Rare Diseases South Africa face off against medical aids
Many patients do not have the time to appeal non-payment from medical aid schemes.
Mounting medical costs is stressful for any person faced with a disease but gaining access to life-saving medical care, as a person with a rare disease can be cumbersome.
According to Kelly du Plessis founder and COE of the patient advocacy group, 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). They use it as a delay tactic to avoid funding life-saving treatment for patients with rare diseases. This was leading to the recently launched #DearMinisterOfHealth campaign.
“The campaign, founded on research-based evidence, aims to build alliances in civil society and engage with policymakers. This will also give patients and healthcare users a voice on the shortcomings of the private healthcare system in the country,” said Du Plessis.
“Patients can wait for years to receive payment from their medical aid for the 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.”
She continued by saying that the organisation is aware of approximately 90 patients with rare diseases and because of the cost of treatment, some medical aids refuse to pay.
“With so many elements in our healthcare system being complex, patients are often not informed of their healthcare rights and responsibilities,” she said.
“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 six months to hear a case. The time that many patients do not have.”
The campaign aims to engage with all stakeholders, including government, pharmaceutical companies and medical aids about both immediate issues as well as longer-term concerns such as sustainability.
One of RDSA’s major concerns is that the CMS does not have the resources to make rulings timeously or the authority to enforce them.
“As a result, medical aids are fined – amounts that they are happy to pay because it is less than the costs of the treatment needed,” said Du Plessis.
For more information email hello@rarediseases.coza or call 072 476 7552.
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