| 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]. | Respiratório
> Doenças pulmonares | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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 | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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. | Cancro
> Cancro: a maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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. | Rim
> Doenças renais | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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. | Respiratório
> Asma | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | Over 100,000 | National | Regularly | 119051065145 |
| PBAC [Pharmaceutical Benefits Advisory Committee] comments. | Pele
> Dermatite atópica/eczema | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | Over 100,000 | National | Regularly | 119051082840 |
| HTA [Health Technology Assessment] — lived experience. | Respiratório
> Doenças pulmonares | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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
> Doenças raras: genética | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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 | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | Over 100,000 | National | Regularly | 119058351283 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Cardiovascular
> Doenças cardiovasculares & cardíacas | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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. | Saúde mental
> Saúde mental: a maioria das condições | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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. | Respiratório
> Asma | Parceria regulatória
> Contribuir para submissões de Autorização de Introdução no Mercado | 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 | Parceria regulatória
> Participar/facilitar reuniões com decisores 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. | Saúde mental
> Saúde mental: a maioria das condições | Parceria regulatória
> Com outros defensores de saúde | 10 000 | National | Sometimes | 119074282308 |
| Regular advocacy and lobbying to all levels of government on new and current diabetes medications and technology. | Endócrino
> Diabetes (tipos 1 e 2) | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 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. | Respiratório
> Asma | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 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 | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | Over 100,000 | National | Regularly | 119058351283 |
| Where possible, we add our advocacy voice to decision-makers. | Neuromuscular
> Distrofia muscular | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 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. | Rim
> Doenças renais | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | Do not know | National | Regularly | 119051003447 |
| Public submissions. | Investigação médica
> Investigação médica | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 100 | National | Sometimes | 119075599019 |
| Pre-Budget Submissions, Advocacy activities, Meetings. | Reumático
> Doenças reumáticas: a maioria dos tipos | Impacto nas políticas e legislação
> Mobilizar parlamentares e líderes políticos | Over 100,000 | National | Regularly | 119017682842 |
| Weight loss drugs, general medicine costs. | Defesa do doente
> Direitos do doente | Defesa de preços e acessibilidade financeira
> Defender preços justos para 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 | Defesa de preços e acessibilidade financeira
> Defender preços justos para medicamentos | Over 100,000 | National | Regularly | 119058351283 |
| Pricing. | Reumático
> Lúpus | Defesa de preços e acessibilidade financeira
> Defender preços justos para 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: outro | Defesa de preços e acessibilidade financeira
> Defender preços justos para 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. | Infecciosa
> Imunização | Defesa de preços e acessibilidade financeira
> Defender a inclusão do produto em listas de reembolso/formulários nacionais | 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. | Osso
> Fibrodisplasia ossificante progressiva (FOP) | Defesa de preços e acessibilidade financeira
> Defender a inclusão do produto em listas de reembolso/formulários nacionais | 100 | National | Rarely | 119044789085 |
| Australia's PBS [Pharmaceutical Benefits Scheme] listings as an example. | Rim
> Doenças renais | Defesa de preços e acessibilidade financeira
> Defender a inclusão do produto em listas de reembolso/formulários nacionais | 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
> Doenças raras: genética | Defesa de preços e acessibilidade financeira
> Defender a inclusão do produto em listas de reembolso/formulários nacionais | 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. | Saúde mental
> Saúde mental: a maioria das condições | Defesa de preços e acessibilidade financeira
> Defender a inclusão do produto em listas de reembolso/formulários nacionais | 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 | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 1000 | National | Regularly | 119021570524 |
| Weight loss drugs, general medicine costs. | Defesa do doente
> Direitos do doente | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 100 000 | National | Sometimes | 119055318270 |
| Regulations and restrictions regarding prescribing of antivirals for COVID to our patient cohort [neurological conditions]. | Neurológico
> Neurológico: outro | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 5000 | National | Rarely | 119056702514 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Cardiovascular
> Doenças cardiovasculares & cardíacas | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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: outro | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | We do not communicate with patients directly | National | Regularly | 119069368666 |
| Through an HTA [Health Technology Assessment] implementation review. | Neurológico
> Neurológico: outro | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Infecciosa
> Imunização | Melhorar os caminhos de acesso
> Defender um acesso mais amplo às vacinas | 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. | Osso
> Fibrodisplasia ossificante progressiva (FOP) | Melhorar os caminhos de acesso
> Melhorar o acesso 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. | Rim
> Doenças renais | Contribuição do doente baseada em evidências
> Utilize os insights dos pacientes para informar decisões | 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]. | Respiratório
> Doenças pulmonares | Contribuição do doente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências 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. | Cancro
> Cancro: a maioria dos tipos | Contribuição do doente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências vividas | We do not communicate with patients directly | Regional | Sometimes | 119031444677 |
| HTA [Health Technology Assessment] — lived experience. | Respiratório
> Doenças pulmonares | Contribuição do doente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências 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. | Saúde mental
> Saúde mental: a maioria das condições | Contribuição do doente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências vividas | 10 000 | National | Sometimes | 119074282308 |
| Pricing, clinical trials. | Reumático
> Lúpus | Diagnóstico e entrega de medicamentos
> Colaborar no design de ensaios 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
> Doenças raras: genética | Diagnóstico e entrega de medicamentos
> Apoiar o rastreio e a deteção precoce | 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
> Doenças raras: genética | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 1000 | National | Sometimes | 119054286714 |
| Preterm Infants Parents Association [PIPA] has representatives on numerous hospital and Queensland Health Department committees. | Saúde infantil
> Neonatal | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 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: outro | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | We do not communicate with patients directly | National | Regularly | 119069368666 |
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