutions see the tremendous value in public-private partnerships and believe social enterprise is the best way to build a better world. As a public nonprofit organization, The Max Foundation’s success depends upon donations from companies like Global Fiberglass Solutions – this strong community support makes our mission possible. We look forward to our continued collaboration with Don and his team and welcome the chance to forge new partnerships with like-minded individuals and organizations along the way.

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.

Let our Global Playlist of Inspiring Songs Rock Your World Cancer Day!

February 4 is World Cancer Day! So, how are we honoring World Cancer Day in 2018? With a powerful playlist of songs shared with us by our global team of advocates around the world.

Living with cancer can be likened to running a marathon that requires energy, stamina, support, and encouragement; it takes the same and more to get through daily disease treatment regimes. We want you to know that you are not alone in facing your diagnosis. You have the support from our global community each day! We created a playlist of inspiring songs from around the world so you can listen anytime to keep you going.

These are not just any songs, friends. These are songs that are upbeat, energizing and empowering! Songs chosen to remind us and remind our patient friends all around the world that on World Cancer Day and beyond, “We Can, I Can”. After all, we can all listen to inspiring music and feel the support of your community.

Listen to the World Cancer Day Playlist today!

 

World Cancer Day Playlist 2018 songs:

  • Diego Torres – Abriendo Caminos
  • Axel – Celebra La Vida
  • Empire Of The Sun – Alive
  • Արև ենք միասին
  • Johnny Clegg – Great Heart
  • Meghan Trainor – Better When I’m Dancin’
  • Luis Miguel – Sueña
  • Hạnh Phúc Bây Giờ – Thiền Ca
  • OK Go – This Too Shall Pass
  • Friends of Max – All India Meet
  • Tracy Chapman – Stand By Me
  • Voces Unidas – Puedes Llegar
  • Manjerum – Guppy Malayalam
  • Sauti Sol – Sura Yako
  • Phool Ko Aankha Ma Phoolai Sansara – Ani Choying Dolma
  • MV Together – บอย Peacemaker
  • Hawak Kamay – Yeng Constantino
  • Mavis Staples – Far Celestial Shore
  • Chris de Burgh – Riding on a Rainbow (Live)
  • Friends of Max Leadership Summit
  • Freedom – Mulanya Di Sini
  • Miriam Makeba – Pata Pata
  • Schubert Serenade
  • Marc Anthony – Vivir Mi Vida
  • Hum Honge Kamyab 2018 Ahmedabad Meet
  • Shakira – Try Everything (Official Video)
  • Mercy Masika, Emmy Kosgei, & Evelyn Wanjiru – Subiri (Wait)

Finding Value in the Patient Experience

Health systems around the world are often strained due to the high burden of costs. The idea of value frameworks has arisen as an attempt to guide decision-makers in their choices on behalf of patients. These value frameworks evaluate all aspects of cancer treatment: clinical benefit, side effects, and improvement in patient symptoms or quality of life. But given the complexities of the multitude of health systems around the world, it is not a straightforward discussion. Currently, the dialogue is primarily driven by thought leaders and health economists from the United States and Europe. But there are critical voices missing from this discussion: patients and patient advocates.

Recently, I had the opportunity to meet with a group of advocates from around the world to discuss value frameworks in an attempt to create a “patient framework” of our own. While that goal was too ambitious for the time we had together, we agreed on the need for input from the patient and advocate perspectives to help inform us what ‘value’ means. The result of this meeting was an article just published in the Journal of Health Expectations, co-authored by international advocates for cancer care.

Read the publication: Patient value: Perspectives from the advocacy community.

Sitting together with patient advocates from around the world to discuss what brings value to patients was eye-opening. We explored the intricacies of our health system realities and distilled what some of the universal components or best practices are commonly shared within all these systems.

In many ways, this collaborative journal article was in response to methodologies on the value frameworks created by the American Society of Clinical Oncology (ASCO) and the European Society for Medical Oncology (ESMO.) Advocates felt strongly that patient voices should be heard and valued deeply throughout the whole process of creating the value frameworks. Both ASCO and ESMO followed up on their original publications with updates that reflect and integrate some of the ideas outlined in our publication. You can see their updates below:

As a group of international advocates, we acknowledged that issues central to patients are not always the same ones prioritized by those who make decisions based on cost, or even pure research, without patient-reported outcomes. We wondered aloud how decisions can be made for us but without us. This publication was a way to take action and assert our viewpoints in the global dialogue happening today.

See how we are bringing the patient voice to value frameworks. Read the publication and share your feedback in the comments.

Solidarity Ties Through the Mountains

Nestled in the mountains of Peru, there’s a place called Cusco where you’ll find the cancer patient group, Lazos Solidarios (Solidarity Ties). Yusef Herrera, created Lazos Solodarios to help cancer patients in this remote region in 2009 and today, the organization is supporting families facing CML and LLA, many of them children. Yusef, a dentist, became a committed advocate to close the cancer divide between these rural communities and their access to treatment and support.

In the beginning, there were many national security problems in an area dominated by drug dealers and terrorists. People were unprotected and scared, and a cancer diagnosis the last worry they needed. Yusef was joined by an economist and physician, and together, they worked to change the quality of life of the rural farmers, taking them out of illegal activities and guiding them through the process of coffee exportation. Farmers were empowered by the new trade and families benefitted from health and awareness campaigns that improved their well-being.

In 2009, they turned their focus on the city of Cusco, developing solidarity jobs with a group of teenagers in hospitals. They decided to create an organization with the objective of developing solidarity among the villages of Peru. That was the birth of Lazos Solidarios.

During 2010, they worked in the childhood leukemia unit of Antonio Lorena Hospital, a hospital in Cusco for people who need primary care, mainly farmers. They organized playful activities for children and their parents. Yusef also developed activities that would encourage blood donation. Little by little, they made strides in their efforts to support the hospital’s leukemia unit.

This year, Yusef found himself in a difficult situation at a hospital in Lima. Children from Cusco had to travel to Lima to do PCR tests to ensure their cancer treatment was working properly. These children were living at the hospital because they couldn’t afford to pay for accommodation in Lima. Some of these patients were working by selling candies at the hospital’s entrance and corridors.

Yusef and his team had to address the situation. They decided to make the 20-hour car-ride journey to transfer the samples themselves from Cusco to Lima as many times as necessary. Yusef has also started the process to transport biological samples by airway, currently being considered by the Peruvian Congress.

Meanwhile, Lazos Solidarios continues to fulfill its mission, working in favor of prevention and promotion against cancer and bridging the cancer divide to bring dignity and hope in the face of cancer.

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Join Gershon as he shares his journey from cancer patient to advocate and leader.
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