What is Cancer Advocacy?
Advocacy is an activity by an individual or group which aims to influence decisions within political, economic, and social systems and institutions. Health Advocacy supports and promotes patients’ health care rights, and enhances community health and policy initiatives that focus on the availability, safety and quality of care. The Cancer Alliance has adopted a human- rights based approach to cancer care that acknowledges that access to services is a matter of social justice, and gives voice to the voiceless.
Advocacy Toolkits provides fact sheets, policy briefs and notes on how to meet the challenges, aimed at policy and decision makers. These are supported by sample stories drawn from the PhotoVoice research. This is completed by providing suggested social media messaging which you can use in your involvement in our call Let’s Talk About Cancer. The role of these Toolkits are to provide a voice to the voiceless. And to bring action and change to the areas that need it most.
YOUR RIGHTS AS A CANCER PATIENT
ACCESS TO MEDICINE
PHOTOVOICE
YOUR RIGHTS AS A CANCER PATIENT
The National Department of Health (NDOH) has put much effort into producing a series of national policy and framework documents which have direct relevance to cancer patients in South Africa. These include the following:
- The National Cancer Strategic Framework for South Africa – 2017-2022
- The National Policy Framework and Strategy on Palliative Care – 2017 – 2022
- The Breast Cancer Control Policy 2017
- The Cervical Cancer Prevention and Control Policy
- Policies for Childhood Cancer and Prostate Cancer are on the horizon for 2018-2019
- Further policies are envisaged for the future, to complement the National Cancer Strategic Framework for South Africa.
In the Advocacy Toolkit: Part 2 the Cancer Alliance unpacks the most important content of each policy, provides some indications of additional work and support to ensure the success of the policy, and provides suggested social media messages which can be used to further raise awareness of the policy. Patient stories are also provided to demonstrate how each policy can assist to improve cancer services to patients.
Toolkit material for each national policy / framework will be released on a monthly basis during 2018-19.
National Cancer Strategic Framework for South Africa 2017-2022
National Policy Framework and Stratergy on Palliative care 2017-2022
CERVICAL CANCER
BREAST CANCER
PALLITIVE CARE
ACCESS TO MEDICINE
The Access to Cancer Medicine Report focuses on these two key determinants of access in the public and private sector. Findings related to access include the fact that just 10 hospitals in South Afriica provide cancer care for 84% of the population. The medicines available for treatment are regulated by the Essential Medicines List, based on the model list suggested by WHO and based on affordability. The private sector serves 16% of the population who belong to nearly 75 different medical schemes. These schemes, ruled by the Council of Medical Schemes have the ability to approve the latest cancer treatments available, even when they may be too expensive for most patients to afford.
The oncology pharmaceutical industry represents only 1% of the market – yet seven of the most expensive speciality medicines are for oncology. The report further investigates the impact of patent law and use of competition law to ensure access to medicine.
With cancer incidence set to increase exponentially in the next 10 years, now is the time to re-enigineer cancer care services within the proposed NHI. Recommendations for key role players such as SAHPRA, key government departments and Industry are offered to kick-start this debate.
In 2017 the Cancer Alliance and Fix The Patent Laws jointly published a study of 24 life-saving cancer medicines. The research showed that only seven of these 24 medicines are available in the public sector – where 84% of South Africans access medical treatment. Private sector patients have access to 21 of these drugs. In spite of 10 of the medicines being on the WHO essential medicines list, only four of them are deemed essential in South Africa.
Of the 24 medicines, 15 are available in India for less than half of the price offered to the South African private sector. In the most extreme case, a year’s supply of lenalidomide is priced at R882,000 in South Africa and less than R32,000 in India. Ten of the medicines that are not available in the South African public sector are available in India for less than half the price offered to the South African private sector.
Fix the Patent Laws is a campaign co-founded by SECTION27, Treatment Action Campaign (TAC) and Doctors Without Borders (MSF) in 2011. Since then, the coalition has grown to include 38 other organisations fighting together to push South Africa to amend its patent laws to prioritise public health. You can follow posts by Fix the Patent Laws at this address: www.fixthepatentlaws.org.
access to cancer medicine report
https://www.youtube.com/watch?v=hW_iEPoFaHo&t=11s
BIOSIMILARS
BIOSIMILARS ARE PHARMACEUTICAL PRODUCTS THAT ARE
ALMOST IDENTICAL COPIES OF EXISTING MEDICINES.
