From Chairman Danail Dimov, HAE Bulgaria
The next important goal HAE Bulgaria wants to achieve is to improve the access of HAE patients to plasma protein therapies and in particular to HAE prophylaxis. Our goal is to collaborate more closely with patients’ community, Bulgarian authorities and health care professionals in order to improve the access to treatment with C1 Esterase Inhibitor (Human) and especially in terms of prophylaxis with the subcutaneous form. We deeply believe that this therapy new to Bulgaria will significantly improve patient compliance and will lead to positive lifestyle changes. We started this campaign at the end of 2019 and almost managed to persuade the Ministry of Health to propose the requested changes to Parliament, but unfortunately the COVID-19 crisis shifted the agenda and delayed things. Now we are starting the campaign again and we also submitted our application for Behring Local Empowerment for Advocacy Development (LEAD) Grant to support this campaign.
Main objectives: Access to prophylaxis – Changes in the legislation ensuring the access of the patients with HAE to prophylaxis for improving the quality of life by providing prophylactic treatment. Current legislation covers only on-demand treatment.
The pandemic has significantly changed the living and treatment conditions for HAE patients in Bulgaria. The ongoing pandemic has as a direct and immediate result the difficulty and restriction of access of patients with HAE to timely diagnosis and treatment of their disease, which in turn leads to a direct and immediate danger to the lives of the patients. This is especially true for those who have very frequent and acute attacks and for whom the need for prophylactic treatment is on the agenda in order to preserve their life and health and significantly improve their quality of life. Insofar as the Bulgarian legislation does not provide for the possibility of prophylactic treatment of patients with HAE, we consider it our duty and priority to ensure that patients have access to such treatment. The difficult access of HAE patients to specialized medical care in the conditions of the COVID-19 pandemic makes prevention even more important for them.
Expected direct results: Significant improvement of the quality of life of patients with HAE, protection of their life and health in extremely difficult pandemic conditions and difficult access to specialized medical care in hospitals.
Indirect results: Improvement of the awareness among the Bulgarian legislators, the executive power and the society in general about HAE and the problems of HAE patients; providing faster and better access to timely diagnosis and treatment of patients with HAE; raising awareness among patients about the disease as well as their ability to apply the prescribed therapies at home as the fastest way to obtain the necessary treatment and to overcome and prevent attacks of the disease; acquiring the necessary publicity of the need for treatment and prevention for these patients in order to thwart future legislative attempts to limit or prevent patients’ access to timely and adequate treatment of their disease.
We have a good history in our attempts to change the legislation for the benefit of the patients. We have done it twice over the last three years and this gives us the confidence that we will succeed again.
