| 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 Tecnologías Sanitarias (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 Tecnologías Sanitarias (ETS) y reembolso | 1000 | 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 Tecnologías Sanitarias (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 Tecnologías Sanitarias (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 Tecnologías Sanitarias (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 Tecnologías Sanitarias (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 Tecnologías Sanitarias (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
> Enfermedades raras: genéticas | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 1000 | 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 Tecnologías Sanitarias (ETS) y reembolso | Over 100,000 | National | Regularly | 119058351283 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Cardiovascular
> Enfermedades cardiovasculares y del corazón | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (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 afecciones | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (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 políticos/reguladores | 1000 | 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 afecciones | 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 en políticas y legislación
> Influir en la política sanitaria y la legislación | 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 en políticas y legislación
> Influir en la política sanitaria y la legislación | 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 en políticas y legislación
> Influir en la política sanitaria y la legislación | Over 100,000 | National | Regularly | 119058351283 |
| Where possible, we add our advocacy voice to decision-makers. | Neuromuscular
> Distrofia muscular | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 1000 | 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 en políticas y legislación
> Participar en audiencias públicas y consultas | Do not know | National | Regularly | 119051003447 |
| Public submissions. | Investigación médica
> Investigación médica | Impactando en 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 en 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 los 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 los medicamentos | Over 100,000 | National | Regularly | 119058351283 |
| Pricing. | Reumático
> Lupus | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 5000 | 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 los 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 | 5000 | 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
> Enfermedades raras: genéticas | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 1000 | 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 afecciones | 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 | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | National | Regularly | 119021570524 |
| Weight loss drugs, general medicine costs. | Defensa del paciente
> Derechos del paciente | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | National | Sometimes | 119055318270 |
| Regulations and restrictions regarding prescribing of antivirals for COVID to our patient cohort [neurological conditions]. | Neurológico
> Neurológico: otro | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 5000 | National | Rarely | 119056702514 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Cardiovascular
> Enfermedades cardiovasculares y del corazón | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 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 | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | We do not communicate with patients directly | National | Regularly | 119069368666 |
| Through an HTA [Health Technology Assessment] implementation review. | Neurológico
> Neurológico: otro | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 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 | Mejora de 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) | Mejora de las vías de acceso
> Mejora del acceso a terapias raras/ultrararas | 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
> Utiliza 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
> Aprovechar las historias de pacientes y los relatos 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
> Aprovechar las historias de pacientes y los relatos 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
> Aprovechar las historias de pacientes y los relatos 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 afecciones | Aportaciones del paciente basadas en evidencia
> Aprovechar las historias de pacientes y los relatos 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 | 5000 | 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
> Enfermedades raras: genéticas | Diagnóstico y entrega de medicamentos
> Apoyo al cribado y la detección temprana | 1000 | 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
> Enfermedades raras: genéticas | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 1000 | 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 órganos consultivos gubernamentales | 5000 | 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
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | We do not communicate with patients directly | National | Regularly | 119069368666 |
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