Cystic Fibrosis Annual General Meeting Summary

Summary of the SACFA AGM

27 November 2024

This is a summary of the South African Cystic Fibrosis Association (SACFA) Annual General Meeting. The chairperson, Kimberly Keyzer, welcomed attendees and outlined the agenda, which included reports from various committee members and discussions on key initiatives. SACFA’s achievements over the past year were highlighted, including establishing partnerships with patient organisations and industry associations, providing support to patients, and hosting fundraisers. Kimberly emphasised the organisation’s focus on improving access to care and support for CF patients. 

Next on the agenda was finances. SACFA’s Treasurer, Heike Ludewig, presented the financial report, detailing income from fundraisers and expenses, including legal costs for the Vertex case. 

Moving on, Prof Marco Zampoli discussed the current status of access to modulator therapies like Trikafta for state patients.

Finally, The Patient Empowerment team had the floor. Rida Viljoen, patient empowerment manager, shared highlights from the year in her new role. Annemarie Holtzhausen, a new member of our committee shared more information about the clinic guardian programme. 

The meeting ended with information on the roles available in the management committee and a call for volunteers in various roles.

View: SACFA Presentation AGM 2024 (1)

Chairperson’s Report on SACFA Achievements

1. Introduction and Objectives

The South African Cystic Fibrosis Association (SACFA) hosted a strategy session facilitated by Rare Diseases South Africa to establish a greater organisational structure. The session emphasised the importance of collaboration among various parts of the organisation and a flexible approach to achieving objectives.

Objectives:

Our objectives include communicating with the CF community, raising public awareness and promoting medical advancements. Fundraising is essential to sustain these objectives.

Future Plans and Strategic Goals

  • Access to Care: SACFA aims to expand patient support programs, advocate for equitable access to medications, and increase public awareness of cystic fibrosis.
  • Multidisciplinary Clinics: Enhancing services by ensuring all clinics have access to multidisciplinary teams.
  • Early Diagnosis: Promoting timely diagnosis to improve patient outcomes.
  • Medicine Access: Advocating for state patient access to modulator therapies like Trikafta through policy engagement and public awareness campaigns.

2. Achievements

  • Partnerships: SACFA strengthened collaborations with organisations like Rare Diseases South Africa (RDSA), the World Patient Alliance (WPA), and Innovative Pharmaceutical Association of South Africa (IPASA). These partnerships focus on patient advocacy, policy changes, and ethical collaboration with the pharmaceutical industry.
  • Patient Support: 

Our efforts to support patients included:

  • Providing access to medication and medical guidance.
  • Financial aid for medical equipment and transportation to hospitals.
  • Funding the CF registry and patient welcome packs.
  • Fundraisers: Key events included the CF Golf Day, Our Virtual 6.5 for CF event, and CF Genes Day, supporting multidisciplinary teams and other initiatives.

Financial Report

Heike presented the financial report for the year ending March 2024. The report detailed income from various fundraisers and expenses, including legal costs for the Vertex case. 

  • Our main income for the year was sourced from fundraising events.
  • Significant expenditures included legal costs related to the Vertex case, patient support, and the CF registry.
  • Despite challenges, SACFA balanced income and expenditure by utilising funds from previous years.

If you would like to view the financials, please reach out to our team and we will share more detailed information.

Access to Modulator Therapies for State Patients

Progress on Modulator Access

  • Achievements:
      • Following extensive lobbying, Trikafta is now available in South Africa for medical aid patients, benefiting around 170-180 individuals.
      • Lobbying, advocacy, efforts and Cheri Nel’s court case asserted pressure, which paved the way for broader accessibility.
  • Remaining Challenges:
    • Approximately 180-190 additional patients, reliant on public health systems, lack access to Trikafta.
    • Trikafta is not yet registered or included on the National Essential Medicines List (NEML), limiting its availability in the public sector.

