Greece Greek Assosiation of HAE Stavroula Labiri HAE Representative for Greece
Who we are? Greek Association of HAE Stavroula Labiri, HAE Representative for Greece We are members of the HAEi and the Greek Alliance for Rare • Diseases. Our Facebook Group has 38 members representing 54 people. • Cyprus is also a member of our team with currently 2 members (1 • patient & 1 doctor). Cont ntact act Detai ails ls: Telephone: + 30 6977 412779 E-mail: haegroup.greece@gmail.com Facebook group: http://www.facebook.com/groups/HAE.GREECE
Let’s talk in numbers !!! • 10 10,815 815,19 197 7 is the total al popul ulatio ation n in Gr Greece ce • 120 120 HAE AE p patie ients nts - 43 non related ted famili ilies es • 300 patie ients nts estim timate ated d based ed on globa bal l preva vale lenc nce e (1/90,0 0,000 00) = 63 = 57 Age range 4 – 88 Years Greece
...Let’s talk in numbers !!! • 80% of the patients in Greece have Type I HAE • 19% of patients in Greece have Type II HAE – 1 patient with acquired angioedema • The average age of disease onset is 12 years • In 40% of the patients, the diagnosis of HAE was established only during the last t 5 years rs • Overall diagnosis of 16.5 years • 7 confirmed deaths from Laryngeal edema Greece
...Let’s talk more in numbers !!! Triggers of HAE Affected Sites attacks in Greece Greece Bibliography % of patients per trigger 60 % ~50% Larynx Surgery 19,20% Dental procedures 28,00% 88 % 70-90% Abdomen ACE inh 33,70% viral infection 42,30% 98,5 % ~95% Skin trauma 74% emotional stress 78,60% • 22% unnecessary surgeries for without obvious reason 94,20% acute abdomen vs 30% in literature • Intubation or cricothyreotomy ( 14%) Greece
Let’s talk geography !!! Greece Geographic District Patients % Attika 25 21% Lesvos island has 25 patients Macedonia 15 13% Total polulation 86,000 Peloponnese 15 13% Islands in Aegean 25 21% Sea Epirus 11 10% Rest of Central 9 8% Greece Crete 8 5% Thessaly 6 5% Thrace 5 4% Islands in Ionian Sea 1 1% Greece
Let’s talk geography !!! Cyprus Population 838,897 # of patients 2 # of HAE Physicians 2 Greece
Management of HAE: Diagnosis and doctors The doctors that usually treat HAE in Greece are Allergists, Immunologists or ENTs. In 2009 the Hellenic Society of Allergiology and Clinical Immunology created GHAER (Greek Hereditary Angioedema Registry), in order to locate and register all HAE Cases in Greece. An Awareness campaign started in 2010 in order for all allergists and all allergy hospital departments in the country to be informed regarding HAE and gradually was extended addressing specialists in all fields involved in the diagnosis and treatment of the disease (e.g. pediatricians and ENT specialists). of general physicians about HAE in Greece is still very poor. There is NO NO specialist center for HAE in Greece. Greece
Management of HAE: Diagnosis and doctors Personal & Family Medical History Phobia concerning the availability of appropriate drugs at the next episode C4 blood test Phobia concerning insurance coverage C1 inh blood test Refusal of emergency room physicians to administer(particularly i.v.) the drugs that the patients had brought with them during the Genetic Defect Testing episodes (due to unfamiliarity with the disease or the drugs) • Unfortunately Rare diseases and HAE are not a priority in Greece. Diseases such as cancer, HIV, HCV, diseases affecting the heart and diabetes are more important • HAE is underdiagnosed in Greece with obvious implications for the treatment , the mortality and the deterioration of quality of life of the patients Greece
Management of HAE: Diagnosis and doctors Prodromal symptoms Most common Most common Symptoms: Triggers: • Erythema • Hormones marginatum 49% 51% • Viral Infections • Fatigue • Nausea With prodromal Without prodromal Greece Symptoms Literature 34 pregnancies Improvement 85% 56% Unchanged 5% 8% Worsening 10% 36%
Management of HAE: Medication and treating attacks Long Term Treatment Danatrol caps. Not reimbursed No restrictions on prescriptions 100,200mg Transamin caps. Not reimbursed No restrictions on prescriptions 250mg Treating Attacks Berinert-P inj. Reimbursed There is a limit of 10 vials per month that 500IU/vial the doctor can Only administered in prescribe hospitals Reimbursed There is a limit of 10 Firazyr inj. Sol vials per month that 30mg the doctor can Self administered prescribe
Management of HAE: Medication and treating attacks In case e of Em Emergenc ncy y : – HAE is NOT NOT recognized by doctors in the Emergency Rooms – Medication is NOT OT available, patients must bring their own medication – Medical personnel is NOT NOT trained to administer Berinert (patients or care givers must give instructions)
Future of HAE in Greece: Actions - Plans • Raise HAE awareness in Greece & Cyprus – Create a national website, hosted by HAEi – Recruit more members in our Facebook group – Collaborate with local HAE specialists to raise awareness among their co-workers (ER specialists, ENTs, Allergists etc) – Host a Patient meeting – Participate in global meetings to be kept up to speed of all HAE innovations and news • Inform & Encourage people to get tested. • Appoint one of the main Hospitals in Athens as a HAE center • Train patients to self-administer their medication
Special Acknowledgment: Dr Fotis Psarros Allergist in Athens Naval Hospital
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