Campaigning for Cancer: Giving South African Patients a Voice
Until 2008, no organisation advocated for patients with cancer in South Africa. In an effort to address this, Lauren Pretorius, chief executive officer (CEO) of Campaigning for Cancer and two others, organised a stakeholder conference to discuss patient advocacy.
“It was the first time patients, funders, medical schemes (the name for private health insurance), government, pharmaceutical companies, doctors and healthcare providers had ever been asked to attend a conference together to discuss cancer,” said Lauren.
At the end of the conference at which international speakers had presented on what patient advocacy was and how it worked, Lauren and her two colleagues realised that there was a need to have one organisation that would specifically advocate for all patients with cancer living in South Africa.
“That’s how Campaigning for Cancer came into being,” said Lauren who has been CEO of Campaigning for Cancer since 2011.
Campaigning for Cancer’s Objective
Campaigning for Cancer is an advocacy organisation whose objective is to give South Africans with cancer and others affected by cancer a voice. Campaigning for Cancer achieves this by lobbying for the promotion and protection of the rights of patients and those affected by cancer with regard to policy, healthcare costs and healthcare delivery.
“When we started Campaigning for Cancer, we wanted a place where people with cancer could expect fair and appropriate treatment. The way we saw to achieve that was through dialogue, the facilitation of solutions and representing patients in things like policy and healthcare delivery because their voice wasn’t being heard,” said Lauren.
Prior to starting Campaigning for Cancer, Lauren, a nongovernmental organisation (NGO) strategist by training, had worked with various NGOs in South Africa that focused on cancer but from the perspective of education and awareness.
“I realised that very little was being done to advocate for the rights of South African cancer patients, in relation to screening, diagnosis and access to treatment as afforded to them in our Constitution,” she said.
Helping Lauren are four permanent staff, a nine-member Board of Directors and companies that offer in-kind services.
“We have about four or five organisations that provide in-kind services such as legal advice and advertising assistance,” said Lauren and, in return, these organisations receive a tax rebate.
Providing in-kind assistance also helps organisations demonstrate their participation in Broad-Based Black Economic Empowerment (BBBEE). BBBEE was put in place by the South African government to help address the wrongs committed against blacks during apartheid, a system that segregated and discriminated against blacks and others based on their race. The intention of BBBEE is to help South Africa reach its full potential through bringing the previously disadvantaged majority into the economic mainstream.1
“As part of BBBEE, companies that want to win government contracts have to undertake certain things one of which is giving to charity,” said Lauren.
Giving Patients a Voice
While South Africa developed a Patients’ Rights Charter as a guide to the rights afforded to South Africans in terms of its Constitution, few were consulted in its development.
“That is why Campaigning for Cancer developed its own patient charter. It was our starting point to say that we as patients are having a say and this is what we need,” said Lauren.
The South African Patients’ Rights Charter is enforceable because everything stated in it can be linked back to a right granted to patients in South Africa’s Constitution.
“The challenge is whether patients know those rights and that’s where Campaigning for Cancer plays a role,” she said.
Campaigning for Cancer helps patients who, at some point on their cancer journey, may have been denied a right such as treatment, information or faced discrimination.
“We work with those patients - from both the public and private healthcare systems - educating them on what their rights are and why the denial is wrong. We then look at the steps that need to be taken to address the denial,” said Lauren.
For example, if a patient did not receive radiation therapy as scheduled, Campaigning for Cancer would approach the Minister of Health and the National Department of Health explaining the problem.
“If the problem remains unresolved, Campaigning for Cancer would obtain a court interdict,” she said.
In 2014, Lauren estimated that 500 people approached Campaigning for Cancer for help.
South Africa’s Public Healthcare System
South Africa has a two-tiered healthcare system: public healthcare and a number of medical schemes that make up the private healthcare system. Only a very small proportion of the population (approximately 8.8 million or 16.9%) belong to medical schemes leaving more than 43 million people uninsured and reliant on the public healthcare system.2,3
Those using the public healthcare system are confronted by a number of challenges.
