Kelly du Plessis, founder and CEO, Rare Diseases South Africa (RDSA)

Medical aids are taking advantage of the inefficient and poorly capacitated appeals process facilitated by the Council for Medical Schemes (CMS) as a delay tactic to avoid funding lifesaving treatment for patients with rare diseases, claims Kelly du Plessis, founder and CEO of patient advocacy group, Rare Diseases South Africa (RDSA), which recently launched its #DearMinisterOfHealth campaign. 

The campaign, founded on research-based evidence, aims to build alliances within civil society and engage with policy makers, while also giving patients and healthcare users a voice when it comes to the shortcomings of the private healthcare system in South Africa. The campaign also aims to educate consumers about issues that could face them and their families in the future. 

“The problem is that only people who’ve gone through the process will understand. As a general user of healthcare, you have no idea until one day you need to use the process and find out – and then it’s possibly too late. Patients can wait for years to receive payment from their medical aid for treatment of a rare disease. Without treatment, which is unaffordable during the wait, the condition of patients deteriorates to the point where some die or cannot be treated,” says du Plessis. 

“We are aware of approximately 90 patients with rare diseases, and because of the cost of treatment, we pick up a lot of push back from medical aids. With so many elements of our healthcare system being complex, often patients are not informed of their healthcare rights and responsibilities. When patients need to appeal against a decision by their medical aid, they are obliged to go to only one regulator – the CMS – which can take up to 120 days just to hear a case. That’s six months. Many patients don’t have six months,” says du Plessis. 

Yet, that initial process is well regulated, with a defined turn-around time. As with all legal processes, a decision against one can be appealed and it is this appeal process that are not regulated by defined turn-around time and take years to reach a verdict. 

“The appeals process can take up to two years. By that point, we’ve had patients who have lost their ability to walk and talk. We’ve even had patients die. That’s why we have created this campaign,” says du Plessis. 

“There needs to be engagement between all stakeholders, including government, pharmaceutical companies and medical aids about both immediate issues as well as longer term concerns such as sustainability. This will go a long way in resolving the systemic issues, which often have far reaching consequences,” says du Plessis.  

Of major concern is the fact that the CMS does not have the resources to make rulings timeously or the authority to enforce them. As a result, du Plessis notes, medical aids are simply fined – sums they are happy to pay because they are less than the costs of the treatment needed. 

“We believe that medical schemes are using the state of the current system to their advantage to delay covering expenses incurred by their members, with many waiting until the very last day of an appeal to amend a decision. More alarmingly, the current CMS complaints procedure has been proposed for dispute resolution within the NHI. So, while the CMS is currently only regulating medical schemes, the process, if not fixed and strengthened now, will be even harder to rectify once NHI is implemented,” says du Plessis.

Sanofi, a leading, multinational pharmaceutical company in South Africa, which focuses on 15 key therapeutic areas including diabetes, mental health, tuberculosis, rare diseases, vaccines and self-care, supports the campaign. 

“Every disease should have a treatment, if not a cure. Our passion is to prevent, treat and cure illness and disease throughout life. We are driven to improve the health of communities and to find new solutions for patients by combining breakthrough science with advanced technology. We are always working to find new ways to fight chronic, complex and rare diseases with treatments that offer hope for patients in the future of healthcare,” says Dr Michael Klein, General Manager for Specialty Care at Sanofi.

Dr Klein says extensive research and development is required to create these life-saving treatments, which are only required by a small percentage of the population.

“Sanofi is in support that all patients should have access to treatment because we know and understand the need for patients to be treated. That is why we are not only looking for funders to do their part. In many cases where medication or treatment is out of reach, we are making it accessible or even providing it for free. Sanofi is currently carrying the costs of treatment for a number of patients with rare diseases in the public healthcare sector at no cost to the patient,” says Dr Klein.