Posted on May 31st, 2023

Following a request for submissions, UICC was humbled to receive a number of testimonies from people working at UICC member or partner organisations, or in the wider global cancer community, on who inspired them to work in cancer control.

In these testimonies, individuals share how deeply their lives have been impacted by cancer and specific personalities – to doctors displaying excellence in care to people facing cancer themselves who have inspired others with their resilience and fortitude. These testimonies also illustrate the power of collaboration, compassion, and individual contributions in the global fight against cancer.

From the founder of a cancer patients’ support association in India, who emphasises the importance of counselling and holistic care, to a breast cancer survivor and advocate in Rwanda, who calls for early detection and comprehensive cancer care, these testimonies underscore the significance of patient-centred approaches.

UICC presents these inspiring personalities, from the perspective of the person whom they inspired. If you also wish to share the story of someone who inspired you, please send your submission here.

Yogendra Kumar Sapru, India – Founder and Chairman, Cancer Patients Aid Association

Submitted by Shubha Maudgal

When my mother relapsed in 1989, she refused to go through chemotherapy again. We could not convince her otherwise. Mr Sapru was my superior at Johnson & Johnson. He had started Cancer Patients Aid Association (CCPA) 20 years earlier.

He reached out to me and I took her to meet him. Thanks to that discussion with Mr Sapru, she said she was ready to take chemotherapy “for me and for our family”. I discovered the role of counselling in cancer.

I joined CPAA in 1999 and my first assignment was setting up CPAA’s website, then considered a waste of money.

There have been many such examples of Mr. Sapru’s prescient vision, encapsulated in the “Total Management of Cancer” :

Raising awareness about cancer prevention, risk factors, warning signs through targeted lecture
Promoting early detection through screening camps all over India and a weekly free clinic
Holistic care providing financial aid, appropriate information and psychological, spiritual and grief counselling
Rehabilitation during treatment and re-activating life skills after cancer
Advocacy for affordable drugs and anti-tobacco legislation. He spearheaded the legal case for generic drugs when no NGO was willing to research on psychosocial aspects of cancer, effect on patients and caregivers and translational research into genetic makeup that ensures protection against oral cancers

All the above are considered de rigueur now but were groundbreaking at the time. Over the years, Mr Sapru has grown CPAA from a tiny room with INR 500 (USD 6) and second-hand typewriter into a well respected organisation with a budget of over IND 200 million (over USD 2.4 million), with branches in three Indian cities and a presence in 85 hospitals in 20 States. He has been recognised for his innovative work by the World Economic Forum, WHO and UICC.

Philippa Kibugu Decuir, Rwanda – Founder and Executive Director, Breast Cancer Initiative East Africa

Submitted by Louis Ngabonzima, Head of Advocacy and Communication, Rwanda NCD Alliance

Philippa Kibugu Decuir is a breast cancer survivor and cancer advocate in Rwanda and beyond. I have collaborated with her for several years, co-organising the World Cancer Day celebrations in Rwanda for the Breast Cancer Initiative East Africa (BCIEA).

I was inspired to work in the field of cancer control when coordinating the “Our Views, Our Voices” initiative intended to seek insights, needs and challenges of people living with NCDs, with an overall goal of developing the Rwanda Advocacy Agenda of People Living with NCDs. At that time, I had the opportunity to hear and witness first-hand the lived experience of people living with NCDs, particularly cancer.

In an interview, Philippa K. Decuir, representing people with or who survived cancer, said:

“Most of the time, women don’t have any inkling about breast cancer until it gets to the incurable stage. Yet breast cancer and other cancers are preventable, manageable and curable for both women and men, and therefore early detection could lead to proper treatment and management.”

As an advocate for NCDs, my mission is to be the voice of the voiceless and a catalyst for positive change. I firmly believe that it is now my duty to focus on cancer and advocate for timely access to comprehensive cancer care. This includes disseminating information, promoting screening and diagnosis, ensuring proper treatment and rehabilitation, and advocating for palliative care. I urge decision-makers to translate their will and plans for cancer response into action. Furthermore, I emphasize the importance of involving people with cancer in decisions that directly impact their lives. By doing so, individuals with cancer and other NCDs can overcome their primary challenges, such as overwhelming financial barriers and out-of-pocket expenses, and ultimately achieve their human rights and social justice.

Prof. King David Terna Yawe, Nigeria – Professor of General Surgery and past President of the Nigerian Cancer Society

Submitted by Alhassan Umar Adamu, President and CEO of the Nigerian Cancer Society

Professor King David Terna Yawe was my teacher at the renowned University of Maiduguri College of Medical Sciences in Nigeria. During my medical education, he served as the President of the Nigerian Cancer Society. It was during this period that I, along with my senior colleagues, found the inspiration to venture into cancer advocacy. This happened back in the year 2001. Now, twenty-two years later, I find myself leading the Nigerian Cancer Society, with Professor Yawe always providing us with guidance and further motivation.

Mantou, China – Young woman diagnosed with Hodgkin’s Lymphoma

Submitted by Siqi Liu, New Media Editor, House086 (China Lymphoma Patient Group)

In 2019, I chose to film a young woman named Mantou, who had been diagnosed with Hodgkin’s Lymphoma in 2016.

