An urgent application was brought to the High Court by the mother of a three-year-old child (“Z”) who has been diagnosed with a rare genetic condition, Hunters Syndrome MPS II (“MPS II”). Z has been a member of the respondent medical scheme from the date of his birth by virtue of his mother’s membership.
The court ordered the Scheme to pay for the costs of the only registered treatment for MPS II which is an expensive enzyme replacement therapy, Elaprase, proven to slow or even halt the progressive degenerative consequences of MPS II.
When Z was diagnosed with MPS II, his mother lodged a request for authorisation by the scheme to pay for the treatment . The request was denied.
During this time, the Council for Medical Schemes was considering a similar matter involving another medical scheme.CMS found that MPS II is a prescribed minimum benefit and the medical scheme in question was ordered to pay for Elaprase as well as all ancillary symptomatic treatment.
Following the decision by CMS, Z’s mother once again submitted an application for authorisation of Z’s treatment which was declined. It was noted by Z’s doctors that Z’s condition, if left untreated, will “result in further decline of cardiac, respiratory and neurological symptoms decreasing his life expectancy” which prompted Z’s mother to bring this application to court
The Scheme defended its decision to decline authorization for Z’s treatment by arguing that Elaprase is not the prevailing and preferred treatment protocol in the public healthcare sector and that treatment in the public sector is palliative.
The mother relied on affidavits from expert medical professionals in the public healthcare sector which confirmed that Elaprase is the only available treatment for MPS II in both the public and the private sectors and that it is supplied to more than one public healthcare facility in each of South Africa’s 9 provinces, despite the rarity of MPS II.
The court found therefore that:
Elaprase is both available and used both by the private and the public healthcare systems to treat MPS II;
Given that the condition is so rare, it is hardly surprising that the number of patients for whom it is prescribed is so low;
It is self-evident that if “prevalence” or “predominance” are to be the criteria upon which the use of Elaprase is to be measured then it must be so measured within the context of the very low patient numbers;
Palliative treatment is treatment to alleviate the symptoms of a disease. It must be distinguished from curative treatment which cures a disease. It was not in issue that Elaprase is not curative of MPS II but is in fact a palliative treatment; and
MPS II is a Prescribed Minimum Benefit condition and, prima facie, there is no significant difference between private and public sector healthcare practice with regard to prescribing of Elaprase.
In the circumstances it was ordered that:
Hunters Syndrome MPS II is declared a Prescribed Minimum Benefit Condition; and
Pending the decision in respect of Z’s mother’s complaint to CMS, the Scheme is ordered to authorize the treatment and care costs of all medical interventions required by Z for Hunters Syndrome MPII, which treatment includes Elaprase.