– Today, WHO is launching the first global survey to better understand and address the needs of all those affected by cancer. The survey is part of a broader campaign, designed with and intended to amplify the voices of those affected by cancer – survivors, caregivers and the bereaved – as part of WHO’s Framework for Meaningful Engagement of People Living with Noncommunicable diseases (PLWNCDs). This Framework is a commitment to respectfully and meaningfully engage PLWNCDs in co-designing policies, programs, and solutions. The survey results will feed into the design of policies and programs to offer better well-being in the context of a cancer diagnosis and co-create solutions for the future.
Nearly every family globally is affected by cancer, either directly – 1 in 5 people are diagnosed with cancer during their lifetime – or as caregivers or family-members. A cancer diagnosis triggers a broad and profound effect on the health and well-being of all those involved. “For too long, the focus in cancer control has been on clinical care and not on the broader needs of people affected by cancer,” said Dr Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization. “Global cancer policies must be shaped by more than data and scientific research, to include the voices and insight of people impacted by the disease.”
Recent studies have shown that nearly half of people diagnosed with cancer experience anxiety and loss of faith and may be abandoned by their intimate partners. In low- and middle-income countries, financial hardship and loss of assets can be experienced by 70% or more of those affected. “When my daughter was diagnosed with cancer, our lives changed drastically and in ways that we did not expect. The effects of cancer last a lifetime,” said Ruth Hoffman, President of the American Childhood Cancer Organization.
Understanding and amplifying the lived experiences of people affected by cancer can create more effective and supportive systems. Yet, the needs and preferences of people with cancer and their caregivers remain unknown to many providers and policy-makers. “We are making a long-term commitment to place people affected by cancer properly at the center of the agenda, to co-create better solutions” explained Dr Bente Mikkelsen, Director of the Department of Noncommunicable Diseases at WHO. “This campaign will include four phases: releasing the global survey, hosting national consultations, presenting best practices and implementing community-led initiatives. We are ready to open a new chapter and improve the well-being of people affected by cancer.”
The ambition of the global survey is to reach more than 100 000 responders from 100 countries, a majority of whom live in low- and middle-income countries. The survey results are expected in early 2023 and, thereafter, used to shape policies, programs and services for people affected by cancer globally.
Since 2017, we are proud and honored to have worked with state legislatures across the country to secure $66 million dollars in funding with the goal of overcoming the national disparity between adult and childhood cancer research. Many times this effort begins with state cancer action plans. Currently only 11 states include substantive language specific to childhood cancer. We believe each state should have specific objectives related to childhood cancer! It takes a team to make meaningful policy change and we are so thankful to have such talented individuals committed to this cause.
When my 7-year-old daughter was diagnosed with acute myelogenous leukemia (AML) in 1987, I was grateful for the early research being done on bone marrow transplantation, a treatment that would ultimately save her life. Total body radiation and chemotherapy were so toxic. I believed that within twenty years, innovative research would result in new treatments – treatments that wouldn’t be so toxic to children with cancer. It’s been thirty-five years since her diagnosis and treatment and sadly, there has been little change in the treatment protocol for children diagnosed with AML. 
Have you been curious about the little warrior shown in our giving season images? Meet Iyra, a brave 4-year-old rhabdomyosarcoma warrior. 
Amped Electric Games has chosen to GO GOLD® during the event with funds going to the American Childhood Cancer Organization. During the games, guests can purchase 50/50 raffle tickets to win one of two electric unicycles. 
