Emergency / crisis support: /emergency
If factor concentrates are not being supplied, emicizumab has been declined, a bleed is occurring without product access, or perioperative cover is being disputed before surgery — these are the immediate steps.
Acute Bleed Without Factor Access: Emergency
If someone with severe haemophilia is having a joint bleed, muscle bleed, or suspected intracranial haemorrhage and factor concentrate is not immediately available:
- Call an ambulance immediately for serious bleeds — suspected intracranial haemorrhage, throat or neck bleed, major muscle bleed, or any bleed causing altered consciousness.
- Contact your Haemophilia Treatment Centre (HTC) directly. HTCs maintain emergency factor supplies and have haematologists on call.
- Call your medical aid's emergency hospitalisation line and state: "I have CDL-registered haemophilia. I need emergency factor concentrate under my PMB/CDL benefit."
- Suspected intracranial haemorrhage in haemophilia is a PMB emergency. The scheme cannot refuse emergency treatment.
Most Common Haemophilia Financial Crises
- Factor concentrate not available through the designated pharmacy or supplier
- Annual monetary cap being applied to factor concentrate claims
- Scheme downgrading from prophylaxis to on-demand therapy at renewal
- Emicizumab exceptional-needs declined
- Perioperative factor cover disputed before or after surgery
- Inhibitor development creating an unanticipated cost escalation
If Factor Concentrate Is Being Capped or Not Supplied
If the scheme is applying an annual rand cap to factor concentrate, write to the scheme's chronic benefits department:
"Factor VIII/IX replacement therapy for [patient name] is the CDL-minimum treatment standard for Haemophilia A/B (ICD-10: D66/D67), for which this patient is registered. The CDL benefit is not subject to an annual monetary cap — it is a defined benefit covering the minimum treatment standard on an ongoing basis under Regulation 8 of the Medical Schemes Act. Please confirm that no annual rand cap will be applied to CDL-registered factor replacement therapy for this patient."
Attach your CDL registration confirmation and haematologist's treatment protocol letter. If the scheme maintains a cap, this is a direct violation of CDL obligations. Escalate to the CMS.
If Prophylaxis Is Being Downgraded to On-Demand
If the scheme is offering on-demand therapy but your haematologist recommends prophylaxis for severe disease, the scheme's position is clinically untenable. Prophylaxis is the standard of care for severe haemophilia per the World Federation of Hemophilia and the South African Haemophilia Foundation. On-demand therapy for severe haemophilia leads to joint damage, disability, and ultimately orthopaedic surgery — which costs far more than prophylaxis.
Ask your haematologist to submit a written clinical motivation: severity classification, factor activity level, annual bleed rate history, and explicit guideline citations. Submit through the scheme's formal appeals process. If the internal appeal fails, escalate to the CMS. Document everything in writing.
If Emicizumab Was Declined
For patients with inhibitors: Emicizumab is the preferred treatment per WFH 2020 guidelines. A decline here has a very strong clinical appeal basis. Request a peer-to-peer review between your haematologist and the scheme's medical advisor — this resolves a significant proportion of inhibitor-patient emicizumab declines before formal appeal.
For severe Haemophilia A without inhibitors: The clinical case emphasises quality of life (subcutaneous vs IV), bleed rate reduction, and adherence data. Submit annual bleed rate on current therapy, current factor consumption costs, and evidence of suboptimal adherence with IV factor due to venous access or lifestyle factors. An economic argument (emicizumab at R720,000/year vs current factor + infusion costs + hospital visits) can be included in the motivation.
Perioperative Factor Cover Disputes
Perioperative factor replacement is a component of CDL treatment for haemophilia patients undergoing surgery — it is not a separate discretionary benefit. To prevent disputes:
- Pre-authorise the surgical procedure and the perioperative factor protocol separately and in advance
- Get the scheme to confirm in writing: the quantity of factor approved, the duration (days), and under which benefit it is funded
- If the scheme argues the perioperative factor falls under the in-hospital benefit limit, dispute this: the perioperative factor requirement arises directly from the CDL condition and should be funded under CDL without an in-hospital monetary cap applying
Triage Table
| Situation | Priority | Action |
|---|---|---|
| Acute bleed, no factor access | Emergency | HTC contact; ambulance for serious bleeds; PMB emergency auth |
| Intracranial haemorrhage suspected | Emergency | Ambulance; PMB emergency; do not wait |
| Factor cap applied | Urgent | Written CDL dispute; no cap on CDL minimum treatment |
| Prophylaxis downgraded | High | Haematologist motivation + appeal + CMS |
| Emicizumab declined (inhibitor patient) | High | WFH guideline appeal + peer-to-peer |
| Emicizumab declined (no inhibitor) | Medium | Detailed exceptional-needs re-motivation |
| Perioperative factor disputed | Medium | Pre-auth in writing; CDL perioperative cover argument |
| Inhibitor development | Urgent | Immediate haematologist notification; begin emicizumab application |
Escalation Contacts
South African Haemophilia Foundation (SAHF): www.sahf.org.za — patient rights support and HTC network Council for Medical Schemes (CMS): 0861 123 267 | www.medicalschemes.org.za AURA Emergency: /emergency
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This page is general information about medical schemes. It is not medical advice: speak to a healthcare professional about your own treatment. Medical aid and gap cover advice is given by Eldon de Waal, a Supervised Representative of Approach Administration (FSP 23579).