1. POLICY ADVOCACY FOR BREAST CANCER IN SOUTH AFRICA WE CAN | APRIL 2016 | NAIROBI, KENYA Louise Turner Breast Health Foundation Breast and Cervical Cancer Survivor

3. Advocacy group born in SA Highlighted the need for a National Breast Cancer Policy 2013 - Reach to Recovery International Conference Cape Town NGO’s held a meeting with the Minister of Health to call for a National Breast Health Policy 2014 – March 8 Breast Cancer NGO’s, working across the cancer continuum of care, formed a coalition Advocates for Breast Cancer

4. The organisations involved are: amaBele Belles Breast Health Foundation Breast Course 4 Nurses Cancer Association of South Africa (CANSA) People Living with Cancer incorporating Cancer.vive Pink Drive Reach for Recovery Wings of Hope

5. Advocates for Breast Cancer The purpose of the ABC is “ To advocate and lobby for an equitable and sustainable breast health policy for South Africa.” Training of breast organisations in advocacy and communication skills Empowering the general population in breast health advocacy issues linked to the cancer continuum of care. This activity is linked to the already established “blogforbreastcancer” and other social media such as Facebook and Twitter Lobbying of the Chief Director: Women’s, Maternal and Reproductive Health for the establishment of a policy development process.

6. Breast Cancer in South Africa Breast cancer and advanced Breast Cancer in South Africa is largely under reported National Cancer Register is not up to date Highest cancer incidence and mortality for women. 85 % of women have to access health services through the public sector. 15 % have access to private health care Access is limited according to geography Metropolitan versus rural Total Population: 55 million

7. Public Health – 85 %Private Health – 15 % Mainly located in tertiary hospitals, Major city centres Mainly in Metropolitan areas Breast services not available in all provinces Breast services available in most private hospitals 60 % present with Locally Advanced Breast Cancers 20 % present with Locally Advanced Breast Cancers Access to Breast Clinics – 9 Provinces

8. Public Health – 85 %Private Health – 15 % Subsidised by the government according to income Scale according to Medical Aid rates H0 – Pensioners FREE H1 – Minimum Wages R45 / $ 3 H2 – According to income R 185 / $13 H3 – Private (higher income) R 299 / $ 21 Consults Specialist + R 1 200 / + $ 84 Mammogram /Ultrasound +/-R 1 600 / $112 Breast Surgery + R 40 000/ +$2800 Annual Thresholds: AVERAGE Oncology benefits R 480 000 / $ 33 500 Co-payments 20 % above threshold Surgery Unlimited with pre-auth Average depending on scheme Costs

9. Our unique problems Sustainability does not mean that affordability must be the first principle There should be a focus on optimum care where we refer to the 4 P’s = Patient (first) Public Private Partnerships The highest quality of care must be provided to support the envisioned outcome of Improved quality of life and Reducing morbidity and mortality of SA women – the fibre of our nation

10. Our focus Equality between all 9 provinces – public and private sectors Sustainability An implementation pathway that promotes budget and resource allocation does not mean that affordability must be the first principle Clinical guidelines should be according to International Best Practice models A process of renewal / updating of the policy guidelines on an annual basis Approval and adoption of the WHO Essential Medicine List Regular Monitoring and Evaluation of implementation Effective referral pathways across the cancer continuum that is timeous and ensures access to treatment for all women

11. Principles of Policy Development Promote the Breast Health Global Initiative ( BGHI ) guidelines for Low to Middle Income Countries Policy should be developed by a Multi-disciplinary team of Medical Professionals, Government, Advocates and Civil Society

12. What we do Advocacy, communications training and capacity building of volunteers associated with member organisations and the communities they serve Empowering and educating the community about issues related to breast health through: Talks, events Dedicated “blogforbreastcancer”, Face Book and Twitter Focus on the cancer continuum of care and specific advocacy issues Stakeholder meetings Participate / lobby / partner / negotiate

13. Achievements to date Agreement and commitment by Department of Health to develop a National Breast Health Policy - 2015 ABC represented at the national meetings 100 Advocates trained nationally Partner with “Fix the Patent Law” Campaign World Cancer Day video focused on trustuzumab (unavailable in Public Sector)

14. Letters to Minister of Health on: Need for National Breast Health Policy Availability of trustuzumab (Herceptin ) 2 Advocates have given evidence at the UN High Level Meeting Access to medicine in Johannesburg Availability of trustuzumab Achievements to date

15. ABC organisations participated in a picket at ROCHE Head Office in Johannesburg re: affordable cost of trustuzumab (Herceptin) ABC invited to a meeting with the Minister of Health regarding cancer issues – February 2016 Social Media 4 290 regular subscribers to our dedicated blog “blogforbreastcancer” 800 plus Face Book followers

16. Progress to date 1 ST April 2016 Meeting with Minister of Health Dr Aaron Motsoaledi and Government representatives to discuss National Cancer Control Plan and National Breast Health Policy 21 st April 2016 Draft policy - POLICY FRAMEWORK AND STRATEGY ON CANCER IN SOUTH AFRICA sent to Cancer Alliance for comment First draft - BREAST CANCER PREVENTION AND CONTROL POLICY sent to ABC for comment

17. “Voice of the Voiceless”

18. THANK YOU BLOG: http://blogforbreastcancer.wordpress.com TWITTER: @BreastCancerABC | FACEBOOK: @AdvocatesForBreastCancer