“Patients enter the primary healthcare sector staffed by nurses who’ve received, in some cases, two weeks of training in cancer. The chances of those nurses picking up the symptoms of a cancer that is not breast, cervical or prostate and not very advanced are minimal,” said Lauren.
After being seen by a healthcare professional at a primary facility, the patient is then referred to a district hospital where diagnostics are undertaken. Depending on where the patient lives, the patient may need to travel great distances to obtain the diagnostics.
“Once the diagnostics have been performed and the results received, the decision is then made as to whether the patient will receive treatment which requires going to a tertiary hospital of which there are only about six providing cancer treatment in South Africa,” she said.
In most instances, patients have to pay for all their own travel; public healthcare pays for the screening and the treatment of patients who demonstrate they do not have the means, i.e., they make less than US$3,000 (R36,000) per annum.
Unfortunately, those using the public healthcare system are not guaranteed the best care.
“There are staffing shortages and some of their knowledge and skills in relation to cancer diagnosis and treatment are not good at the primary healthcare level. In some cases, there is no diagnostic resourcing and with treatment, there is only a small number of therapies available at the treatment centre and patients don’t get access to current therapies,” she said.
Lauren estimates that the average timeline from the time the patient first enters the public healthcare system to the moment they receive treatment for their cancer is 18 months.
“By the time patients reach the treatment facility, many have advanced disease and are treated palliatively.This is particularly true for lesser known cancers such as lymphoma, ovarian and pancreatic.” she said.
Where there is a beacon of hope is with children who develop a cancer such as lymphoma as treatment has been effective with positive outcomes.
“The problem with childhood cancer, though, is that there is a belief that children don’t get cancer,” she said.
On average, each year, only 600 children are diagnosed with cancer.
“This is well below the norms so there is underreporting and underdiagnosis which means children are dying in their homes,” she said.
Private Healthcare in South Africa
Those with means can obtain healthcare services through medical schemes, South Africa’s private healthcare system.
“Medical schemes are regulated by the Council of Medical Schemes which has an ombudsmen, in the form of the Registrar of the Council for Medical Schemes, and medical schemes are regulated by an act of parliament. In fact, the private healthcare system is far more regulated than the public one,” said Lauren.
Within private healthcare sector there are 23 open medical schemes and 65 restricted ones.4 Open schemes are for any member of the public; restricted schemes are for groups of professionals. Employers do not provide full medical scheme benefits but they may pay a portion.
“Regardless of whether it’s an open or restricted medical scheme, no one can be excluded because of a pre-existing condition or because of age, everyone is accepted as equal,” said Lauren.
Within each medical scheme, there is minimum level of benefits that each one has to provide called a prescribed minimum benefit (PMB). PMB includes 270 conditions and how they should be treated as well as 25 chronic and emergency medical conditions.4
To join a medical scheme, members pay a fee, and depending on how much they pay, they are entitled to a certain number of benefits. For example, if someone pays R1,500 a month to visit a doctor they can go 10 times a year; to have unlimited visits, one would have to pay more. Any needed in-hospital care would be provided through a private hospital.
“If I need to get a prescription filled, the medical scheme I belong to pays up to a certain level - R20,000 per year for day-to-day medicines and R400,000 for oncology treatment - but I can only get the medications that are on my plan’s formulary,” she said.
In addition to paying fees to join a medical scheme, members pay taxes which go towards funding the public healthcare system.
Stigma of Cancer
A number of myths and stigmas exist among the different racial groups about cancer.
“Some white people believe that only black people get cancer while some black people believe it’s a white person’s disease,” said Lauren.
Among the black community, there is a belief that cancer is curse on them.
“It is a curse from their ancestors because they have done something wrong,” she said.
In the Indian community, while cancer has less of a stigma, the bigger issue is the lack of rights for women.
“The husband makes the decision as to what treatment his wife should receive. This also happens in the black community but to a lesser degree,” she said.
Lack of education and the perception about cancer can also impede effective treatment.
