UICC supports patient groups in making the voices of cancer patients heard

The Indonesian Cancer Information and Support Center Association (CISC) is one of several UICC member organisations to receive a grant through the Patient Group Mentoring programme. CISC organised a workhop that enabled participants to increase their understanding of the importance of good quality data for effective advocacy and cancer control.
29 June 2022

Grants awarded by UICC to members in the Eastern Mediterranean and Asia Pacific regions support projects linked to issues of equity, research, cancer and ageing, cancer survivorship and prevention.

UICC’s Patient Group Mentoring programme (PGMP) was launched in 2018 to connect patient organisations at the regional level and strengthen their ability to make people living with cancer key partners in health systems, and in decisions affecting cancer services and care.

As part of the PGMP, UICC extended small grants, up to USD 3,500, to organisations in the Eastern Mediterranean and Asia Pacific regions conducting activities in advocacy and patient support. The projects were carried out from December 2021 to May 2022 and aimed to improve equity in cancer care, highlight the importance of data, educate the public about cancer prevention, advocate for the needs of older adults or learn about the experiences of breast and childhood cancer patients and survivors.

In this article, UICC provides details on some of the projects that received grants through UICC’s Patient Group Mentoring programme.

"UICC is delighted to have been able to provide financial support to some of the patient groups in its network to develop their activities, as part of the Patient Group Mentoring Programme – all of which seeks to raise the voice and perspectives of people living with cancer, in cancer care delivery and health systems. It is great to see the breadth and scope of activities delivered through these small grants."
–    Dr Kirstie Graham, Director of Capacity Building, UICC

Closing the rural-urban divide – AMAL, Morocco

People who live in rural areas far from care centres face significant barriers to pursuing treatment compared to patients living in urban settings, where care centres tend to be concentrated. These challenges include transportation difficulties, finding affordable accommodation in the city while undergoing treatment, arranging time away from work or childcare while they are absent

To address one of the more significant factors that often lead people from rural areas to abandon treatment – the  Association AMAL in Morocco (Association des Malades Atteints de Leucémies or Association of people living with leukaemia) is building a “Patient Hotel” to provide suitable accommodation for people with cancer while undergoing treatment.

The funding provided through the grant supported an advocacy and fundraising campaign related to this initiative. It aimed to sensitise public authorities, medical practitioners and the general public about the healthcare conditions of rural populations and the problem of centralised healthcare. 

AMAL worked with a professional agency to produce a video for the campaign. It was distributed on social media ahead of World Cancer Day and continues to be used by the organisation as an advocacy and fundraising tool, and to inspire other patient groups. 

“We would like to thank UICC for its support, supervision and mentoring, which has helped us to spread awareness about leukaemia patients, to encourage people to become more positive, and most importantly to support them mentally and physically in their fight against cancer.”
Bahija Gouimi, President of AMAL 

The importance of data to shape cancer care – CISC, Indonesia

Reliable data provides decision-makers with critical insights into a country’s cancer burden: the number of cases and cancer-related deaths, if they are increasing and how fast, which cancers are most prevalent and among which populations, etc. A key challenge in developing and implementing an effective national cancer control plan is therefore having enough quality data to inform policymaking.

The Indonesian Cancer Information and Support Center Association (CISC) is a patient organisation whose objective, with the PGMP grant, was to increase its members’ understanding of the use of data for advocacy, and how they can participate in data collection through research.

The project consisted of a hybrid educational event, titled “Evidence-based advocacy: Making a difference”, which took place on 4 December 2021 at the MRCCC Siloam Hospitals Semanggi in Jakarta and was attended by the Minister of Health of Indonesia. Through the workshop, participants increased their knowledge and understanding of the importance of good quality data, with pre- and post- test scores indicating a 43.5% improvement.

CISC is now also currently involved in a research study with Siloam Hospital Jakarta to understand topics of relevance and benefit to cancer patient navigation in Indonesia. 

“In addition to increasing members' knowledge about good data quality, this project also increased the organisation's role in cancer data collection and strengthened collaboration with other stakeholders regarding data and evidence-based advocacy efforts in Indonesia.”
Aryanthi Baramuli Putri, Founder and Chairperson of CISC

Sensitising health professionals to the needs of older adults – PFS, Palestine

People aged 65 and above are 11 times more likely to develop cancer than younger people and currently represent more than half of all cancer cases worldwide. As populations age, the increase in cancer cases among older adults will require health systems to adapt and respond to the particular needs of this population, which often faces assumptions or even prejudices that negatively affect their care, a system-wide lack of expertise in geriatric oncology and a lack of representation in clinical trials.

The number of older adults in Palestine is quite small, according to Patient's Friends Society-Jerusalem (PFS); however, the incidence of cancer among this population is rising and health professionals in the country appear to have little if any training on working with older adults living with cancer.

PFS received a UICC grant to help explore and understand gaps in healthcare workers’ knowledge of and responses to the physical, social and emotional needs of older adults with cancer. PFS organised a one-day workshop at Hebron University that brought together 50 healthcare professionals, health sciences students and cancer survivors from different districts, organisations, health sectors and academia. Healthcare participants were given hands-on training in oncology, palliative care and patient interaction with cancer survivors.

Following the success of the workshop, PFS hopes to organise a longer workshop as well as encourage other institutions to organise similar training days building on the connections made through this project. 

“The UICC grant enabled us to organise and conduct an ‘ageing and cancer’ workshop in Palestine which was a first! With the connections we made for this activity we look forward to more collaborations and expanding our activities around the country. Speakers from the region and the USA all helped to make this an enriching day.” 
Carol El Jabari, Executive Director at Patient's Friends Society, Jerusalem

Overcoming childhood cancer – Kythe Foundation, Philippines

An estimated 400,000 children and young adults under the age of 19 develop cancer every year. Survival rates vary, from more than 80% in high-income countries to less than 30% in low- and middle-income countries. Several factors contribute to this inequity, among which a lack of data, of diagnostic capacity and of cancer medicines: only 28% of low-income countries report having enough medicines to treat childhood cancer against 96% of high-income countries.

In the Philippines, the most common type of cancer among people under the age of 19 is leukemia and their chances of survival range from 15% to 45%, according to the Kythe Foundation, which sought to highlight the experience of childhood cancer survivors through their project. 

The Kythe Foundation put the grant funding towards the creation of a video, in which five childhood cancer survivors spoke about their cancer diagnosis, treatment plan, daily routine and struggles, as well as what factors supported their healing process. The stories and video were presented during an online event on 15 February as part of the Foundation’s World Cancer Day activities.

Through another project, which also benefitted from a grant, the Kythe Foundation brought together adult and childhood cancer survivors in a webinar that sought to highlight the gaps that exist between childhood and adult cancer care. The objective was to use the insights into patient experiences that were provided by the participants to develop solutions that could help close the gap in care for the different generations.

“The support generated for Kythe's initiatives and programs such as this allows us to share a message of hope and of continuing to aspire for a better life beyond cancer. Conquering the illness is the start of a new journey for these children who were able to finish the treatment.” 
–    Maria Fatima "Girlie” Garcia-Lorenzo, Co-founder and Executive Director of Kythe Foundation

Last update: 
Thursday 7 July 2022
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