Honoured with the “Made with Patients Rising Star Award"

I am so excited to be honored with the “MADE with PATIENTS RISING STAR AWARD by PFMD in Italy. This award means a lot to me and Project PINK BLUE .

In 2017, I founded the 1st breast cancer support group with 9 patients, as of today, we have over 200 patients benefiting from our work. I‘ve recently started another support group in Lagos. The goal is to continue to support people impacted by cancer. Nobody should ever fight cancer alone. ?

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My passion for patient engagement started in 2016. I traveled to the World Cancer Congress in Paris, France to present the results of the BCNPP project funded by 辉瑞 Oncology & Union for International Cancer Control (UICC) . At this congress, I saw how many cancer patients and survivors were sharing their stories and leading impact in their countries. Most of the cancer patients were predominantly from America, Europe, and other high-income countries. I was pained that there were almost zero cancer patients that looked like me or from Africa at the Congress’ patient pavilion. I asked myself, does it mean that all cancer patients in Nigeria and Africa do not survive? Or could it be that cancer survivors in Africa do not live to share their stories??

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On my flight back to Abuja, I was frustrated, devastated, and restless. Upon my return, instead of allowing my frustration and devastation to overwhelm me; I decided to turn them into inspiration for actionable solutions for change. I founded the?Abuja Breast Cancer Support Group (ABC-SG), the support group that became the first support group in Abuja. I created a WhatsApp Group and we started hosting support group meetings and engaging diverse stakeholders including the National Cancer Control Programme (NCCP) of the Federal Ministry of Health (FMoH). I started mobilizing resources, promoting the group, advocating, and engaging several partners (including first ladies/wives of governors) to sponsor the support group.

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On 9th February 2017, at the 2017 World Cancer Day Commemoration event at Transcorp Hilton Abuja, we officially launched the support group known as Abuja Breast Cancer Support Group (ABC-SG) with nine (9) female breast cancer patients and one male breast cancer patient. As of today, we have over 200 patients who are part of this group. Considering that I am not a cancer patient, after a few months of being the leader of the support group, I?withdraw from the leadership and handed everything over to Gloria Orji, a breast cancer survivor.?

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So far, we have led several initiatives. We led advocacy for the Nigeria National Health Insurance Scheme (now Authority) to include cancer medicines in its essential medicine list. In 2017, I was invited to join the Ministerial Committee to develop the National Cancer Control Plan. I quickly requested to come with patients as a condition to join. It was granted and I brought Ms. Comfort Oyayi and Ms. Gloria Orji. I am so grateful to Wale Akinbowale of 罗氏公司 . Having Gloria and Comfort made a huge difference to this plan, they sat together with clinicians and expressed their fears, challenges, and pains.

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During the launch of the cancer plan in 2018, Prof. Isaac F. Adewole, the Minister of Health commended our efforts and recognise Gloria and Comfort. Painfully, we already lost Comfort Oyayi to metastatic breast cancer before the launch of the plan. H.E. Dr Zainab and Prof. Adewole were shocked to hear the news. It was a painful national loss.

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My other achievements in patient engagement were advocacy for President Muhammadu Buhari to sign and implement the bill for the National Institute for Cancer Research and Treatment in Nigeria. Supported patients to secure travel grants to attend the American Society of Clinical Oncology (ASCO) meeting in Chicago, the World Cancer Congress in Malaysia, the Breast Health Global Initiative in Seattle, the Advanced Breast Cancer Conference in Portugal, CIVICUS meeting in South Africa, and many other meetings across Nigeria. ???

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By 2019, I saw the need to expand the Abuja Breast Cancer Support Group (ABC-SG), and we founded the Network of People Impacted by Cancer in Nigeria (NePiCIN). The goal is to bring all cancer support groups across Nigeria under one umbrella and have a national body that speaks and supports cancer patients across the country. NePiCIN was announced publicly at the Cancer Survivors Conference hosted in 2020.?Presently, we are working to ensure that this network becomes an independent national group representing cancer patients in the country.

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I know that my voice is strong as an advocate to drive policy change and push our community and the government to improve cancer control in Nigeria. However, I know that the patients' voices are stronger than my voice. Cancer patients have been through the pains of cancer, and they can speak to the issues in a more robust way than I can. Patient Engagement is not about giving patients tokens, it is about allowing them to contribute and engage meaningfully to care, treatment, and issues associated with their health.

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Special thanks to PFMD for honoring me. Special appreciation to From Testing to Targeted Treatments (FT3) , Helena, Ozioma, Matt, Nicole, Sophia and all the team at FT3.

This award is dedicated to all cancer patients in Africa whose voices are not heard. I want you all to know that the world is opening doors to hear you. PFMD is a clear example! Your cry for inclusion in oncology clinical trials, access to precision medicine, better access to radiotherapy, more affordable cancer medicines, treatment support, and quality is coming. Never give up! I will never stop to advocate. Let’s continue to #ChokeCancer together. Special thanks to my staff and volunteers at Project PINK BLUE for all your support.

Let’s do more. ??

Runcie C.W. Chidebe, Executive Director, Project PINK BLUE?

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