“Someone who has been educated in a more urban, economically vibrant environment, is often aware of cancer opposed to those in rural areas; however, due to delays in seeking medical attention as well as myths that exist about the disease, many see a diagnosis of cancer as a death sentence,” she said.
Lauren believes that the NGOs can do more to address the stigmas.
“As South African civil society, we’ve done a lot of disease education but we haven’t addressed the social impact of cancer. For example, a woman may know about breast cancer, feel a lump but won’t go to the doctor because she’s afraid her breast will be removed and if she dies, she won’t be recognised in heaven and, therefore, won’t get into heaven. So, she would rather die with her body intact,” she said.
Campaigning for Cancer has been running a myths and stigmas campaign for the last two years which has led to increased awareness.
Healthcare Challenges with Cancer
While there are pockets of excellence, Lauren doesn’t feel South Africa is getting it right when it comes to meeting the healthcare needs of South Africans with cancer.
“What is changing is that there now seems to be a willingness to start getting it right which is a big change from where we started in 2008 when there wasn’t any focus on cancer,” Lauren said.
Until 2008, HIV/AIDS was the focus and government had no interest in talking about cancer.
“AIDS activists did an amazing job and achieved a lot for those with HIV/AIDS. But when patients for other diseases started advocating, there was a lot of push back from stakeholders saying they didn’t want another situation like HIV/AIDS,” she said.
Lauren has sat in meetings, where if an organisation had the word advocacy in its name, stakeholders wouldn’t talk to them as they were scared there would be protests similar to those that happened for HIV/AIDS.
“Now stakeholders are more receptive to our organisation because we, as cancer advocates, have had to take a less activist approach and a more advocacy approach through dialogue. It’s a slower process but it’s the only way we could do what we had to do to open the door,” she said.
Slow Approval of New Medicines
Currently, it can take up to three years for a medicine to receive regulatory approval and then another two years before it receives funding approval.5,6
In 2012, plans were announced to improve the approval times by tripling the number of workers at the medicines regulator, the Medicines Control Council (MCC) and to replace the MCC with the South African Health Products Regulatory Authority (SAPHRA) which would have a permanent staff of approximately 400 compared with the MCC’s staff of 150.7
“While the change has been constituted and enacted, it has not yet been set up although the Act says it must exist,” said Lauren.
For a medicine to receive regulatory approval, a new medicine application is submitted to the MCC. Once accepted, a decision that can take as long as 100 business days, the application is then reviewed by five different committees as well as expert evaluators who provide recommendations to each committee. The applicant has to respond to any questions each committee may have. This part of the process can take 360 business days. Each of the five committees then makes its recommendation for approval to the MCC. If the recommendations are positive, the MCC approves the medicine and marketing authorisation is granted. This part of the process can take up to 360 business days.5
For a new therapy to then receive reimbursement approval a Single Exit Price (SEP) has to be negotiated with the government.
“The pharmaceutical company submits the SEP to the National Department of Health. This is then approved or denied. Once the SEP has been set the medicine may be sold with no mark-up by dispensing facilities to the private sector. A tender process is undertaken for provision to the public sector, which includes a further potential price negotiation potentially below the set SEP,” she said.
In the private sector, the issue is whether the different medical schemes will reimburse the medicines.
“Every medical scheme has to be seen by the pharmaceutical company and each one negotiated with in order to get the new drug on the medical scheme’s formulary as well as part of treatment protocols,” she said.
In the public sector, the tender process is put out every two years.
“The tender gets awarded but that doesn’t mean the medicine is available in the hospital because each hospital has to decide whether to include it,” she said.
In addition, Lauren noted that South Africa’s Department of Health does not tell each province how to spend their healthcare budget, it’s for the province to decide.
“While a cancer drug might be tendered at the national department, the province may decide that they are not buying certain cancer medicines that year,” said Lauren.
But Campaigning for Cancer will take a stand if it’s a life changing drug.
“If the medicine will change the life expectancy of a patient, then we will advocate for it,” she said.
