Access to Treatment and Support

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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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!

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.

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!

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.

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.

Access to Treatment is Access to Life: A Message From Princess Dina

As part of our 20th Anniversary Celebration on October 19th, The Max Foundation was honored to have Princess Dina, President-elect of the Union of International Cancer Control, reflect on our global efforts over the last two decades. We share her letter here with gratitude and humility.

“Lack of access to treatment” is a five-word sentence that is bandied about a lot in the global advocacy world. The academic-style labeling of the term at times numbs us from the real horror on the ground from what “lack of access to treatment” actually looks like.

Not The Max Foundation. The Max Foundation understood that when a child, for example, has chronic myeloid leukemia (CML) and does not have access to medication, it literally means that this child will die in excruciating pain and right in front of their helpless parents, whose only fault is that they live in the wrong hemisphere. As the mother of a cancer survivor, I cannot begin to imagine how horrific this would be.

If there is one organization whose sole mission is to deliver rather than talk about access to treatment, it would be The Max Foundation. With more than four million monthly doses of lifesaving treatment, love and support given to over 80,000 patients for 20 years, through great local and regional partnerships, The Max Foundation has translated “access to treatment” to what it really means: “access to life”.

With the overwhelming knowledge that 70% of global cancer deaths are in low- and middle-income countries, who are least prepared to deal with cancer, The Max Foundation did not shy away from this statistic, but rather it steeled their resolve. The Max Foundation started working, reaching out and never wavered. Day in, day out for 20 years, The Max Foundation has heeded the call of help from so many patients.

As pioneers in the management of global access programs, as well as other access channels and diverse partnerships, The Max Foundation has delivered on its mission and has honored the legacy of Maximiliano (Max) Rivarola in the most noble of ways: his memory is forever linked with the lives of thousands of human beings from all over the world who have been given a second chance at life.

Her Royal Highness Princess Dina Mired,
President-elect of the Union of International Cancer Control
Former CEO of King Hussein Cancer Foundation in Amman, Jordan

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

Max Climbs Mt. Kinabalu!

Update: Watch our climbers take on Mount Kinabalu in our new video!

We’ve said many times since the inception of Max Global Experience – Mt. Kinabalu that the climb itself is a metaphor for living with cancer, but it all took on a new level of meaning as we set out on July 22nd to finally start the climb we’d been training and planning for.

This climb was not only a physical challenge, but mental and emotional as well. Each of us had to dig deep within ourselves to summon the strength, courage, and determination to keep going, putting one foot in front of the other, until we reached base camp and then set out in the dark early hours of July 23rd for the summit.

Each of us had our individual experience with the climb, and at times we climbed silently, working hard for each step and each breath as the altitude increased. But we were not alone – we shared a strong connection and solidarity among our team of 23 that in just a few short days grew close through our shared experience, supporting one another at every turn and celebrating each climber’s milestones along the way.

We also had guides, whose calm and reassuring presence helped us through each twist and turn of the summit trail. Finally, we had our friends and family at home cheering us on individually and collectively, many of whom were donors supporting our fundraising campaigns. For me personally, each climber on our team, every patient I was fortunate to meet and speak with in Malaysia, and each of my supporters back home motivated and inspired me to put everything into my climb!

Reflecting on our climb just a couple of short weeks ago, I still find myself amazed by our team’s hard work, dedication, and heart that they put into every step of this journey. It wouldn’t feel right to talk about only my experience, which would not have been the same without our team. Below are just a sampling of impressions from our other climbers, but you can read more from other team members in Max Family Malaysia’s “The Climb Series” blog and see the full album of photos from the climb on Facebook!

