“As no modern medications have been commercially available in South Africa until now, HAE patients have been unable to access them. The HAE International Global Access Program offers a regulatory compliant process that allows healthcare professionals to offer treatment for their HAE patients,” says Henrik Balle Boysen, Executive Vice President & Chief Operating Officer of HAE International:
“We are delighted to have initiated our Global Access Program in South Africa where patients will now have the option to access an effective therapy to treat painful, debilitating, and potentially life-threatening HAE swellings.”
Professor Jonny Peter from Groote Schuur Hospital and the University of Cape Town Lung Institute Allergy and Immunology Unit, Cape Town requested the first shipment of medication to South Africa.
“It is wonderful to finally be able to access a rapid, targeted treatment for our HAE patients. The HAE International Global Access Program provides an access route to much-needed targeted treatments at reasonable costing that is fundamental to HAE patients having the freedom to live their own lives and to be in control of HAE”, says Dr Peter:
”The first patient to benefit is severely affected with one to two acute episodes per month without prophylaxis. He has used long-term androgen therapy despite side effects. He has had two episodes of anaphylactoid reactions to fresh frozen plasma, but this has continued to be required for life-threatening acute episodes prior to Ruconest access through the Global Access Program. We have successfully treated one acute attack with 2100units of Ruconest without adverse event and good efficacy. This patient is an excellent example of both the limited treatment options for HAE patients in low middle income countries, as well as the benefits of the Global Access Program in South Africa.”
Dr Peter thinks the Global Access Program is “an excellent initiative”:
“Provided the pricing can stay as low as possible, numerous HAE patients from low middle income countries stand to benefit.”
Until the introduction of the HAE International Global Access Program the only available medications in South Africa have been freeze-dried plasma (available at all hospitals) and Danazol (available on prescription) while no other medication is registered or available in any South African hospitals.
Adrienne de Jongh, President of HAE South Africa, explains:
“After many months of planning the initial rollout of this program is underway. A list of patients has been compiled, applications on a patient named basis processed, and all applicants tested for rabbit allergy. The first orders have been delivered, and some patients are already using the product. Initially, there was a heavy administrative load as all patients had to be put on the system at once, but we anticipate that this process will be fine-tuned over time for repeat orders.”
The Netherlands based company Pharming NV is HAE International’s first Global Access Program pharmaceutical partner. Mischa Boeijen, Senior Product Manager Ruconest of Pharming, says:
“Pharming is extremely privileged to be part of the Global Access Program, a successful collaboration project initiated with HAE International. We are delighted to be able to provide Ruconest, a potentially life-saving therapy to those patients in South Africa who would otherwise not be able to access it. Pharming looks forward to extending our reach to patients across the globe in the future.”
The third partner behind the Global Access Program is the specialist service provider Inceptua Medicines Access. Mark Corbett, Executive Vice-President says:
“Helping to ensure access to treatments for patients in need – where suitable products are not commercially available – is at the very core of what we do. At Inceptua, we are pleased to be supporting HAE International on their critical mission to facilitate access to HAE therapies through the Global Access Program”.
According to Adrienne de Jongh research at the Lung Clinic where the HAE unit is based has concluded that one dose of Ruconest more than paid for itself as it reduced the need for many hours of hospital time. For this reason, Ruconest has been approved for use on the patients in the public sector as well as the private sector, which she calls a huge step forward:
“There is at present no modern HAE medication registered in South Africa and these patients would have had to rely on fresh frozen plasma. However delays in time, matching, ordering and getting supplies delivered often resulted in unnecessary delays, which allowed the HAE attacks time to intensify and consequently took longer to resolve.”
The HAE South Africa President says that there still are a number of issues to work through:
“But we are confident that this program is going to make all the difference to the quality of life of our patients. To live a life without disability is something most people take for granted, but HAE patients will most certainly value these new benefits.”
HAE International cannot handle direct patient inquiries. Henrik Balle Boysen explains that if you are an HAE patient and would like to learn more about access to modern HAE medication through the Global Access Program, you should discuss this with your treating physician who should then get in touch with HAE International.