| 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]. | Respiratory
> Lung diseases | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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
> Muscular dystrophy | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Cancer
> Cancer: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Kidney
> Kidney diseases | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Respiratory
> Asthma | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | Over 100,000 | National | Regularly | 119051065145 |
| PBAC [Pharmaceutical Benefits Advisory Committee] comments. | Skin
> Atopic dermatitis/eczema | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | Over 100,000 | National | Regularly | 119051082840 |
| HTA [Health Technology Assessment] — lived experience. | Respiratory
> Lung diseases | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Rare
> Rare disorders: genetic | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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 | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | Over 100,000 | National | Regularly | 119058351283 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Cardiovascular
> Cardiovascular & heart conditions | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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 health
> Mental health: most conditions | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Respiratory
> Asthma | Regulatory partnership
> Contribute to Marketing Authorisation submissions | 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
> Muscular dystrophy | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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 health
> Mental health: most conditions | Regulatory partnership
> With other healthcare advocates | 10,000 | National | Sometimes | 119074282308 |
| Regular advocacy and lobbying to all levels of government on new and current diabetes medications and technology. | Endocrine
> Diabetes (both types 1 and 2) | Impacting policy and legislation
> Influence healthcare policy and legislation | 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. | Respiratory
> Asthma | Impacting policy and legislation
> Influence healthcare policy and legislation | 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 | Impacting policy and legislation
> Influence healthcare policy and legislation | Over 100,000 | National | Regularly | 119058351283 |
| Where possible, we add our advocacy voice to decision-makers. | Neuromuscular
> Muscular dystrophy | Impacting policy and legislation
> Influence healthcare policy and legislation | 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. | Kidney
> Kidney diseases | Impacting policy and legislation
> Participate in public hearings and consultations | Do not know | National | Regularly | 119051003447 |
| Public submissions. | Medical research
> Medical research | Impacting policy and legislation
> Participate in public hearings and consultations | 100 | National | Sometimes | 119075599019 |
| Pre-Budget Submissions, Advocacy activities, Meetings. | Rheumatic
> Rheumatic diseases: most types | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | Over 100,000 | National | Regularly | 119017682842 |
| Weight loss drugs, general medicine costs. | Patient advocacy
> Patient rights | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 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 | Pricing and affordability advocacy
> Advocate for fair medicine pricing | Over 100,000 | National | Regularly | 119058351283 |
| Pricing. | Rheumatic
> Lupus | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 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. | Neurological
> Neurological: other | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 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. | Infectious
> Immunisation | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 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. | Bone
> Fibrodysplasia ossificans progressiva (FOP) | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 100 | National | Rarely | 119044789085 |
| Australia's PBS [Pharmaceutical Benefits Scheme] listings as an example. | Kidney
> Kidney diseases | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 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. | Rare
> Rare disorders: genetic | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 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 health
> Mental health: most conditions | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 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
> Muscular dystrophy | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 1,000 | National | Regularly | 119021570524 |
| Weight loss drugs, general medicine costs. | Patient advocacy
> Patient rights | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 100,000 | National | Sometimes | 119055318270 |
| Regulations and restrictions regarding prescribing of antivirals for COVID to our patient cohort [neurological conditions]. | Neurological
> Neurological: other | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 5,000 | National | Rarely | 119056702514 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Cardiovascular
> Cardiovascular & heart conditions | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Neurological
> Neurological: other | Improving access pathways
> Facilitate equitable access to medicines/healthcare | We do not communicate with patients directly | National | Regularly | 119069368666 |
| Through an HTA [Health Technology Assessment] implementation review. | Neurological
> Neurological: other | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Infectious
> Immunisation | Improving access pathways
> Advocate for wider vaccine access | 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. | Bone
> Fibrodysplasia ossificans progressiva (FOP) | Improving access pathways
> Improving access to rare/ultra-rare therapies | 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. | Kidney
> Kidney diseases | Evidence-based patient input
> Use patient insights to inform decisions | 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]. | Respiratory
> Lung diseases | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | 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. | Cancer
> Cancer: most types | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | We do not communicate with patients directly | Regional | Sometimes | 119031444677 |
| HTA [Health Technology Assessment] — lived experience. | Respiratory
> Lung diseases | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | 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 health
> Mental health: most conditions | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | 10,000 | National | Sometimes | 119074282308 |
| Pricing, clinical trials. | Rheumatic
> Lupus | Diagnosis and medicines delivery
> Collaborate on clinical trial design | 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. | Rare
> Rare disorders: genetic | Diagnosis and medicines delivery
> Support screening and early detection | 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. | Rare
> Rare disorders: genetic | Institutional governance
> Ensure representation within governmental advisory bodies | 1,000 | National | Sometimes | 119054286714 |
| Preterm Infants Parents Association [PIPA] has representatives on numerous hospital and Queensland Health Department committees. | Children's health
> Neonatal | Institutional governance
> Ensure representation within governmental advisory bodies | 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. | Neurological
> Neurological: other | Institutional governance
> Working effectively within multi-stakeholder networks | We do not communicate with patients directly | National | Regularly | 119069368666 |
interactions
actions & advocacy
14 mentions
