Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina

Autores
Malbran, Eloisa; Menendez, Alejandra; Malbrán, Alejandro
Año de publicación
2017
Idioma
inglés
Tipo de recurso
artículo
Estado
versión publicada
Descripción
The benefits of worldwide approval of the new drugs for the treatment of acute C1INH-HAE attacks may still not reach all patients. Identifying the current barriers in access to medication, as well as conducting a detailed measurement of the progress in this area, is essential to achieve universal treatment. Two hundred and twenty five patients registered in the Argentina HAE Patient Association (AHAEPA) were randomly selected and invited to participate in a web based poll asking about accessibility to icatibant & pdC1-INH, self-treatment, delay to treatment and coverage. The data retrieved was compared to our previous reports in 2008 and 2013. We collected 156/225 answers. One hundred and eighteen (76%) patients have either pdC1-INH (n=86), icatibant (n=10) or both (n=22), while 38 (24%) do not have access to treatment. In 2008, 26% had access while 82% had it in 2013. Thirty-two subjects (22%) self-injected, similar to 28.6% in 2013, though between studies, widespread self-injection clinics have taken place. However, considering injections by proxy, home treatment reached 56%. Only half of the patients decide to receive treatment early during the attack. Ninety-nine patients (63%) have full coverage, thirty (19%) have no coverage at all and the rest only partial reimbursement. Twenty-nine of the families (31%) share one treatment dose of the medication, better than 36% in 2013. Argentina?s C1INH-HAE patients had a sustained improvement in their access to medication. Efforts should continue to further improve accessibility and optimal management of HAE acute attacks to all patients in the country.
Tratamiento del ataque agudo de angioedema hereditario por deficiencia del inhibidor de C1 en Argentina. La aprobación mundial de los medicamentos para el ataque agudo del angioedema hereditario (HAE) no beneficia a todos los pacientes. Es necesario conocer las barreras de acceso a la medicación para el tratamiento universal. Doscientos veinticinco pacientes, registrados en la Asociación de Pacientes con Angioedema Hereditario (AHAEPA), fueron encuestados por internet acerca de su accesibilidad al icatibant y al concentrado del inhibidor de C1 (pdC1-INH), a la auto inyección de la medicación, al retraso del tratamiento y a la cobertura del medicamento. Comparamos esta información con la obtenida en nuestros estudios de 2008 y 2013. Recolectamos 156/225 respuestas. Ciento dieciocho (76%) pacientes tienen pdC1-INH (n = 86), icatibant (n = 10) o ambos (n = 22), mientras que 38 (24%) no tienen medicación. En 2008, 26% tenían acceso y en 2013, 82%. Treinta y dos (22%) se autoinyectan la medicación, similar al 29% en 2013. Sumando las aplicaciones por profesionales de la salud o familiares en la casa, el tratamiento fuera de las instituciones médicas alcanza el 56%. Solo la mitad decide tratarse tempranamente. Noventa y nueve (63%) tiene cobertura del 100%, 30 (19%) no tiene ningún tipo de cobertura, y el resto la tiene en forma parcial. Veintinueve familias (31%), solo tienen una dosis de tratamiento para todos, mejor que el 36% en 2013. Los pacientes con C1-INH-HAE han tenido una mejoría sustancial en el acceso a la medicación. Igualmente, los esfuerzos deben continuar para mejorar la accesibilidad y tratamiento óptimo de todos.