After six rounds of standard chemotherapy, the tumour showed no signs of remission. The situation worsened as subsequent rounds of chemotherapy, totaling ten, failed to halt the tumour’s progression and the disease advanced severely.

Thankfully, through the assistance of House086 [Ed. note: an organisation based in Beijing, China, which provides lymphoma-related knowledge and information and case consultant service to lymphoma patients], Mantou received information about patient recruitment for PD-1 drugs in China. She was successfully enrolled in the phase III trial group and, after a year, achieved complete remission.

Mantou is a resilient and optimistic young girl who faced the tremendous pain of chemotherapy with an active spirit and never gave up. While undergoing PD-1 treatment, she no longer had to endure the agonising chemotherapy side effects nor the burden of financial stress.

Eventually, her tumour went into remission and, today, Mantou leads a normal life; it is hard for anyone to believe that she was once afflicted by cancer.

Our team documented her story, which led to more patients learning about the benefits of PD-1 treatment. Additionally, the government’s medical insurance department recognised the practical needs of patients. As a result, the domestically produced PD-1 drug was approved for listing and inclusion in the medical insurance system. This development has helped numerous patients alleviate their financial burdens, achieve better treatment outcomes, and regain a sense of normalcy in their lives.

Dr Muhammed Aasim Yusuf, Pakistan – Consultant Gastroenterologist and Chief Medical Officer, Shaukat Khanum Memorial Cancer Hospital & Research Centres

Submitted by Mariam Ibrahim, Assistant Manager, Media and Communications, Shaukat Khanum Memorial Cancer Hospital & Research Centres (SKMCH&RC)

In December 1994, Dr Yusuf joined SKMCH&RC in Lahore, as a consultant gastroenterologist and became a member of the commissioning team. Today, he holds the distinction of being the longest-serving consultant at our hospital in Lahore. As the Chief Medical Officer for both of our hospitals, in Lahore and Peshawar, Dr Yusuf has been responsible for overseeing all clinical activities and maintaining clinical quality across both sites. Currently, he also leads the commissioning team for the third SKMCH&RC, which is being built in Karachi with the aim of bringing cancer care closer to patients and closing the care gap.

As a content writer in constant need of inspiration, I believe that hope is a crucial element for humanity. Hope is embodied by individuals who possess qualities that drive us to become better humans and work towards a more just and equitable world. Dr Aasim Yusuf is one such person who serves as a guardian of this institution, showcasing that “excellence is possible in Pakistan.”

While excellence is undoubtedly a team effort, behind every successful team there is an individual who goes the extra mile to ensure excellence through dedication, hard work and unwavering vigilance.

For instance, the achievement of Joint Commission International’s Enterprise Accreditation is a remarkable milestone for our organisation. It serves as concrete evidence of the quality services we provide to underprivileged cancer patients. Against all odds, Imran Khan managed to transform his dream of establishing a cancer hospital into a reality with the support of generous donors [Ed. Note: Imran Khan established Shaukat Khanum Hospital in Lahore in 1994]. However, sustaining the founder’s original vision for 28 years is yet another remarkable accomplishment.

On the occasion of our hospital’s 25th anniversary, I had the privilege of interviewing Dr Aasim Yusuf. It became evident to me that individuals like him, who have dedicated their entire careers to cancer control, serve as a source of inspiration and hope. Over the years, I have learned a great deal from him, absorbing his work ethic and embracing his ideals through my writing. This has motivated me to continue writing letters to the editor for national newspapers, author of articles on cancer control, and actively participate in UICC courses, because I firmly believe that every contribution matters.

Dr Julie Torode, UK/Switzerland – Board Member & Director of Strategic Partnerships, Institute of Cancer Policy, King’s College London; former Director of Special Projects, UICC

Submitted by Runcie C.W. Chidebe, Project PINK BLUE – Health & Psychological Trust Centre, Nigeria

I met Dr Torode in 2015 at UICC’s World Cancer Leaders’ Summit in Istanbul, Turkey. Since then, Dr Torode has been a phenomenal mentor and supporter of my work in Nigeria and Africa. She inspired me to think as a global cancer control advocate and act locally in galvanising African leaders and patients to bring the deserved better cancer care.

Dr Torode is a connector, networker and adviser. In 2016, I was confused and searching for a patient navigator trainer ; an email to Dr Torode cleared the path, providing me with so many connections. My biography, written by me or by any other person, would not be complete without Dr Torode. Thank you to UICC for connecting me with Dr Torode.

Sybil Hyde, cancer patient, Sri Lanka

Submitted by Joan Hyde, Coordinator of Suwa Arana, Indira Cancer Trust, Sri Lanka

My sister Sybil was so full of life, always well dressed and smartly turned out. She lived far from me and when she described her axilla lump [Ed. note: a swelling or mass that appears in the armpit region] as a “hard nodule”, diagnosed with cancer at the age of 52, I knew she was in for a long series of treatments.

I travelled to be with her and stayed with her until she died, at the age of 56. She endured her surgery, chemotherapy and radiotherapy with such dignity that I felt I had to see if I could help others to maintain their dignity with a smile as she had done.

Dr Lanka Jayasuriya Dissanayake, Sri Lanka – Chairperson/Trustee, Indira Cancer Trust

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