| Lived experience submissions on new treatments and medicines, part of national working group looking at HTA reform, part of industry campaign to improve timeliness of HTA approval [Australia]. | Respiratorio
> Enfermedades pulmonares | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | Over 100,000 | National | Regularly | 119011106646 |
| Work with PBAC [Pharmaceutical Benefits Advisory Committee], HTA [Health Technology Assessment], TGA [Therapeutic Goods Administration], and MSAC [Medical Services Advisory Committee], as well as patient groups and Medicines Australia Australia to advocate for access and equity for treatments and care. | Neuromuscular
> Distrofia muscular | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 1,000 | National | Regularly | 119021570524 |
| We support and advocate for enhancement of the involvement of patients/carers in Health Technology. We have been involved in the Co design group Enhancing Consumer involvement in Australian Health technology assessment and in the HTA Review process. | Cáncer
> Cáncer: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | We do not communicate with patients directly | Regional | Sometimes | 119031444677 |
| Consumer feedback to PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], government consultations, and other organisations on behalf of those with kidney disease. | Riñón
> Enfermedades renales | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | Do not know | National | Regularly | 119051003447 |
| We provide public comment to the Pharmaceutical Benefits Advisory Committee [PBAC] for the reimbursement of medicines relating to asthma, including some vaccines. | Respiratorio
> Asma | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | Over 100,000 | National | Regularly | 119051065145 |
| PBAC [Pharmaceutical Benefits Advisory Committee] comments. | Piel
> Dermatitis atópica/eccema | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | Over 100,000 | National | Regularly | 119051082840 |
| HTA [Health Technology Assessment] — lived experience. | Respiratorio
> Enfermedades pulmonares | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | Over 100,000 | National | Regularly | 119051865995 |
| We provide expertise to regulatory and funding decision-makers on topics like newborn screening, medicine listing, and model of care funding. | Raro
> Trastornos raros: genéticos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 1,000 | National | Sometimes | 119054286714 |
| Involved in government [Australia] policy reviews - HTA review and Chronic Disease - submit responses to TGA [Therapeutic Goods Administration], MSAC [Medical Services Advisory Committee], and PBAC [Pharmaceutical Benefits Advisory Committee] in relation to sponsor requests. | Gastrointestinal
> IBD | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | Over 100,000 | National | Regularly | 119058351283 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Cardiovascular
> Condiciones cardiovasculares y del corazón | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | Do not know | International | Regularly | 119061299937 |
| Our organisation exists to represent the interests of both community-led mental health service organisations and also the lived experience consumer community. A recent example of our work representing patient interests to regulators that are responsible for deciding drug pricing was recent correspondence we issued to the Australian Pharmaceutical Benefits Advisory Committee, requesting that a drug for the treatment of schizophrenia be listed on the Pharmaceutical Benefits Scheme. In this correspondence, we directly represented the views of patients and family and carers. | Salud mental
> Salud mental: la mayoría de las condiciones | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 10,000 | National | Sometimes | 119074282308 |
| We provide public comment to the Pharmaceutical Benefits Advisory Committee for the reimbursement of medicines relating to asthma, including some vaccines. We write and support submissions to the Therapeutic Goods Administration for changes to medicines. Asthma Australia will lobby government if a change that is made is not in the best interest of people with asthma. | Respiratorio
> Asma | Asociación regulatoria
> Contribuir a las presentaciones de Autorización de Comercialización | Over 100,000 | National | Regularly | 119051065145 |
| Work with PBAC [Pharmaceutical Benefits Advisory Committee], HTA [Health Technology Assessment], TGA [Therapeutic Goods Administration], and MSAC [Medical Services Advisory Committee], as well as patient groups and Medicines Australia Australia to advocate for access and equity for treatments and care. | Neuromuscular
> Distrofia muscular | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 1,000 | National | Regularly | 119021570524 |
| Our organisation exists to represent the interests of both community-led mental health service organisations and also the lived experience consumer community. | Salud mental
> Salud mental: la mayoría de las condiciones | Asociación regulatoria
> Con otros defensores de la salud | 10,000 | National | Sometimes | 119074282308 |
| Regular advocacy and lobbying to all levels of government on new and current diabetes medications and technology. | Endocrino
> Diabetes (tipos 1 y 2) | Impactando políticas y legislación
> Influir en la política y legislación de salud | Over 100,000 | National | Regularly | 119023443093 |
