Spot On CML

‘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!


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.

Spot On CML: A Little Card That’s Making a Big Difference for Diagnostics

Access to accurate diagnostics is a major challenge for many cancer patients in low- and middle-income countries (LMICs). This is especially true for chronic myeloid leukemia (CML) patients. GeneXperts, the machines used to diagnose CML, run $10,000-$70,000 USD, and the cartridges used for each test cost around $50 USD. At these prices, many health facilities in LMICs cannot afford to provide CML diagnostic testing for their patients. And without a definitive diagnosis, CML patients are unable to access lifesaving drug therapies.

The Max Foundation Senior Program Manager, Erin Lindsay Schneider, saw this situation firsthand when she visited the National Medical Center in Dushanbe, Tajikistan in April this year. When she spoke to the doctors there, she learned that diagnostic testing for CML patients isn’t available in Tajikistan. Patients must pay to have their blood hand-delivered to Moscow for testing. This option is out-of-reach for most in a country where 31% of the population lives below the poverty line. Partner physician, Dr. Mirzovali Rahimov, estimates that as many as 200 CML patients in Tajikistan lack access to diagnostic testing and, as a result, go without appropriate drug treatment. This situation isn’t unique to Tajikistan; CML testing capability is limited throughout Central Asia and Central America. Only two countries in sub-Saharan Africa have diagnostic testing for CML.

The Max Foundation and Dr. Jerry Radich of the Fred Hutch Cancer Research Center (Fred Hutch) are now partnering to help tackle this problem and improve CML diagnostics in underserved regions. Dr. Radich has developed a low-cost, paper-based diagnostic testing method for CML. Previously, vials of blood were sent to labs in Europe and the U.S. for testing, which was both costly and unreliable – vials were often damaged in transit. With this new method, a physician spots a patient’s blood onto a test card and sends the card to Dr. Radich’s lab at the Fred Hutch for processing. He and his team are able to perform accurate diagnostic testing on the samples even after weeks of transport. Once patients are diagnosed, The Max Foundation connects them with available treatments free of charge. The free treatment is made possible thanks to The Max Foundation’s partnerships with pharmaceutical companies to provide cancer drugs to patients in need in specified LMICs.

Program Officer, Erin Lindsay Schneider, with physicians at the National Medical Center in Dushanbe, Tajikistan. Dr. Mirzovali Rahimov is at the far right.

When Erin Lindsay learned that patients in Tajikistan lacked access to diagnostic testing locally, she told Dr. Mirzovali about the diagnostic program, dubbed Spot On CML. Spot On CML prioritizes physicians and patients who otherwise lack access to CML diagnostics, making Tajikistan an ideal candidate for. Dr. Mirzovali eagerly agreed to participate. Over the following weeks, he and Erin Lindsay coordinated shipment of the testing supplies, and Dr. Mirzovali gathered patients to draw blood samples, carefully prepared the test cards and shipped them to Jerry Radich’s lab in Seattle for processing. In July, the first results came in: 14 Tajikistan patients tested positive for Philadelphia chromosome-positive CML and were immediately approved for drug therapy. These patients range in age from 25 to 64.

Dr. Jerry Radich of Fred Hutch shows Pat Garcia-Gonzalez of The Max Foundation the results of a PCR test in his office in Seattle.

Demand for the Spot program is quickly growing. Testing in now underway for more patients in Tajikistan, as well as Burkina Faso, Cote d’Ivoire, Niger and Mongolia. The Max Foundation and Dr. Radich aim to test at least 365 patients – on for every day in the year – and connect them with treatment over the next 12 months. Spot On CML is making great strides toward overcoming barriers to diagnostics and better health for CML patients in low and middle-income countries!

Learn more about Spot On CML

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