“I remembered the moment, the same exact moment of wanting to quit in the midst of your body falling apart. But again, I didn’t know where it came from, there was an unleashed momentum and burning passion kept pushing and telling me that I got to finish whatever I had agreed to start.” —Dr. Abd Razak Muhamad, CML survivor

“Walking in the dark is just like having CML and not knowing your treatment will be successful or otherwise. It’s just the belief in us and our spiritual and mental strength that say, yeah I can do it, I can reach the summit and I can overcome all the fear and stigma of CML.” —Abu Hurairah, CML survivor

“We were connected through a deeply bonding experience because our lives depended on it. Very much like our cancer survivor friends around the world who come together to support each other as they each climb the mountains ahead of them.” —Erin Schwartz, VP of Strategic Partnerships and Communications

Read Tony Leo’s 10 Year Journey to the Top of Mount Kinabalu

See more from our Mt. Kinabalu trip

The Brave Fisherwoman: In Remembrance of Hira Goma

I share this story to talk about a dear patient and friend, Hira Goma, whose determination and inner strength in the face of her cancer diagnosis have been an inspiration to me for the many years I have known her. Just recently and out of nowhere, we lost Hira after the sudden onset of a malignancy unrelated to her cancer, which took her away from us in just two weeks.

I pray that Hira’s family will find the strength to cope with her passing and that all who knew and loved her will also find whatever we need to help us come to terms with her passing. I also hope that in telling her story, I can in some small way celebrate and honor her life and her strength and that she can continue to inspire others.

Hira Goma was a deceptively diminutive Koli fisherwomen from the seaside village of Pachubandar, which lies to the far North West of Mumbai and has been home to generations of Kolis who are the city’s traditional fishing community. Like many other women in her village, Hira’s day began at the break of dawn. Morning chores included cooking for her large extended family, after which she took off to the wharf to get her fish for a day of selling in the bazaar. She was outspoken and cheerful and freely interacted with everyone.

Alongside her husband and other menfolk in the family, she was equally responsible for providing the economic stability her family needed and therefore commanded great respect. Hira returned home only after the heavy load on her head was sold, a task that could take all morning and afternoon to accomplish. 

Times were very tough for Hira and her family during that time. The reckless urban growth that spread well beyond the city limits had begun to ruin the sea and the coastline which was their only source of livelihood, as the fishing expeditions returned with fewer and fewer baskets of increasingly smaller fish. The Kolis were facing a severe crisis already when cancer reared its ugly head in their midst. And it threatened to take away Hira, the mainstay of the family.

The family was devastated. Though Hira was childless, she was a mother to all her nephews and nieces. Her mother was distraught when Hira received her diagnosis, crying out that it was she, the elder woman with a long life behind her that should be taken away by cancer. Beyond the immediate family, the whole community was in shock.

Her husband adored her and was determined to do all that was needed to save her. After all, he said, “we battle the forces of nature when we go out to the sea. We are hardy people and we are ready to die earning our livelihood. What is cancer in the face of the dangers we face every day?”

Harnessing whatever resources they could garner, no stone was left unturned in seeking medical advice in the little fishing village. With time and great effort, they managed to get the diagnosis confirmed and found their way to Tata Memorial Hospital. Once there, it was just another step to the referral to The Max Foundation and access to the treatment that would keep Hira alive and well for over 10 years – Glivec.

In all these years, through all of the struggle and emotional upheaval of her diagnosis, Hira remained her active and busy self. She never missed her daily routine of the wharf and the bazaar, nor did she let her work and routine come in the way of her managing her CML.

Hira never missed a dose, nor neglected to attend her follow up visits, measuring the distance between the city and her fishing village not in kilometers, but in the benefits she received from her treatment. She knew the daily medication kept her alive and active, but would say with a shy smile that lights up her face that even more important than the medicine was the love of her husband. He stood by her throughout the years and never let her feel that her cancer has diminished her in any way, affected her ability to work and live her life as normally as before.

She said that to find The Max Foundation and her dear Amma was like meeting another family – “All the fear and worries disappeared when I met The Max Foundation. Over the years this bond has only grown stronger and deeper”. She was a dear friend and we cherished her, for her personal strength in the face of cancer, for her determination to live life as fully as before her diagnosis, and for her generous and warm spirit.

Hira Goma stood tall and proud and wore her cancer like a medal. I will miss her dearly. Death can never take away life. And it is that life we must celebrate. Even in death. Especially in death.

In honor of Hira, we have published her story as an illustrated patient journey. View and share Hira’s story.

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