Of the newer therapies available for the treatment of lymphomas, only bendamustine has received regulatory approval in South Africa but not reimbursement approval.8
Need for More Clinical Trials
Currently, 13 clinical trials are underway in South Africa, an improvement over the seven trials that were available in 2014.9
While more clinical trials are needed, a change in the attitude of stakeholders is also required.
“In South Africa, there is a mindset that clinical trials should only be accessed through a doctor; that is to say, the doctor should be telling the patient about the trial not the patient telling the doctor,” Lauren said.
And even if the patient does find out about a clinical trial, if the patient’s doctor is not participating in the trial or is not particularly proactive, the patient won’t be able to enter the clinical trial.
Campaigning for Cancer’s 2015 Plans
Every year, Campaigning for Cancer runs three programmes. The first programme focuses on access to information and knowledge sharing. Its purpose is to help ensure patients know where to go and what to do at any stage of their cancer journey. As well, Campaigning for Cancer makes stakeholders aware of any problems encountered when talking to patients.
“This service is provided through a call centre we run as well as information we put out to the public,” said Lauren.
As part of the knowledge sharing component, Campaigning for Cancer undertook a survey examining the issues facing those diagnosed with cancer in terms of doctors’ knowledge, attitudes and practices when it came to prescribing and accessing treatment and decision making following diagnosis. The findings from the survey will be published sometime in 2015.
The second programme addresses lobbying.
“There are a few areas we’re looking at: the development of a national cancer control plan with stakeholders including government; the effective running and updating of our national cancer registry and ensuring that our essential medicines lists are up-to-date,” she said.
Advocate development is the third programme Campaigning for Cancer will be undertaking.
“We hope to train 15 volunteer patient advocates in 2015/16 who, eventually, will be available throughout the country,” said Lauren.
“We would train them and ensure that part of the training includes addressing specific myths and stigmas,” she said.
Initially, the patient advocates will be based in two of South Africa’s three capitals: Pretoria, South Africa’s administrative capital and Cape Town, South Africa’s legislative capital and where parliament is based. Advocates will also be based in Gauteng, one of the nine provinces in South Africa.
Getting the Word Out
People find out about the work Campaigning for Cancer undertakes through word of mouth and from healthcare practitioners and other stakeholders, such as political parties or insurance companies.
“We do advertise our services among NGOs so they know about what we do and they promote our services when they go into remote communities,” Lauren said.
Thank you Campaigning for Cancer for all your efforts to give South Africans with cancer a voice and to help them obtain the care they need.
SouthAfrica.info. http://www.southafrica.info/business/trends/empowerment/bee.htm#.VTfB2CFViko. Accessed April 23, 2015.
Big portion of medical aid contributions spent on huge salaries for trustees: report. Times Live. September 7, 2014. http://www.timeslive.co.za/local/2014/09/07/big-portion-of-medical-aid-contributions-spent-on-huge-salaries-for-trustees-report. Accessed May 20, 2015.
Ogunbanjo GA. National Health Insurance (NHI): Time for reflections! S Afr Fam Pract 2015;57. http://www.ajol.info/index.php/safp/article/viewFile/114669/104338. Accessed May 20, 2015.)
Council for Medical Schemes. http://www.medicalschemes.com/MedicalSchemes.aspx?flt=A. Accessed April 23, 2015.
Lymphoma Coalition. South Africa Regulatory Drug Approval Process PDF. http://www.lymphomacoalition.org/global-information/global-report/2013-global-report. Accessed April 23, 2015.
South Africa Drug Funding/Reimbursement Approval Process PDF. http://www.lymphomacoalition.org/global-information/global-report/2013-global-report. Accessed April 23, 2015.
South Africa tackles drug delays. http://www.reuters.com/article/2012/05/29/ozatp-safrica-medicines-idAFJOE84S06820120529. Accessed April 23, 2015.
2014 LeIP Report Card on Lymphomas. http://www.lymphomacoalition.org/global-information/global-report/2014-global-report. Accessed April 23, 2015.
2014 Special Report on Clinical Trials. http://www.lymphomacoalition.org/global-information/clinical-trials. Accessed April 23, 2015.
June 29, 2015