“Delivering equity in Sickle Cell disease.” Second annual Ontario Sickle Cell Summit 2022

BY PAUL JUNOR

The Sickle Cell Awareness Group of Ontario (SCAGO) is the leading charitable patient organization providing evidence-based support to families with children, adolescents, and adults with sickle cell disease in Ontario. It had its beginning as Seed of Life Philanthropic Organization (SOLPO), which was launched on June 14^th, 2005, in memory of Sunday Afolabi, a young man who lost his life to sickle cell anaemia. The website states, “It supports clinical research and engages in psycho-social research, health promotion, patient and care providers’ education, community awareness, and the development of best practices guidelines.”

The mission of SCAGO is to improve the incidence of new sickle cell births and improve the quality of life of individuals and families living with sickle cell disease (SCD). The five main objectives of SCAGO are to fulfil the following:

• To educate the general public about sickle cell disease (SCD) and sickle cell trait (SCT)
• Provide psycho-social support to patients and families with SCD
• Reduce impacts of poverty on patients and families with SCD
• Provide a better understanding/knowledge of the disease to individuals with SCD, their caregivers, and families
• Improve the quality of care and treatment received by individuals with SCD
• Improve the quality of care and treatment received by individuals with SCD

Each letter of the acronym SCAGO represents one of the five important values:

S: Support patient and family-centred approach to the planning and delivery of our

services

C: Committed to improving our services to our constituents

A: Accountable for our services, resources, and behaviours

G: Gain recognition as the provincial voice for sickle cell disease

O: Openness and transparency in our services

On Friday, November 4^th, and Saturday, November 5^th, 2022, SCAGO will be hosting a two-day virtual event. The theme for this year’s summit is, “Delivering Equity in Sickle Cell Disease.” It will feature presentations and panel discussions with a focus on equitable care and sustainable effective treatment. Their partnerships include: McMaster Hospital, SickKids, University Health Network and London Health Sciences Centre. The summit will provide an opportunity for health care providers, patients, caregivers, health system leaders, health policymakers, government officials, researchers, advocates and industry partners to come together. These stakeholders play vital roles in fostering a collaborative spirit for new ideas and insights.

Participants in the summit will gain knowledge and a better understanding of:

• The impact of racism on sickle cell disease
• Ways those community members and healthcare providers can address stigma and other barriers to care
• Current curative treatments in sickle cell disease
• Hyperhaemolysis: what it is, how to treat it, how to prevent it
• Organ failure in sickle cell disease in different countries/settings
• Mental health and sickle cell disease
• Digital and behavioural interventions in sickle cell disease-using technology
• Quality standards for sickle cell disease for utilization in their clinical practice; and the ability to adapt existing care protocols to their clinical setting

Anyone interested in learning about the 2021 Sickle Cell Disease Summit can check the website: wwwsicklecellanemia.ca.

Registration for the 2022 summit and additional information can be seen on the website:

https://sicklecellanemia.ca/summit-registration-2022