PatientView | Canada insights from Patient Groups: A seat at the pricing table

Patient group goals

The percentages below highlight how the 58 patient groups interact with regulators and advocate for patient interests. As respondents may be represented in more than one area, percentages may not total 100%.

interactions

How patient groups interact with drug regulators

Find out what the goals mean

36 mentions

9 mentions

6 mentions

4 mentions

2 mentions

actions & advocacy

How patient groups get access to medicines

Find out what the goals mean

17 mentions

14 mentions

7 mentions

2 mentions

English text	Therapy area	Category	Patients reached	Geo reach	Regulatory engagement	Respondent
We often advocate for the acceptance of new drugs to market, the inclusion of vision care products to provincial health coverages, and our members take part in CDA [Canadian Drug Agency] surveys and sessions.	Visual impairment > Visual impairment	Regulatory partnership > Working with regulatory bodies	Do not know	National	Sometimes	119063928324
Submissions to the provincial government and advisory briefs to the to INESSS [Institut National d'Excellence en Santé et en Services Sociaux – National Institute of Excellence in Health and Social Services].	Visual impairment > Macular degeneration	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	Regional	Regularly	115043530962
INESSS [Institut national d'excellence en santé et en services sociaux – National Institute of Excellence in Health and Social Services].	Neurological > Multiple sclerosis	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	10,000	National	Regularly	115059223657
Patient Group Evidence submissions to Canada's Drug Agency (CADTH [Canadian Agency for Drugs and Technologies in Health]), INESSS [Institut national d'excellence en santé et en services sociaux - National Institute of Excellence in Health and Social Services] and BC [British Columbia] Pharmacare.	Respiratory > COPD	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Sometimes	119013149214
Canadian Drug Agency patient submissions. INESSS [Institut national d'excellence en santé et en services sociaux] (Quebec) patient submissions.	Respiratory > Asthma and allergy	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Regularly	119021123567
Canadian Drug Agency patient submissions.	Respiratory > Asthma and allergy	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Regularly	119021123567
HTA [Health Technology Assessment] submissions.	Skin > Skin conditions: most types	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Regularly	119022981107
We write letters to pCPA [pan-Canadian Pharmaceutical Alliance] when necessary. We write submissions to the HCA [Health Canada Assessment] process (CDA [Canada's Drug Agency] and INESSS [National Institute for Excellence in Health and Social Services]).	Cancer > Cancer: blood	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	10,000	National	Regularly	119031899906
We do regular submissions for HTA [Health Technology Assessment] and have active relationships with government decision-makers at many levels.	Gastrointestinal > Gastrointestinal: most types	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Regularly	119037340441
We do regular submissions for HTA [Health Technology Assessment].	Gastrointestinal > Gastrointestinal: most types	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Regularly	119037340441
CDA [Canada's Drug Agency] and pCPA [pan-Canadian Pharmaceutical Alliance].	Cardiovascular > Cardiovascular & heart conditions	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	10,000	International	Sometimes	119040619515
Patient stories for CADTH [Canadian Drug and Health Technology] and INESS [Institut national d'excellence en santé et en services sociaux – National Institute of Excellence in Health and Social Services].	General health > General health	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	10,000	National	Sometimes	119042243488
Through the CDA-AMC [Canadian Drug Agency – Agence des médicaments du Canada].	Cancer > Cancer: skin	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	5,000	National	Regularly	119042855470
Heal Canada represents patient interests to regulators and pricing authorities by translating lived patient experience into structured, evidence-based policy input that is directly relevant to health technology assessment (HTA [Health Technology Assessment]) and reimbursement decision-making.	Patient advocacy > Health activist	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	We do not communicate with patients directly	National	Sometimes	119044376594
Heal Canada represents patient interests to regulators and pricing authorities by translating lived patient experience into structured, evidence-based policy input that is directly relevant to health technology assessment (HTA) and reimbursement decision-making. This includes generating patient-reported outcomes (PROs), real-world evidence (RWE), and qualitative patient insight that articulate unmet needs, quality-of-life impact, treatment burden, access barriers, and real-world value beyond clinical endpoints.	Patient advocacy > Health activist	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	We do not communicate with patients directly	National	Sometimes	119044376594
Part of CDA [Canada’s Drug Agency] review process.	Respiratory > Lung diseases	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	10,000	Regional	Rarely	119044465336
Advocating to Canadian regulatory bodies for increased scope of coverage for mTOR [mechanistic Target of Rapamycin] inhibitors.	Rare > Rare diseases: other	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	1,000	National	Sometimes	119045262810
Sitting on advisory boards at HTAs [Health Technology Assessments] and providing patient feedback to the Federal Government.	Cancer > Cancer: breast	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Regularly	119049015873
INESSS [Institut national d'excellence en santé et en services sociaux – National Institute of Excellence in Health and Social Services], but not for pricing, only for macro-level improvements to access.	Cancer > Cancer: most types	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	1,000	Regional	Sometimes	119050786265
Submitted patient group input to Canadian Drug Agency regarding new medications for alopecia areata to public and private payers.	Skin > Alopecia	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	5,000	National	Sometimes	119050829703
CDA [Canadian Drug Agency] submissions, working with each provincial formulary.	Respiratory > Pulmonary fibrosis	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Regularly	119050864232
Meetings with INESSS [Institut national d'excellence en santé et en services sociaux – National Institute of Excellence in Health and Social Services] and the CDA [Canadian Drug Agency – Agence des médicaments du Canada] regarding drug access issues.	Cancer > Cancer: blood	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	5,000	National	Regularly	119050868250
HTA [Health Technology Assessment] submissions for new treatments.	Cancer > Cancer: bladder	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	10,000	National	Sometimes	119051388329
We provide patient input to Canada's Drug Agency when they are deciding whether or not to recommend public reimbursement for new drugs.	Visual impairment > Visual impairment	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Regularly	119061542318
We raise awareness of emerging issues relating to drug pricing to keep patients, survivors, and caregivers. We also submit on behalf of people with lived experience through the HTA [Health Technology Assessment] opportunities with CDA-AMC [Canada's Drug Agency – Agence des médicaments du Canada] and INESSS [Institut national d'excellence en santé et en services sociaux – National Institute of Excellence in Health and Social Services].	Cancer > Cancer: most types	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	1,000	National	Regularly	119068300611
Mostly drug reimbursement approval, but that touches on pricing as well. We participate in patient group submissions that are used in those reviews. We have done this for two new drugs in the past few years.	Rare > Pompe disease	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100	National	Rarely	119070062251
We submit HTA [Health Technology Assessment] submissions to Canada Drug Agency.	Respiratory > Pulmonary fibrosis	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Regularly	119070095029
CDA [Canadian Drug Agency – Agence des médicaments du Canada], INESSS [Institut national d'excellence en santé et en services sociaux – National Institute of Excellence in Health and Social Services].	Cancer > Cancer: colorectal	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	10,000	National	Regularly	119070177334
Submissions to regulatory and advisory bodies including INESSS [Institut national d'excellence en santé et en services sociaux – Quebec's health technology assessment agency] and the Canadian Drug Agency (CDA [Canadian Drug Agency]) regarding access to obesity treatments and patient perspectives on care.	General health > Obesity	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	International	Regularly	119071517799
CDA [Canada's Drug Agency] AMC [Agence des médicaments du Canada], INESSS [National Institute of Excellence in Health and Social Services].	General health > Obesity	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100,000	National	Regularly	119072155321
HTA [Health Technology Assessment] assessments and reimbursement reviews.	Patient education > Patient education	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	Do not know	National	Sometimes	119073221885
We participated in a Canada Drug Agency review of COPD [Chronic Obstructive Pulmonary Disease] medication access recently.	Respiratory > Lung diseases	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	Do not know	National	Rarely	119074014255
Patient submissions to CDA [Canada's Drug Agency].	Rheumatic > Lupus	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	We do not communicate with patients directly	National	Regularly	119076616920
We advocate for the approval and reimbursement of medications that improve sight or prevent sight loss.	Visual impairment > Visual impairment	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	Do not know	National	Regularly	119076796006
We fully support new technologies and therapies to Health Canada.	Disability > Disability: other	Regulatory partnership > Contribute to Marketing Authorisation submissions	5,000	National	Regularly	119070019511
Pre-budget submissions to Federal and Provincial governments and appearance before Senate and legislature committees.	Older people > Older people	Regulatory partnership > Attend/facilitate meetings with policymakers/regulators	100,000	National	Regularly	119020601606
Sitting on advisory boards at HTAs [Health Technology Assessments] and providing patient feedback to the Federal Government.	Cancer > Cancer: breast	Regulatory partnership > Attend/facilitate meetings with policymakers/regulators	100,000	National	Regularly	119049015873
Represent patient issues to regulators.	Rare > Rare diseases: blood	Regulatory partnership > Attend/facilitate meetings with policymakers/regulators	We do not communicate with patients directly	National	Regularly	119078414468
Patients participate in Town Halls where some of these issues are addressed.	Blood > Sickle cell disease	Regulatory partnership > With other healthcare advocates	100	Regional	Rarely	119026823537
Submissions to regulatory and advisory bodies including INESSS [Institut national d'excellence en santé et en services sociaux – Quebec's health technology assessment agency] and the Canadian Drug Agency (CDA [Canadian Drug Agency]) regarding access to obesity treatments and patient perspectives on care.	Visual impairment > Macular degeneration	Impacting policy and legislation > Influence healthcare policy and legislation	100,000	Regional	Regularly	115043530962
We have intervened at price review boards, advocated to policymakers and government officials, been invited to national roundtables by governments and also by pharma, etc.	Older people > Older people	Impacting policy and legislation > Influence healthcare policy and legislation	10,000	National	Regularly	119044669631
HTA submissions, other public consultations, awareness-building.	Skin > Skin conditions: most types	Impacting policy and legislation > Participate in public hearings and consultations	100,000	National	Regularly	119022981107
Provincial Legislative Advocacy days yearly.	Rheumatic > Scleroderma	Impacting policy and legislation > Participate in public hearings and consultations	5,000	National	Regularly	119071951250
Media representation and direct advocacy to provincial Members of Parliament.	Rare > Rare disorders: genetic	Impacting policy and legislation > Mobilise parliamentarians and political leaders	1,000	Regional	Sometimes	115035427287
Pre-budget submissions to Federal and Provincial governments and appearance before Senate and legislature committees.	Older people > Older people	Impacting policy and legislation > Mobilise parliamentarians and political leaders	100,000	National	Regularly	119020601606
We have intervened at price review boards, advocated to policymakers and government officials, been invited to national roundtables by governments and also by pharma, etc.	Older people > Older people	Impacting policy and legislation > Mobilise parliamentarians and political leaders	10,000	National	Regularly	119044669631
Getting Besrem [immunotherapy used to treat polycythemia vera in adults] approved by Health Canada for emergency use.	Cancer > Cancer: blood	Impacting policy and legislation > Addressing barriers/anomalies in medical care	1,000	National	Sometimes	119022124095
We advocate for the approval and reimbursement of medications that improve sight or prevent sight loss.	Visual impairment > Visual impairment	Impacting policy and legislation > Addressing barriers/anomalies in medical care	Do not know	National	Regularly	119076796006
Signed letter to PCPA [Pan-Canadian Pharmaceutical Alliance] when a negotiation is taking longer than usual or when a negotiation fails.	Cancer > Cancer: blood	Pricing and affordability advocacy > Advocate for fair medicine pricing	5,000	National	Sometimes	119020401468
... Heal Canada engages in formal submissions, consultations, advisory processes, and collaborative stakeholder dialogues to ensure patient perspectives are embedded in pricing, reimbursement, and access frameworks—particularly where traditional cost-effectiveness models fail to capture the full human, social, and system-level value of therapies.	Patient advocacy > Health activist	Pricing and affordability advocacy > Advocate for fair medicine pricing	We do not communicate with patients directly	National	Sometimes	119044376594
We rally our community when there are ASM [Anti-Seizure Medication] shortages and to support price regulations for medication for patients with epilepsy.	Neurological > Epilepsy	Pricing and affordability advocacy > Advocate for fair medicine pricing	5,000	Local	Regularly	119050807827
We raise awareness of emerging issues relating to drug pricing to keep patients, survivors, and caregivers informed.	Cancer > Cancer: most types	Pricing and affordability advocacy > Advocate for fair medicine pricing	1,000	National	Regularly	119068300611
I was a member of the PMRB [Patented Medicine Prices Review Board] representing the patient perspective and have written numerous submissions to the authorities about drug access and pricing.	Cancer > Cancer: blood	Pricing and affordability advocacy > Advocate for fair medicine pricing	5,000	National	Regularly	119068939499
Mostly drug reimbursement approval, but that touches on pricing as well.	Rare > Pompe disease	Pricing and affordability advocacy > Advocate for fair medicine pricing	100	National	Rarely	119070062251
Signed letter to PCPA [Pan-Canadian Pharmaceutical Alliance] when a negotiation is taking longer than usual or when a negotiation fails.	Cancer > Cancer: blood	Pricing and affordability advocacy > Engage in price-review board negotiations	5,000	National	Sometimes	119020401468
We have submitted to the PMPRB [Patented Medicine Prices Review Board], taken part in two PPRP RFPs [Requests for Proposal], have conversations with formulary managers at provincial Ministries of Health, and the pCPA [pan-Canadian Pharmaceutical Alliance, alliance of Canada's federal, provincial, and territorial public drug plans that negotiates drug prices on behalf of public payers.].	Immune > Primary immunodeficiencies	Pricing and affordability advocacy > Engage in price-review board negotiations	5,000	National	Sometimes	119044550257
We have intervened at price review boards, advocated to policymakers and government officials, been invited to national roundtables by governments and also by pharma, etc.	Older people > Older people	Pricing and affordability advocacy > Engage in price-review board negotiations	10,000	National	Regularly	119044669631
... In the past, we have also advocated directly with the pCPA [Provincial Council for Drug Programs], which negotiates drug prices, but this is not a regular occurrence.	Visual impairment > Visual impairment	Pricing and affordability advocacy > Engage in price-review board negotiations	100,000	National	Regularly	119061542318
We write letters to pCPA [pan-Canadian Pharmaceutical Alliance] when necessary.	Cancer > Cancer: blood	Pricing and affordability advocacy > Call for reduced selling prices from manufacturers	10,000	National	Regularly	119031899906
We have submitted to the PMPRB [Patented Medicine Prices Review Board], taken part in two PPRP RFPs [Requests for Proposal], have conversations with formulary managers at provincial Ministries of Health, and the pCPA [pan-Canadian Pharmaceutical Alliance].	Immune > Primary immunodeficiencies	Pricing and affordability advocacy > Tracking and monitoring drug pricing/drug shortages	5,000	National	Sometimes	119044550257
We rally our community when there are ASM [Anti-Seizure Medication] shortages and to support price regulations for medication for patients with epilepsy.	Neurological > Epilepsy	Pricing and affordability advocacy > Tracking and monitoring drug pricing/drug shortages	5,000	Local	Regularly	119050807827
We raise awareness of emerging issues relating to drug pricing to keep patients, survivors, and caregivers informed.	Cancer > Cancer: most types	Pricing and affordability advocacy > Tracking and monitoring drug pricing/drug shortages	1,000	National	Regularly	119068300611
Patient group submissions—not specific to pricing itself, but to approvals for coverage.	Mental health > Mental health: mood disorders	Pricing and affordability advocacy > Advocating for inclusion of product in reimbursement lists/national formularies	10,000	National	Rarely	119020492804
We have submitted to the PMPRB [Patented Medicine Prices Review Board], taken part in two PPRP RFPs [Requests for Proposal], have conversations with formulary managers at provincial Ministries of Health, and the pCPA [pan-Canadian Pharmaceutical Alliance].	Immune > Primary immunodeficiencies	Pricing and affordability advocacy > Advocating for inclusion of product in reimbursement lists/national formularies	5,000	National	Sometimes	119044550257
Advocacy alongside industry partners for new therapy market entry to Canada, approvals, and access through Provincial-Territorial formularies.	Neurological > Epilepsy	Pricing and affordability advocacy > Advocating for inclusion of product in reimbursement lists/national formularies	We do not communicate with patients directly	National	Regularly	119045277128
CDA [Canadian Drug Agency] submissions, working with each provincial formulary.	Respiratory > Pulmonary fibrosis	Pricing and affordability advocacy > Advocating for inclusion of product in reimbursement lists/national formularies	100,000	National	Regularly	119050864232
We often advocate for the acceptance of new drugs to market, the inclusion of vision care products to provincial health coverages, and our members take part in CDA [Canadian Drug Agency] surveys and sessions often.	Visual impairment > Visual impairment	Pricing and affordability advocacy > Advocating for inclusion of product in reimbursement lists/national formularies	Do not know	National	Sometimes	119063928324
Mostly drug reimbursement approval, but that touches on pricing as well.	Rare > Pompe disease	Pricing and affordability advocacy > Advocating for inclusion of product in reimbursement lists/national formularies	100	National	Rarely	119070062251
HTA submissions, other public consultations, awareness-building.	Skin > Skin conditions: most types	Pricing and affordability advocacy > Engaging in awareness campaigns	100,000	National	Regularly	119022981107
Getting Besrem [mmunotherapy used to treat polycythemia vera in adults] approved by Health Canada for emergency use.	Cancer > Cancer: blood	Improving access pathways > Facilitate equitable access to medicines/healthcare	1,000	National	Sometimes	119022124095