Cancer Alliance publishes the first fact sheet on biosimilars in South Africa. The approval and availability of biosimilars will influence access and affordability of lifesaving medicines. Patients, clinicians and funders need to informed about these new opportunities to ensure that patients always have access to affordable, safe, efficacious and quality medicines. The approval of the first significant biosimilar for trastuzumab opens the opportunity for competition in the market. This will certainly pave the way for other biosimilars.
LIFE-SAVING MEDICINES ARE OUT OF REACH FOR MANY
Medicines are critical to the fight against cancer. Having access to the right medicine at the right time can literally make the difference between life and death. Over the years medical science has given us many valuable medicines in the fight against cancer. Their names are not as well-known as aspirin or penicillin, having complex and unpronounceable names such as Lenalidomide, Trastuzumab and Octreotide, but to cancer patients they are as valuable as gold. So having access to these drugs, and being able to afford them, is critical to every patient.
Nevertheless we find that many of these life-saving drugs are not available in South Africa, or they may only be available in the private sector. And even if they are available they may be so expensive that only the rich or those with substantial insurance can afford them. For those who cannot access these drugs we have no answers. The reasons why they are so expensive, and why they may not be available, are complex, and solutions are not easy to find. This is the purpose of the Access to Medicine (A2M) Campaign.
MOTIVATION FOR: PROMPT APPROVAL OF TRASTUZUMAB BIOSIMILARS TO PROMOTE COMPETITION IN THE MARKET
17 July 2019: Cancer Alliance submits a motivation to SAHPRA…
FIRST BIOSIMILAR DRUG APPROVED IN SOUTH AFRICA BUT PRICE IS STILL HIGH
Teva Pharmaceutical Industries has obtained approval to sell the…
https://www.youtube.com/watch?v=MWOIL954Hmc
MEDICINES CHOSEN FOR THIS CAMPAIGN
Eight medicines have been chosen: These are considered to be priority medicines for cancer at this time, and address the most prevalent cancers and burden of disease in South Africa. Listed together with the cancers they are commonly used to treat they are:
- Breast cancer – Trastuzumab
- Prostate cancer – Abiraterone acetate
- Multiple Myeloma – Lenalidomide
- Non-Small Cell Lung cancer – Erlotinib
- Lymphoma – Bendamustine
- B-cell Lymphoma – Rituximab
- Melanoma – Ipilimumab
- Treatment of secretory neuroendocrine tumours – Octreotide
Multiple Myeloma – Lenalidomide
Breast cancer – Trastuzumab
Lymphoma – Bendamustine
PHOTOVOICE
RESEARCHERS LB EDWARDS & LE GREEFF (Ethics review: MRC SA EC006-3/2014)
Frequent late stage presentation and high mortality make cancer a serious public health issue throughout Africa and South Africa is no exception [1,2,3]. Due to the lack of research on the needs and challenges of cancer patients in SA, it is difficult to appreciate the scale, scope and consequences for our population [4]. The shortage of evidence-based research makes it very difficult to persuade the government and other stakeholders to respond to the crisis of cancer control in the country.
This research was undertaken as a volunteer-driven project directed at gaining an understanding of the interface of cancer and people’s ordinary life. The purpose of this research is to heighten the profile of cancer on the South African health care landscape, and to promote the importance of good quality cancer control and care standards. While financial grants were received in support of some phases of the project [i.e. 476 Charitable Trust & CANSA] no researcher or volunteer was remunerated for their professional or other services. Participants provided written consent for the publication of their photo-stories and are free to withdraw this consent at any time.
As a well-tested international advocacy instrument, PhotoVoice methodology [5,6] was used as a tool for the collection of personal accounts of cancer-related challenges. Other than using the PhotoVoice interviews as support material for a variety of advocacy initiatives (as illustrated in this toolkit), the narratives of the PhotoVoice stories have been subjected to thematic content analysis [7], and the findings are currently under review for publication and have already been made available to a wide variety of stakeholders and decision-makers.
316 participants were interviewed across South Africa over a 4-year period offering a unique opportunity for ordinary people to have their say and for their voices to be heard. These stories are not meant to be a complete picture of a person’s cancer journey, but represents personally chosen comments. The photo-stories displayed in this toolkit are a selection of voices that offer grassroots evidence for the identified priority issues.
PhotoVoice Book1
PhotoVoice Book2