Leukemia Think Tank Feedback: State of Leukemia in South Africa

A Leukemia Think Tank, hosted by the South African cancer advocacy group Campaigning for Cancer (C4C), took place over two days, from 26 to 27 September, at the Premier Hotel in Midrand, Johannesburg.

Stakeholders from various sectors attended the multi-disciplinary event to discuss how health professionals and patient groups can collaborate to improve responses to leukemia and ensure that existing plans reach patients effectively.

We were fortunate to have key contributors from patient advocacy, medical, pharmaceutical, and government sectors work together to assess the current state of leukemia care in South Africa.

On Day 1, Lauren Pretorius, CEO of C4C, set the tone by defining access for leukamia patients in both public and private sectors, with reference to international practices. While global advancements in medical technology and innovative interventions have contributed to improved leukemia survival rates, challenges remain. In South Africa, many patients are not diagnosed early enough, and those who are often struggle to access the necessary care to survive.

Mr Sikhonjiwe Masilela, Director: Maternal Child Health HGS EPI ISHP AYWH and Nutrition at the Gauteng Department of Health (DoH), followed with an insightful presentation on policy and guideline development for leukemia care in South Africa. He emphasized that advocacy is crucial for driving policy changes, particularly in support of neglected cancers like leukemia, where more focused efforts are required.

The following speakers contributed to the dialogue over the two days:

C4C is currently compiling a comprehensive report based on the discussions and findings from the event. The Think Tank participants committed to continued collaboration across several areas, including education and awareness, advocacy and testimonies, research and data collection, healthcare access, and policy changes and have committed to the following action items following this Think Tank:

Education and Awareness:

• Evaluate how language is perceived
• Make sure education messaging is relevant to people we are talking to
• Back to basics – apply learnings from TB and HIV to educate patients in South Africa
• Need to simplify language to raise awareness
• Use positive language to raise awareness. Example, educate around stigmas that exist ie. Palliative care
• Provide Agency – give patients words to advocate for themselves
• Native language – educational material development
• Dedicated education at the Primary Healthcare level
• All marketing campaigns have to precede a Primary Healthcare marketing campaign to empower PHC
• Access the Leukemia Handbook and share – CHOC, ensure we use the same language
• Standardize Leukemia material across all stakeholder groups
• Advocate for IMCI for adult cancers?
• Integrate oncology education into the syllabus – like HIV
• Consolidated social media campaign to run every XX
• Leukemia is curable
• Differentiate between the 4 different types of Leukemia and communicate specific treatment plans that link to specific types

Advocacy and Testimonies:

• Define advocacy priorities – Impact Effort Matrix
• Create a Leukemia network
• Highlighting patient testimonies in the media (media include: blogs, social media, digital media channels, print media, local media, radio, churches and religious groups, local community forums)
• Train patients to be impactful spokespeople – C4C training, empower patients to use stories for good
• Create a 10-point action plan
• Tell stories from start to end – tell more holistic stories
• Integrate leukemia testing into other disease areas
• Define referral pathways for adolescents
• Not to be scared of sharing lessons learned
• Target traditional healers in simple language with advocacy efforts
• Conventional medicine and traditional healers – identify roles of groups to educate and empower without alienating
• Door-to-door outreach program to raise awareness for stem cell donations
• Reach out to pharmacies as a channel for communication (Identify overlooked channels – like schools and local clinics)

 Research and Data Collection:

• Enablers and barriers for patients
• Mapping exercise to see where exactly Leukemia is treated in SA
• Identify evidence we need to develop to advocate from data that exist within multi-disciplinary groups
• State hospital need: Data capturers and statisticians to improve access to data – ISPOR opportunity?
• Looking at research resources – ISPOR and C4C

Healthcare Access:

• Set up guidelines for alternative treatment plans and screening
• Stem cell transplant should not be capped at 65 – patients should be evaluated
• Ensure guidelines align with Essential Drug Lists
• Patient journey guideline
• Blood transfusions – incentive based blood transfusions to increase
• The right medication at the right place at the right time
• Systems failures – logistical processes in hospitals, logistics to and from treatment
• Challenge the mindset of the healthcare professional to be more receptive of patients to expedite referrals
• Educate decision makers on the impact of time wasted
• Attitude
• Cost: how to get medicine to patients cheaper? Looking at alternate reimbursement models to improve access. Alternate reimbursement is a tool to promote equity.
• Centre accreditation and including diagnostic requirement
• Total cost of care vs Drug cost
• EML – essential medicine list – look at best buys
• Value based care – shortfall, it doesn’t currently include the voice of the patient. Lacking patient experience and preference in SA. Need to amend Health Technology Assessment to include patients experience and preference.

Collaboration:

• Create links to collaborate
• Share resources to grow networks – collaborate through networking
• Data collaboration – good quality data to be shared
• Small group presentations on specified topics (expert presentations online to share information between multi-stakeholder groups)
• Patient navigators are key to facilitate collaboration
• Review findings from the sessions and have a work session to decide how it can be applied to stakeholders to ensure dedicated collaboration in the right areas.
• Create a framework to enable stakeholders to contribute in areas where they have experience.
• Treatment presentations to raise awareness

“We would like to extend our gratitude to ALAN for supporting the Think Tank and look forward to sharing the outcomes and strategies for continued collaboration in the final report,” says Lauren Pretorius, CEO at C4C.

Download the report here –> Meeting report