Fil: Malbran, Eloisa. Unidad de Alergia, Asma E Inmunologia Clinica; Argentina
Fil: Menendez, Alejandra. Asociación Argentina de Pacientes con Angioedema Hereditario; Argentina
Fil: Malbrán, Alejandro. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Unidad de Alergia, Asma E Inmunologia Clinica; Argentina. Hospital Británico de Buenos Aires; Argentina
Materia
ANGIOEDEMA
ARGENTINA
HEREDITARIO
C1 INHIBIDOR
Nivel de accesibilidad
acceso abierto
Condiciones de uso
https://creativecommons.org/licenses/by-nc-sa/2.5/ar/
Repositorio
CONICET Digital (CONICET)
Institución
Consejo Nacional de Investigaciones Científicas y Técnicas
OAI Identificador
oai:ri.conicet.gov.ar:11336/51220

id CONICETDig_56e4c38769b7b0030b56aba12689a48d
oai_identifier_str oai:ri.conicet.gov.ar:11336/51220
network_acronym_str CONICETDig
repository_id_str 3498
network_name_str CONICET Digital (CONICET)
spelling Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentinaTratamiento del ataque agudo de angioedema hereditario por deficiencia del inhibidor de C1 en ArgentinaMalbran, EloisaMenendez, AlejandraMalbrán, AlejandroANGIOEDEMAARGENTINAHEREDITARIOC1 INHIBIDORhttps://purl.org/becyt/ford/3.2https://purl.org/becyt/ford/3The benefits of worldwide approval of the new drugs for the treatment of acute C1INH-HAE attacks may still not reach all patients. Identifying the current barriers in access to medication, as well as conducting a detailed measurement of the progress in this area, is essential to achieve universal treatment. Two hundred and twenty five patients registered in the Argentina HAE Patient Association (AHAEPA) were randomly selected and invited to participate in a web based poll asking about accessibility to icatibant & pdC1-INH, self-treatment, delay to treatment and coverage. The data retrieved was compared to our previous reports in 2008 and 2013. We collected 156/225 answers. One hundred and eighteen (76%) patients have either pdC1-INH (n=86), icatibant (n=10) or both (n=22), while 38 (24%) do not have access to treatment. In 2008, 26% had access while 82% had it in 2013. Thirty-two subjects (22%) self-injected, similar to 28.6% in 2013, though between studies, widespread self-injection clinics have taken place. However, considering injections by proxy, home treatment reached 56%. Only half of the patients decide to receive treatment early during the attack. Ninety-nine patients (63%) have full coverage, thirty (19%) have no coverage at all and the rest only partial reimbursement. Twenty-nine of the families (31%) share one treatment dose of the medication, better than 36% in 2013. Argentina?s C1INH-HAE patients had a sustained improvement in their access to medication. Efforts should continue to further improve accessibility and optimal management of HAE acute attacks to all patients in the country.Tratamiento del ataque agudo de angioedema hereditario por deficiencia del inhibidor de C1 en Argentina. La aprobación mundial de los medicamentos para el ataque agudo del angioedema hereditario (HAE) no beneficia a todos los pacientes. Es necesario conocer las barreras de acceso a la medicación para el tratamiento universal. Doscientos veinticinco pacientes, registrados en la Asociación de Pacientes con Angioedema Hereditario (AHAEPA), fueron encuestados por internet acerca de su accesibilidad al icatibant y al concentrado del inhibidor de C1 (pdC1-INH), a la auto inyección de la medicación, al retraso del tratamiento y a la cobertura del medicamento. Comparamos esta información con la obtenida en nuestros estudios de 2008 y 2013. Recolectamos 156/225 respuestas. Ciento dieciocho (76%) pacientes tienen pdC1-INH (n = 86), icatibant (n = 10) o ambos (n = 22), mientras que 38 (24%) no tienen medicación. En 2008, 26% tenían acceso y en 2013, 82%. Treinta y dos (22%) se autoinyectan la medicación, similar al 29% en 2013. Sumando las aplicaciones por profesionales de la salud o familiares en la casa, el tratamiento fuera de las instituciones médicas alcanza el 56%. Solo la mitad decide tratarse tempranamente. Noventa y nueve (63%) tiene cobertura del 100%, 30 (19%) no tiene ningún tipo de cobertura, y el resto la tiene en forma parcial. Veintinueve familias (31%), solo tienen una dosis de tratamiento para todos, mejor que el 36% en 2013. Los pacientes con C1-INH-HAE han tenido una mejoría sustancial en el acceso a la medicación. Igualmente, los esfuerzos deben continuar para mejorar la accesibilidad y tratamiento óptimo de todos.Fil: Malbran, Eloisa. Unidad de Alergia, Asma E Inmunologia Clinica; ArgentinaFil: Menendez, Alejandra. Asociación Argentina de Pacientes con Angioedema Hereditario; ArgentinaFil: Malbrán, Alejandro. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Unidad de Alergia, Asma E Inmunologia Clinica; Argentina. Hospital Británico de Buenos Aires; ArgentinaMedicina (Buenos Aires)2017-08info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionhttp://purl.org/coar/resource_type/c_6501info:ar-repo/semantics/articuloapplication/pdfapplication/pdfhttp://hdl.handle.net/11336/51220Malbran, Eloisa; Menendez, Alejandra; Malbrán, Alejandro; Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina; Medicina (Buenos Aires); Medicina (Buenos Aires); 77; 4; 8-2017; 279-2820025-76801669-9106CONICET DigitalCONICETenginfo:eu-repo/semantics/altIdentifier/url/http://www.medicinabuenosaires.com/volumen-77-ano-2017/volumen-77-ano-2017-no-4-indice/treatment-of-hereditary-angioedema-due-to-c1-inhibitor-deficiency-in-argentina/info:eu-repo/semantics/openAccesshttps://creativecommons.org/licenses/by-nc-sa/2.5/ar/reponame:CONICET Digital (CONICET)instname:Consejo Nacional de Investigaciones Científicas y Técnicas2025-10-15T15:07:49Zoai:ri.conicet.gov.ar:11336/51220instacron:CONICETInstitucionalhttp://ri.conicet.gov.ar/Organismo científico-tecnológicoNo correspondehttp://ri.conicet.gov.ar/oai/requestdasensio@conicet.gov.ar; lcarlino@conicet.gov.arArgentinaNo correspondeNo correspondeNo correspondeopendoar:34982025-10-15 15:07:49.82CONICET Digital (CONICET) - Consejo Nacional de Investigaciones Científicas y Técnicasfalse