Current Initiatives

  • Long-Term Goal:
      • Submission of an application to include Trikafta in the NEML, starting the review process in April 2025.
      • This multi-year process aims to establish national availability but requires sustained advocacy and lobbying.
  • Immediate Strategy:
  • Hospital-Level Procurement:
        • Empower clinicians to motivate for the acquisition of Trikafta at individual hospital levels, such as Steve Biko, Charlotte Maxeke, Tygerberg, and Albert Luthuli hospitals.
  • Collaboration with hospitals’ review committees to navigate procurement processes within existing budgets.
  • Negotiations with Vertex Pharmaceuticals:
      • Explore pricing agreements tailored to public health facilities, potentially lower than private sector rates.

Call to Action

  • Community Engagement:
      • SACFA members and the CF community are urged to campaign and lobby government bodies, hospitals, and policymakers to prioritize modulator therapy access.
      • Build on momentum gained during previous advocacy efforts.
  • Volunteer Opportunities:
      • Join the campaign to advocate for equitable treatment access.
  • A QR code and sign-up link have been provided to facilitate participation.

Future Collaboration

  • Doctors and clinicians committed to navigating hospital bureaucracies to submit applications for Trikafta.
  • Strengthened advocacy from the CF community can amplify efforts to negotiate fair pricing and ensure the drug’s inclusion in public healthcare systems.

Dr. Marco Zampoli emphasized the importance of collective action to achieve access for all CF patients and encouraged continued community involvement. SACFA’s collaborative approach aims to overcome public sector barriers and expand access to life-changing therapies.

Patient Empowerment Initiatives

Rida Viljoen

Patient Empowerment and Collaboration

Patient Empowerment Initiatives

  1. Approach to Empowerment:
    • Inspired by the Moroccan proverb, “There is no beauty but the beauty of action,” patient empowerment at SACFA emphasizes action-driven efforts to strengthen the organization.
    • The focus includes listening to patients and families, analyzing global and national trends, and aligning these insights with SACFA’s initiatives.
  2. Global and National Collaboration:
    • Participation in international conferences and workshops to establish partnerships and bring global strategies to SACFA.
    • A structured approach to integrating global insights with national efforts for cystic fibrosis (CF) advocacy and patient care.
  3. Engagement and Feedback:
    • A live poll assessed members’ sense of belonging, with a significant portion feeling fully connected to SACFA.
    • Ongoing initiatives aim to increase member involvement, ensuring SACFA serves as a central hub for all CF patients and families.]

SACFA’s Unique Role

  • As an NGO registered with the Department of Social Development, SACFA is uniquely positioned to act as a legal bridge between the CF community and government bodies.
  • This role allows SACFA to advocate effectively for patient needs, including access to life-saving medications like Trikafta, and prepare for future challenges, such as discussions around the National Health Insurance (NHI).

Call for Volunteers

  • Brain Squad: SACFA’s success depends on collective input, with volunteers contributing ideas, solutions, and action to accelerate progress.
  • Clinic Guardians: Inspired by the success of Anna Marie’s pilot at Steve Biko Hospital, SACFA aims to expand this program to other clinics. Guardians will work closely with healthcare practitioners to improve clinic-specific CF care.

Next Steps

  • Immediate Focus:
    • Advocating for Trikafta access across public healthcare.
    • Leveraging SACFA’s legal and organizational structure to amplify patient voices and influence policy.
  • Long-Term Goals:
    • Addressing broader healthcare challenges like the NHI while maintaining SACFA’s core mission of supporting CF patients.
  • Community Call to Action: Members and supporters are encouraged to volunteer, share ideas, and actively participate in building SACFA’s impact.

Rida Viljoen’s energetic and collaborative approach reinforces SACFA’s mission to create meaningful change for CF patients through empowerment, innovation, and a unified community effort.

