Only one of the 13 public hospitals treating childhood cancer in South Africa has a blood bank on site, and just three have transplant beds.
These shocking findings, from the PRoFILE facility survey reported to the November 2024 Leukaemia Think Tank, are where a short 10-minute film – The Cost of Survival: Access and Inequality in Leukaemia Care – begins.
Released this past Sunday by Campaigning for Cancer (C4C), it hears from patients, families and clinicians about what it costs to be treated for leukaemia in South Africa, and how much of that cost is decided by the health system of the patient.
The second film from Campaigning for Cancer, it was released to coincide with World CML Day, marked on 22 September for the exchange between chromosomes 9 and 22 that causes Chronic Myeloid Leukaemia.
About 86% of South Africans treated for leukaemia use the public sector, where the first generation drug, imatinib, is widely available, and second generation agents and BTK inhibitors are not. The gold standard is available in the same country as the patients who cannot reach it.
“Leukaemia is one of the cancers medicine already know how to treat,” said Lauren Pretorius, Chief Executive Officer of Campaigning for Cancer. “But what decides whether a South African survives it is not the science. It is how fast they are referred, whether the laboratory can tell the doctor which leukaemia they have, and whether the medicine they need is on the shelf.
“Every one of those factors is the consequence of a decision somebody made, which means every one of them can be changed.”
In the documentary, Dr Perry Loebenberg, a haematologist at Constantiaberg Mediclinic in Cape Town, says the whole of society needs to invest in our public health.
“And then we need a healthcare insurance model which is really accountable to provide the highest level of care possible, not the barest minimum,” he added.
He pegs the cost for certain newer therapies for chronic lymphocytic leukaemia at R60 000 to R70 000 a month.
“Financially, this has crippled me,” says Grace Mabela, one of several patients whose experiences are followed in the films. Her daughter was treated for acute lymphoblastic leukaemia in the state sector.
At one centre, 34.5% of children who met the criteria for a transplant did not receive one.
Campaigning for Cancer is asking for two changes that would make survival less dependent on which system treats a person:
Review the Essential Medicines List for leukaemia so that state patients are not restricted to first generation therapy, and pilot alternative reimbursement models as an equity tool.
Replace the age 65 cap on stem cell transplant with a clinical fitness assessment, and close the gap between patients who qualify for transplant and patients who receive one.
Both come from the five asks agreed at the 2024 Leukaemia Think Tank by clinicians, patient organisations, medical schemes and the Department of Health. All five are in the C4C policy brief.
Issued by Campaigning For Cancer