Ook uit de nieuwsbrief van de HAE-Organization een beschrijving van de hordes die de HAE-patiënt in Brazilië moet nemen om aan de nieuwste, goede medicatie te komen. Zelfs een proces tegen de staat hoort daar bij. Wat mogen we blij zijn in Nederland te leven als je dit leest.
"Brazilian patients have had access to Firazyr since 2011 and Berinert since August 2014 – and both of them will be available for self administration later on in 2015.
While the price of tranexamic acid is 8 USD for a pack of 12 (250 mg), Danazol costs 58 USD for a pack of 50 (100 mg). With tranexamic acid the patient pays for the medicine or gets it for free in (a few) public hospitals. As for Danazol it is registered for HAE treatment and is distributed for free in hospitals provided the patient has a prescription. Oxandrolone is formulated and a few drugstores make it.
Both Firazyr and Berinert are allowed in Brazil as these medicines are registered with Anvisa, the Brazilian Health Surveillance Agency. However, they don’t have clinical protocol for HAE in Brazil yet - and that leads to a pretty special situation: To get the medication the patient must ask his or her doctor to make an individual medical report about the patient and HAE requesting
for Firazyr or Berinert. The patient then has to send the medical report and personal documents to a lawyer and provided that the patient pays for the legal assistance the lawyer will make a lawsuit against the state. Only after this bureaucratic and laborious process the patient will receive the medicine.
To make things just a little easier for the HAE patients in Brazil, ABRANGHE has joined forces with an advocacy organization that makes this process free for the patients registered with the Brazilian HAE organization.
Usually there will be some insurance coverage when a patient has an acute attack in a hospital. However, it can be hard to get the proper medicine at that moment. Presently there is only clinical protocol for Danazol, so most acute attacks are treated with painkillers or fresh plasma. For prophylactic treatment the doctors use Danazol, tranexamic acid or Oxondrolone. Some physicians are trying to change to Firazyr and Berinert but they only prescribe these kinds of medicine if the patient is able to pay on his or her own or by filing a lawsuit.
Up until now the patients filing lawsuits against the state have won these lawsuits. Once won, the patient receives a certain amount of medicine, depending on the doctor’s prescription and the specific needs of the patient. Whenever the medicine is used the patient will have to turn to the lawyer again.
Particularly the first time it is hard because the patients need to attach a lot of documents and a lengthy medical report. In order to help the members ABRANGHE has developed a model that makes the process easier for patients as well as doctors who haven’t dealt with HAE before.
Presently some Brazilian physicians are trying to get Firazyr and Berinert added to the Anvisa’s drug list. When that happens there will no longer be any need for individual lawsuits.