| We provide public comment to the Pharmaceutical Benefits Advisory Committee for the reimbursement of medicines relating to asthma, including some vaccines. We write and support submissions to the Therapeutic Goods Administration for changes to medicines. Asthma Australia will lobby government if a change that is made is not in the best interest of people with asthma. | Respiratorio
> Asma | Impactando políticas y legislación
> Influir en la política y legislación de salud | Over 100,000 | National | Regularly | 119051065145 |
| Involved in government [Australia] policy reviews - HTA review and Chronic Disease - submit responses to TGA [Therapeutic Goods Administration], MSAC [Medical Services Advisory Committee], and PBAC [Pharmaceutical Benefits Advisory Committee] in relation to sponsor requests. | Gastrointestinal
> IBD | Impactando políticas y legislación
> Influir en la política y legislación de salud | Over 100,000 | National | Regularly | 119058351283 |
| Where possible, we add our advocacy voice to decision-makers. | Neuromuscular
> Distrofia muscular | Impactando políticas y legislación
> Influir en la política y legislación de salud | 1,000 | National | Rarely | 119070072574 |
| Consumer feedback to PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], government consultations, and other organisations on behalf of those with kidney disease. | Riñón
> Enfermedades renales | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | Do not know | National | Regularly | 119051003447 |
| Public submissions. | Investigación médica
> Investigación médica | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 100 | National | Sometimes | 119075599019 |
| Pre-Budget Submissions, Advocacy activities, Meetings. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Impactando políticas y legislación
> Movilizar parlamentarios y líderes políticos | Over 100,000 | National | Regularly | 119017682842 |
| Weight loss drugs, general medicine costs. | Defensa del paciente
> Derechos del paciente | Defensa de precios y asequibilidad
> Abogar por precios justos de medicamentos | 100,000 | National | Sometimes | 119055318270 |
| Involved in government [Australia] policy reviews - HTA review and Chronic Disease - submit responses to TGA [Therapeutic Goods Administration], MSAC [Medical Services Advisory Committee], and PBAC [Pharmaceutical Benefits Advisory Committee] in relation to sponsor requests. | Gastrointestinal
> IBD | Defensa de precios y asequibilidad
> Abogar por precios justos de medicamentos | Over 100,000 | National | Regularly | 119058351283 |
| Pricing. | Reumático
> Lupus | Defensa de precios y asequibilidad
> Abogar por precios justos de medicamentos | 5,000 | International | Regularly | 119058972997 |
| Through an HTA [Health Technology Assessment] implementation review, direct advocacy around drug access and pricing, part of roundtables to more effectively advocate patient interests for change. | Neurológico
> Neurológico: otro | Defensa de precios y asequibilidad
> Abogar por precios justos de medicamentos | We do not communicate with patients directly | National | Regularly | 119069368666 |
| We will sometimes complete Consumer Comments for the Pharmaceutical Benefits Advisory Committee if we feel that an immunization should be federally funded on the National Immunization Program. | Infeccioso
> Inmunización | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | Over 100,000 | National | Sometimes | 119022383972 |
| Access to Palovarotene [to reduce the formation of abnomal bone tissue in people with It is indicated for patients with the ultra-rare genetic disorder Fibrodysplasia Ossificans Progressiva (FOP)] via the PBS [Pharmaceutical Benefits Scheme] listing. | Hueso
> Fibrodisplasia osificante progresiva (FOP) | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 100 | National | Rarely | 119044789085 |
| Australia's PBS [Pharmaceutical Benefits Scheme] listings as an example. | Riñón
> Enfermedades renales | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 5,000 | National | Regularly | 119050789619 |
| We provide expertise to regulatory and funding decision-makers on topics like newborn screening, medicine listing, and model of care funding. | Raro
> Trastornos raros: genéticos | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 1,000 | National | Sometimes | 119054286714 |
| Our organisation exists to represent the interests of both community-led mental health service organisations and also the lived experience consumer community. A recent example of our work representing patient interests to regulators that are responsible for deciding drug pricing was recent correspondence we issued to the Australian Pharmaceutical Benefits Advisory Committee, requesting that a drug for the treatment of schizophrenia be listed on the Pharmaceutical Benefits Scheme. In this correspondence, we directly represented the views of patients and family and carers. | Salud mental
> Salud mental: la mayoría de las condiciones | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 10,000 | National | Sometimes | 119074282308 |
| Work with PBAC [Pharmaceutical Benefits Advisory Committee], HTA [Health Technology Assessment], TGA [Therapeutic Goods Administration], and MSAC [Medical Services Advisory Committee], as well as patient groups and Medicines Australia Australia to advocate for access and equity for treatments and care. | Neuromuscular
> Distrofia muscular | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 1,000 | National | Regularly | 119021570524 |
| Weight loss drugs, general medicine costs. | Defensa del paciente
> Derechos del paciente | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 100,000 | National | Sometimes | 119055318270 |
| Regulations and restrictions regarding prescribing of antivirals for COVID to our patient cohort [neurological conditions]. | Neurológico