dc.title.none.fl_str_mv Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina
Tratamiento del ataque agudo de angioedema hereditario por deficiencia del inhibidor de C1 en Argentina
title Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina
spellingShingle Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina
Malbran, Eloisa
ANGIOEDEMA
ARGENTINA
HEREDITARIO
C1 INHIBIDOR
title_short Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina
title_full Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina
title_fullStr Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina
title_full_unstemmed Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina
title_sort Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina
dc.creator.none.fl_str_mv Malbran, Eloisa
Menendez, Alejandra
Malbrán, Alejandro
author Malbran, Eloisa
author_facet Malbran, Eloisa
Menendez, Alejandra
Malbrán, Alejandro
author_role author
author2 Menendez, Alejandra
Malbrán, Alejandro
author2_role author
author
dc.subject.none.fl_str_mv ANGIOEDEMA
ARGENTINA
HEREDITARIO
C1 INHIBIDOR
topic ANGIOEDEMA
ARGENTINA
HEREDITARIO
C1 INHIBIDOR
purl_subject.fl_str_mv https://purl.org/becyt/ford/3.2
https://purl.org/becyt/ford/3
dc.description.none.fl_txt_mv The benefits of worldwide approval of the new drugs for the treatment of acute C1INH-HAE attacks may still not reach all patients. Identifying the current barriers in access to medication, as well as conducting a detailed measurement of the progress in this area, is essential to achieve universal treatment. Two hundred and twenty five patients registered in the Argentina HAE Patient Association (AHAEPA) were randomly selected and invited to participate in a web based poll asking about accessibility to icatibant & pdC1-INH, self-treatment, delay to treatment and coverage. The data retrieved was compared to our previous reports in 2008 and 2013. We collected 156/225 answers. One hundred and eighteen (76%) patients have either pdC1-INH (n=86), icatibant (n=10) or both (n=22), while 38 (24%) do not have access to treatment. In 2008, 26% had access while 82% had it in 2013. Thirty-two subjects (22%) self-injected, similar to 28.6% in 2013, though between studies, widespread self-injection clinics have taken place. However, considering injections by proxy, home treatment reached 56%. Only half of the patients decide to receive treatment early during the attack. Ninety-nine patients (63%) have full coverage, thirty (19%) have no coverage at all and the rest only partial reimbursement. Twenty-nine of the families (31%) share one treatment dose of the medication, better than 36% in 2013. Argentina?s C1INH-HAE patients had a sustained improvement in their access to medication. Efforts should continue to further improve accessibility and optimal management of HAE acute attacks to all patients in the country.
Tratamiento del ataque agudo de angioedema hereditario por deficiencia del inhibidor de C1 en Argentina. La aprobación mundial de los medicamentos para el ataque agudo del angioedema hereditario (HAE) no beneficia a todos los pacientes. Es necesario conocer las barreras de acceso a la medicación para el tratamiento universal. Doscientos veinticinco pacientes, registrados en la Asociación de Pacientes con Angioedema Hereditario (AHAEPA), fueron encuestados por internet acerca de su accesibilidad al icatibant y al concentrado del inhibidor de C1 (pdC1-INH), a la auto inyección de la medicación, al retraso del tratamiento y a la cobertura del medicamento. Comparamos esta información con la obtenida en nuestros estudios de 2008 y 2013. Recolectamos 156/225 respuestas. Ciento dieciocho (76%) pacientes tienen pdC1-INH (n = 86), icatibant (n = 10) o ambos (n = 22), mientras que 38 (24%) no tienen medicación. En 2008, 26% tenían acceso y en 2013, 82%. Treinta y dos (22%) se autoinyectan la medicación, similar al 29% en 2013. Sumando las aplicaciones por profesionales de la salud o familiares en la casa, el tratamiento fuera de las instituciones médicas alcanza el 56%. Solo la mitad decide tratarse tempranamente. Noventa y nueve (63%) tiene cobertura del 100%, 30 (19%) no tiene ningún tipo de cobertura, y el resto la tiene en forma parcial. Veintinueve familias (31%), solo tienen una dosis de tratamiento para todos, mejor que el 36% en 2013. Los pacientes con C1-INH-HAE han tenido una mejoría sustancial en el acceso a la medicación. Igualmente, los esfuerzos deben continuar para mejorar la accesibilidad y tratamiento óptimo de todos.
Fil: Malbran, Eloisa. Unidad de Alergia, Asma E Inmunologia Clinica; Argentina
Fil: Menendez, Alejandra. Asociación Argentina de Pacientes con Angioedema Hereditario; Argentina
Fil: Malbrán, Alejandro. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Unidad de Alergia, Asma E Inmunologia Clinica; Argentina. Hospital Británico de Buenos Aires; Argentina
description The benefits of worldwide approval of the new drugs for the treatment of acute C1INH-HAE attacks may still not reach all patients. Identifying the current barriers in access to medication, as well as conducting a detailed measurement of the progress in this area, is essential to achieve universal treatment. Two hundred and twenty five patients registered in the Argentina HAE Patient Association (AHAEPA) were randomly selected and invited to participate in a web based poll asking about accessibility to icatibant & pdC1-INH, self-treatment, delay to treatment and coverage. The data retrieved was compared to our previous reports in 2008 and 2013. We collected 156/225 answers. One hundred and eighteen (76%) patients have either pdC1-INH (n=86), icatibant (n=10) or both (n=22), while 38 (24%) do not have access to treatment. In 2008, 26% had access while 82% had it in 2013. Thirty-two subjects (22%) self-injected, similar to 28.6% in 2013, though between studies, widespread self-injection clinics have taken place. However, considering injections by proxy, home treatment reached 56%. Only half of the patients decide to receive treatment early during the attack. Ninety-nine patients (63%) have full coverage, thirty (19%) have no coverage at all and the rest only partial reimbursement. Twenty-nine of the families (31%) share one treatment dose of the medication, better than 36% in 2013. Argentina?s C1INH-HAE patients had a sustained improvement in their access to medication. Efforts should continue to further improve accessibility and optimal management of HAE acute attacks to all patients in the country.
publishDate 2017
dc.date.none.fl_str_mv 2017-08
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
http://purl.org/coar/resource_type/c_6501
info:ar-repo/semantics/articulo
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv http://hdl.handle.net/11336/51220
Malbran, Eloisa; Menendez, Alejandra; Malbrán, Alejandro; Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina; Medicina (Buenos Aires); Medicina (Buenos Aires); 77; 4; 8-2017; 279-282
0025-7680
1669-9106
CONICET Digital
CONICET
url http://hdl.handle.net/11336/51220
identifier_str_mv Malbran, Eloisa; Menendez, Alejandra; Malbrán, Alejandro; Treatment of hereditary angioedema due to c1 inhibitor deficiency in argentina; Medicina (Buenos Aires); Medicina (Buenos Aires); 77; 4; 8-2017; 279-282
0025-7680
1669-9106
CONICET Digital
CONICET
dc.language.none.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv info:eu-repo/semantics/altIdentifier/url/http://www.medicinabuenosaires.com/volumen-77-ano-2017/volumen-77-ano-2017-no-4-indice/treatment-of-hereditary-angioedema-due-to-c1-inhibitor-deficiency-in-argentina/
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
https://creativecommons.org/licenses/by-nc-sa/2.5/ar/
eu_rights_str_mv openAccess
rights_invalid_str_mv https://creativecommons.org/licenses/by-nc-sa/2.5/ar/
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv Medicina (Buenos Aires)
publisher.none.fl_str_mv Medicina (Buenos Aires)
dc.source.none.fl_str_mv reponame:CONICET Digital (CONICET)
instname:Consejo Nacional de Investigaciones Científicas y Técnicas
reponame_str CONICET Digital (CONICET)
collection CONICET Digital (CONICET)
instname_str Consejo Nacional de Investigaciones Científicas y Técnicas
repository.name.fl_str_mv CONICET Digital (CONICET) - Consejo Nacional de Investigaciones Científicas y Técnicas
repository.mail.fl_str_mv dasensio@conicet.gov.ar; lcarlino@conicet.gov.ar
_version_ 1846083223626448896
score 13.22299