An Eastern Cape man with a rare cancer who was due to have his last immunotherapy session this week – after an expensive battle and fundraising campaigns by his family to save his life – said he was very disappointed Discovery Medical Scheme had declined to pay for his R1.5m treatment.
His daughter, Minki Fourie, told News24 that despite raising more than R800 000 for his potentially lifesaving treatment, his next bag of immunotherapy this week was possibly going to be his last.
Barry Fourie (74) has completed half of his sessions and is due to have his 11th drip this week, but the Fouries are still R40 000 short for the follow-up. This is despite the retired preacher from Cannon Rocks being a member of Discovery, which won’t cover the costly medication because it says it is not registered for his cancer type.
After numerous appeals, the family challenged Discovery’s decision with the Council for Medical Schemes.
But his case was postponed on a procedural point after Discovery pointed out that the matter was improperly before the appeals committee without a written complaint being filed or an appealable ruling being issued by the registrar.
“The appeals committee must first address this jurisdictional issue to determine its authority to hear the appeal,” said council spokesperson Stephen Monamodi.
“If the Section 48 (of the Medical Schemes Act) appeal is deemed improperly lodged, it will be summarily dismissed. Conversely, if the member’s Section 48 filing is deemed valid, bypassing Section 47, the appeal will proceed to the merits.”
The presiding officer had indicated that a ruling would be issued as soon as possible, Monamodi said.
Fourie said he was dismayed that Discovery was willing to pay for his “smaller medical expenses” but “refused to assist” him as he fights the life-threatening sarcoma, which has decreased by 33% since he started immunotherapy.
“The future is … bleak as we have reached the end of our financial means as a family. My family has saved up almost R1m for my medication, which is working very effectively to maintain my quality of life.”
Why is immunotherapy so expensive?
The Cancer Association of South Africa’s (CANSA) Professor Michael Herbst said there was no truth to the statement that drug manufacturers are only interested in making money.
“Developing immunotherapy treatments is a long and costly process, involving years of research, extensive and expensive clinical trials, and cutting-edge technology,” he said.
“Other aspects that increase the cost of new drug development include salaries of highly qualified researchers, expensive equipment, high-quality raw materials, laboratory space and registering patents.”
During clinical trials, patients do not contribute towards the cost of the treatment.
“Many drugs fail during clinical trials and additional research and development is required to improve on the drug – all adding to the development cost that needs to be recovered. To ensure a return on investment, developers spend a lot of funds on patents, which is very costly, ensuring their exclusive manufacture and distribution of the new drug over a specific period of time.”
Immunotherapy is an approach to cancer treatment that utilises the immune system of the patient’s own body by stimulating and enhancing it to effectively attack and destroy the cancer cells. Herbst said it can be instituted at any stage of the disease and appears to work especially well in later stages of cancer that did not respond well to “ordinary” chemotherapy.
“It works by boosting and modifying the patient’s immune system to recognise cancer cells and ultimately destroy them. It usually has fewer side effects than traditional chemotherapy,” he said.
“Immunotherapy is not a cure for all cancers yet; however, it has shown promise in treating various types of cancer, and those cancers successfully being treated by immunotherapy are increasing by the day.”
Herbst said response rates currently range from 20% to 50% for certain cancers and much more in other cases.
“A 90%-plus success rate is not uncommon for some immunotherapy drugs. It has shown promise in improving survival rates and quality of life for patients, especially those with advanced or non-responsive cancers. Scientists are continually working to understand why some patients respond better than others.”
However, the treatment is still very expensive and not available for the average patient, let alone those dependent on public health treatment options.
“Many immunotherapy drugs cost around R1m for the treatment of a single patient over a one-year period. Most medical aids do not cover these costs – they currently require patients to contribute as much as 50% to 80% or more of the cost.”
According to Herbst, nothing can be done to lower the expense of research and development, apart from more patients using the drugs.
Discounting
Innovative contracting or discounting could be a way to reduce the costs of this treatment if legislation allowed, which it currently doesn’t, said Aspen Pharmacare’s group senior executive Dr Stavros Nicolaou.
“Alternate reimbursement models are presently being discussed with the national Department of Health.
“Co-pay assistance programmes by pharma companies are also another possibility in the private sector and affordable prices (buyouts/tender) can be used in the public sector.”
The launch of cheaper biosimilars – a biological medicine highly similar to an already approved biological medicine – when patents expire for originator products could also help improve access, he added.
“Another possible solution would be for the Department of Health to do appropriate health technology assessment (HTA) appraisals for new technologies – like immunotherapy – and paint a complete picture after weighing the costs and consequences, putting in place thresholds for willingness to pay to improve patient outcomes.
“Currently, there is too much focus on drug acquisition costs when selecting treatments without taking into consideration the outcomes of treatment on these cheaper drugs. If everything is considered in an HTA, immunotherapy might prove to be more cost-effective than it’s currently considered.”
Finding and fixing a predictable public sector volume would also enable a volume-based price for consideration, Nicolaou said.
Most immunotherapy treatments are derived from living organisms that are more expensive to research, develop and manufacture.
The price, however, means the lower-income cancer sufferer has limited access to immunotherapy, he added.
“Even in the advent era of biosimilars, the uptake of immunotherapy in the public sector is still lagging, despite numerous biosimilars being registered and commercially available.”
Dr Noluthando Nematswerani, chief clinical officer at Discovery Health, said the scheme “actively engages” with pharmaceutical companies to negotiate better pricing and improve access to immunotherapy medicines for members as well as those under its administration.
Clinical eligibility for immunotherapy is determined by the treating oncologist based on several clinical factors, including the type and stage of cancer, the presence of specific biomarkers or genetic mutations and the patient’s overall health and immune system status, she added.
“While not effective for all cancer types or patients, immunotherapy has shown remarkable success in treating certain cancers.”
In the event that a member is eligible for immunotherapy but their plan does not include this treatment, they will continue to have access to approved chemotherapy and/or radiation treatments available within their chosen plan, although, in accordance with the rules of the medical scheme, they would also have the option to upgrade their plan type at the end of the benefit year, she said.
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