> Neurológico: otro | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 5,000 | National | Rarely | 119056702514 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Cardiovascular
> Condiciones cardiovasculares y del corazón | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | Do not know | International | Regularly | 119061299937 |
| Through an HTA [Health Technology Assessment] implementation review, direct advocacy around drug access and pricing, part of roundtables to more effectively advocate patient interests for change. | Neurológico
> Neurológico: otro | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | We do not communicate with patients directly | National | Regularly | 119069368666 |
| Through an HTA [Health Technology Assessment] implementation review. | Neurológico
> Neurológico: otro | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | We do not communicate with patients directly | National | Regularly | 119069368666 |
| We will sometimes complete Consumer Comments for the Pharmaceutical Benefits Advisory Committee if we feel that an immunization should be federally funded on the National Immunization Program. | Infeccioso
> Inmunización | Mejorando las vías de acceso
> Abogar por un acceso más amplio a las vacunas | Over 100,000 | National | Sometimes | 119022383972 |
| Access to Palovarotene [to reduce the formation of abnomal bone tissue in people with It is indicated for patients with the ultra-rare genetic disorder Fibrodysplasia Ossificans Progressiva (FOP)] via the PBS [Pharmaceutical Benefits Scheme] listing. | Hueso
> Fibrodisplasia osificante progresiva (FOP) | Mejorando las vías de acceso
> Mejorando el acceso a terapias raras/ultra-raras | 100 | National | Rarely | 119044789085 |
| Consumer feedback to PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], government consultations, and other organisations on behalf of those with kidney disease. | Riñón
> Enfermedades renales | Aportaciones del paciente basadas en evidencia
> Usa los conocimientos del paciente para tomar decisiones | Do not know | National | Regularly | 119051003447 |
| Lived experience submissions on new treatments and medicines, part of national working group looking at HTA reform, part of industry campaign to improve timeliness of HTA approval [Australia]. | Respiratorio
> Enfermedades pulmonares | Aportaciones del paciente basadas en evidencia
> Aproveche las historias de pacientes y narrativas de experiencias vividas | Over 100,000 | National | Regularly | 119011106646 |
| We support and advocate for enhancement of the involvement of patients/carers in Health Technology. We have been involved in the Co design group Enhancing Consumer involvement in Australian Health technology assessment and in the HTA Review process. | Cáncer
> Cáncer: la mayoría de los tipos | Aportaciones del paciente basadas en evidencia
> Aproveche las historias de pacientes y narrativas de experiencias vividas | We do not communicate with patients directly | Regional | Sometimes | 119031444677 |
| HTA [Health Technology Assessment] — lived experience. | Respiratorio
> Enfermedades pulmonares | Aportaciones del paciente basadas en evidencia
> Aproveche las historias de pacientes y narrativas de experiencias vividas | Over 100,000 | National | Regularly | 119051865995 |
| Our organisation exists to represent the interests of both community-led mental health service organisations and also the lived experience consumer community. A recent example of our work representing patient interests to regulators that are responsible for deciding drug pricing was recent correspondence we issued to the Australian Pharmaceutical Benefits Advisory Committee, requesting that a drug for the treatment of schizophrenia be listed on the Pharmaceutical Benefits Scheme. In this correspondence, we directly represented the views of patients and family and carers. | Salud mental
> Salud mental: la mayoría de las condiciones | Aportaciones del paciente basadas en evidencia
> Aproveche las historias de pacientes y narrativas de experiencias vividas | 10,000 | National | Sometimes | 119074282308 |
| Pricing, clinical trials. | Reumático
> Lupus | Diagnóstico y entrega de medicamentos
> Colaborar en el diseño de ensayos clínicos | 5,000 | International | Regularly | 119058972997 |
| We provide expertise to regulatory and funding decision-makers on topics like newborn screening, medicine listing, and model of care funding. | Raro
> Trastornos raros: genéticos | Diagnóstico y entrega de medicamentos
> Apoyo al tamizaje y detección temprana | 1,000 | National | Sometimes | 119054286714 |
| We provide expertise to regulatory and funding decision-makers on topics like newborn screening, medicine listing, and model of care funding. | Raro
> Trastornos raros: genéticos | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 1,000 | National | Sometimes | 119054286714 |
| Preterm Infants Parents Association [PIPA] has representatives on numerous hospital and Queensland Health Department committees. | Salud infantil
> Neonatal | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 5,000 | Regional | Regularly | 119074312093 |
| Through an HTA [Health Technology Assessment] implementation review, direct advocacy around drug access and pricing, part of roundtables to more effectively advocate patient interests for change. | Neurológico
> Neurológico: otro | Gobernanza institucional
> Trabajando eficazmente dentro de redes de múltiples partes interesadas | We do not communicate with patients directly | National | Regularly | 119069368666 |
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