Clinic Guardians Initiative

Annemarie Holtzhausen

  • Purpose:
    • Establish a network of clinic guardians to act as liaisons between clinics, SACFA, and families of CF patients.
    • Foster communication on patient needs, clinic updates, and opportunities for collaboration.
  • Role:
    • Serve as the central point of contact for clinics.
    • Communicate with parents and patients during clinic visits to share information and collect feedback.
    • Facilitate sharing innovative ideas or solutions (e.g., medication management tips) across clinics and the broader CF community.
    • Collaborate with SACFA to address urgent needs like medical equipment, nebulizers, or newly diagnosed patients.
  • Impact:
    • Inspired by the pilot project led by Annemarie at Steve Biko Hospital, which showcased the value of a dedicated clinic guardian in strengthening connections and addressing challenges efficiently.
    • SACFA aims to expand the program to include one clinic guardian per facility, with a main guardian connected to the committee to streamline communication.

We are grateful to Annemarie for her passion and dedication.

Strategic Partnerships and Advocacy

  • Consensus Framework Development:
    • SACFA will partner with the Innovative Pharmaceutical Association of South Africa (IPASA) to develop a consensus framework for ethical collaboration in patient care.
    • South Africa will be one of only three African nations pursuing this framework, aimed at aligning government, pharmaceutical companies, and healthcare stakeholders to improve patient outcomes.
    • The project will commence in 2025, with significant implications for ethical practices in patient care.
  • Collaboration with Pharmaceuticals:
    • Continued advocacy to lower the cost of Trikafta and increase access for state patients through ethical negotiations.
    • Aligning strategic goals with global frameworks for patient care and safety.

Call to Action

  • Volunteer Opportunities:
    • Join SACFA’s clinic guardian network or participate in patient advocacy efforts.
    • Support translation and global initiatives like the Patient Safety League Books.
  • Advocacy for State Patients:
    • Unite as a community to amplify voices, pushing for equitable access to life-saving medications and resources.
    • Work collaboratively to ensure SACFA’s initiatives continue to make a meaningful impact on the lives of CF patients and their families.

Committee Roles and Volunteer Opportunities

Team Introduction, Open Roles, and Q&A

Introduction to the SACFA Team

  • Current Team Members:
    • Kim (Chairperson): Leading SACFA’s efforts across sectors.
    • Rita (Patient Empowerment): Driving initiatives to amplify patient voices.
    • Haika (Treasurer): Overseeing financial management.
    • Jolene (Social Media & Brand Manager): Enhancing SACFA’s brand visibility.
    • Alan (Fundraising): Organizing fundraising events like the Cape Town Cycle Tour.
    • Anna Marie (Clinic Guardian): Pioneering the Clinic Guardian program at Steve Biko Hospital.
  • Open Positions:
    • Secretary:
      • Admin-focused role requiring ~4 hours/week.
      • Responsibilities include preparing agendas, taking meeting minutes, and following up on action items.

Volunteer and Committee Opportunities

  • Use the QR code or provided link to:
    • Join the SACFA committee.
    • Volunteer for roles like Clinic Guardian or Watchdog Duty.
    • Support with specific initiatives, such as organizing a CF conference or facilitating outreach in private clinics.

Q&A Highlights

  • CF Conference:
    • Past conferences were linked to lung-related events. SACFA will explore partnerships with pulmonology associations for future conferences.
  • Clinic Guardians:
    • Currently, we are focusing on state clinics to improve access to treatment and engage patients and families.
    • Potential to expand into private clinics based on interest and feasibility.
  • CF Registry Data:
    • The 2021 registry report is available on the SACFA website.
    • 2022 data can be emailed or shared on social media upon request.

Closing Remarks

  • Acknowledgements:
    • Thanks to the committee, parents, patients, and doctors for their continued support.
    • Recognition of volunteers and participants for their contributions during the AGM.
  • Contact Information:
    • Email info@sacfa.org.za, WhatsApp, or follow updates on SACFA’s social media platforms for further queries.

 

View the recording of the meeting: