| 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]. | Respiratorisk
> Lungesygdomme | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Neuromuskulær
> Muskeldystrofi | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Kræft
> Kræft: de fleste typer | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Nyre
> Nyresygdomme | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Respiratorisk
> Astma | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | Over 100,000 | National | Regularly | 119051065145 |
| PBAC [Pharmaceutical Benefits Advisory Committee] comments. | Hud
> Atopisk dermatitis/eksem | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | Over 100,000 | National | Regularly | 119051082840 |
| HTA [Health Technology Assessment] — lived experience. | Respiratorisk
> Lungesygdomme | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Sjælden
> Sjældne sygdomme: genetisk | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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 | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | Over 100,000 | National | Regularly | 119058351283 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Kardiovaskulær
> Hjerte-kar-sygdomme & hjertetilstande | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Mental sundhed
> Psykisk helbred: de fleste tilstande | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Respiratorisk
> Astma | Regulatorisk partnerskab
> Bidrag til ansøgninger om markedsføringstilladelse | 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. | Neuromuskulær
> Muskeldystrofi | Regulatorisk partnerskab
> Deltag i/faciliter møder med politiske beslutningstagere/regulatorer | 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. | Mental sundhed
> Psykisk helbred: de fleste tilstande | Regulatorisk partnerskab
> Med andre sundhedsforkæmpere | 10.000 | National | Sometimes | 119074282308 |
| Regular advocacy and lobbying to all levels of government on new and current diabetes medications and technology. | Endokrin
> Diabetes (både type 1 og type 2) | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 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. | Respiratorisk
> Astma | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 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 | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | Over 100,000 | National | Regularly | 119058351283 |
| Where possible, we add our advocacy voice to decision-makers. | Neuromuskulær
> Muskeldystrofi | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 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. | Nyre
> Nyresygdomme | Indflydelse på politik og lovgivning
> Deltag i offentlige høringer og konsultationer | Do not know | National | Regularly | 119051003447 |
| Public submissions. | Medicinsk forskning
> Medicinsk forskning | Indflydelse på politik og lovgivning
> Deltag i offentlige høringer og konsultationer | 100 | National | Sometimes | 119075599019 |
| Pre-Budget Submissions, Advocacy activities, Meetings. | Reumatisk
> Reumatiske sygdomme: de fleste typer | Indflydelse på politik og lovgivning
> Mobiliser parlamentarikere og politiske ledere | Over 100,000 | National | Regularly | 119017682842 |
| Weight loss drugs, general medicine costs. | Patientadvokatur
> Patientrettigheder | Prisfastsættelse og overkommelighed
> Fortaler for retfærdig medicinprissætning | 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 | Prisfastsættelse og overkommelighed
> Fortaler for retfærdig medicinprissætning | Over 100,000 | National | Regularly | 119058351283 |
| Pricing. | Reumatisk
> Lupus | Prisfastsættelse og overkommelighed
> Fortaler for retfærdig medicinprissætning | 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. | Neurologisk
> Neurologisk: andet | Prisfastsættelse og overkommelighed
> Fortaler for retfærdig medicinprissætning | 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. | Smitsom
> Immunisering | Prisfastsættelse og overkommelighed
> Fortalelse af optagelse af produktet på refusionslister/nationale formularer | 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. | Knogle
> Fibrodysplasia ossificans progressiva (FOP) | Prisfastsættelse og overkommelighed
> Fortalelse af optagelse af produktet på refusionslister/nationale formularer | 100 | National | Rarely | 119044789085 |
| Australia's PBS [Pharmaceutical Benefits Scheme] listings as an example. | Nyre
> Nyresygdomme | Prisfastsættelse og overkommelighed
> Fortalelse af optagelse af produktet på refusionslister/nationale formularer | 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. | Sjælden
> Sjældne sygdomme: genetisk | Prisfastsættelse og overkommelighed
> Fortalelse af optagelse af produktet på refusionslister/nationale formularer | 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. | Mental sundhed
> Psykisk helbred: de fleste tilstande | Prisfastsættelse og overkommelighed
> Fortalelse af optagelse af produktet på refusionslister/nationale formularer | 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. | Neuromuskulær
> Muskeldystrofi | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 1.000 | National | Regularly | 119021570524 |
| Weight loss drugs, general medicine costs. | Patientadvokatur
> Patientrettigheder | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 100.000 | National | Sometimes | 119055318270 |
| Regulations and restrictions regarding prescribing of antivirals for COVID to our patient cohort [neurological conditions]. | Neurologisk
> Neurologisk: andet | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 5.000 | National | Rarely | 119056702514 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Kardiovaskulær
> Hjerte-kar-sygdomme & hjertetilstande | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 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. | Neurologisk
> Neurologisk: andet | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | We do not communicate with patients directly | National | Regularly | 119069368666 |
| Through an HTA [Health Technology Assessment] implementation review. | Neurologisk
> Neurologisk: andet | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 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. | Smitsom
> Immunisering | Forbedring af adgangsveje
> Fortaler for bredere vaccinationsadgang | 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. | Knogle
> Fibrodysplasia ossificans progressiva (FOP) | Forbedring af adgangsveje
> Forbedring af adgangen til sjældne/ultrasjældne behandlinger | 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. | Nyre
> Nyresygdomme | Evidensbaseret patientinput
> Brug patientindsigt til at informere beslutninger | 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]. | Respiratorisk
> Lungesygdomme | Evidensbaseret patientinput
> Udnyt patienthistorier og fortællinger om levede erfaringer | 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. | Kræft
> Kræft: de fleste typer | Evidensbaseret patientinput
> Udnyt patienthistorier og fortællinger om levede erfaringer | We do not communicate with patients directly | Regional | Sometimes | 119031444677 |
| HTA [Health Technology Assessment] — lived experience. | Respiratorisk
> Lungesygdomme | Evidensbaseret patientinput
> Udnyt patienthistorier og fortællinger om levede erfaringer | 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. | Mental sundhed
> Psykisk helbred: de fleste tilstande | Evidensbaseret patientinput
> Udnyt patienthistorier og fortællinger om levede erfaringer | 10.000 | National | Sometimes | 119074282308 |
| Pricing, clinical trials. | Reumatisk
> Lupus | Diagnose og medicinlevering
> Samarbejd om design af kliniske forsøg | 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. | Sjælden
> Sjældne sygdomme: genetisk | Diagnose og medicinlevering
> Støtte til screening og tidlig opdagelse | 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. | Sjælden
> Sjældne sygdomme: genetisk | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 1.000 | National | Sometimes | 119054286714 |
| Preterm Infants Parents Association [PIPA] has representatives on numerous hospital and Queensland Health Department committees. | Børns sundhed
> Neonatal | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 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. | Neurologisk
> Neurologisk: andet | Institutionel styring
> Effektivt arbejde i netværk med flere interessenter | We do not communicate with patients directly | National | Regularly | 119069368666 |