We don't provide information for drug pricing, just advocacy for drug approvals or access.	Rheumatic > Lupus	Improving access pathways > Facilitate equitable access to medicines/healthcare	5,000	Regional	No	119022371395
... Heal Canada engages in formal submissions, consultations, advisory processes, and collaborative stakeholder dialogues to ensure patient perspectives are embedded in pricing, reimbursement, and access frameworks—particularly where traditional cost-effectiveness models fail to capture the full human, social, and system-level value of therapies.	Patient advocacy > Health activist	Improving access pathways > Facilitate equitable access to medicines/healthcare	We do not communicate with patients directly	National	Sometimes	119044376594
Advocating to Canadian regulatory bodies for increased scope of coverage for mTOR [mechanistic Target of Rapamycin] inhibitors [a form of anti-cancer treatment].	Rare > Rare diseases: other	Improving access pathways > Facilitate equitable access to medicines/healthcare	1,000	National	Sometimes	119045262810
Advocacy alongside industry partners for new therapy market entry to Canada, approvals, and access.	Neurological > Epilepsy	Improving access pathways > Facilitate equitable access to medicines/healthcare	We do not communicate with patients directly	National	Regularly	119045277128
INESSS [Institut national d'excellence en santé et en services sociaux – National Institute of Excellence in Health and Social Services], but not for pricing, only for macro-level improvements to access.	Cancer > Cancer: most types	Improving access pathways > Facilitate equitable access to medicines/healthcare	1,000	Regional	Sometimes	119050786265
Meetings with INESSS [Institut national d'excellence en santé et en services sociaux – National Institute of Excellence in Health and Social Services] and the CDA [Canadian Drug Agency – Agence des médicaments du Canada] regarding drug access issues.	Cancer > Cancer: blood	Improving access pathways > Facilitate equitable access to medicines/healthcare	5,000	National	Regularly	119050868250
We frequently advocate for the approval of new drugs for market access.	Visual impairment > Visual impairment	Improving access pathways > Facilitate equitable access to medicines/healthcare	Do not know	National	Sometimes	119063928324
… and have written numerous submissions to the authorities about drug access and pricing.	Cancer > Cancer: blood	Improving access pathways > Facilitate equitable access to medicines/healthcare	5,000	National	Regularly	119068939499
Submissions to regulatory and advisory bodies including INESSS [Institut national d'excellence en santé et en services sociaux – Quebec's health technology assessment agency] and the Canadian Drug Agency (CDA [Canadian Drug Agency]) regarding access to obesity treatments and patient perspectives on care.	General health > Obesity	Improving access pathways > Facilitate equitable access to medicines/healthcare	100,000	International	Regularly	119071517799
Patient submissions to CDA [Canada's Drug Agency]. Ongoing national advocacy for equitable access to care and treatment.	Rheumatic > Lupus	Improving access pathways > Facilitate equitable access to medicines/healthcare	We do not communicate with patients directly	National	Regularly	119076616920
We often focus on vaccines, but not only those. We have intervened at price review boards, advocated to policymakers and government officials, been invited to national roundtables by governments and also by pharma, etc.	Older people > Older people	Improving access pathways > Advocate for wider vaccine access	10,000	National	Regularly	119044669631
We provide patient input to CDA [Canada Drug Agency] when they are deciding whether or not to recommend public reimbursement for new drugs. We also provide input to provinces.	Visual impairment > Visual impairment	Improving access pathways > Address disparities in access and management	100,000	National	Regularly	119061542318
There are not many new treatments for rare cancers, but when a new treatment or class is introduced, we act as Canada's advocacy group on behalf of sarcoma cancer patients.	Cancer > Cancer: sarcoma	Improving access pathways > Improving access to rare/ultra-rare therapies	5,000	National	Regularly	119078449674
Heal Canada represents patient interests to regulators and pricing authorities by translating lived patient experience into structured, evidence-based policy input that is directly relevant to health technology assessment (HTA [Health Technology Assessment]) and reimbursement decision-making.	Patient advocacy > Health activist	Evidence-based patient input > Use patient insights to inform decisions	We do not communicate with patients directly	National	Sometimes	119044376594
Submitted patient group input to Canadian Drug Agency regarding new medications for alopecia areata to public and private payers.	Skin > Alopecia	Evidence-based patient input > Use patient insights to inform decisions	5,000	National	Sometimes	119050829703
Mostly drug reimbursement approval, but that touches on pricing as well. We participate in patient group submissions that are used in those reviews. We have done this for two new drugs in the past few years.	Rare > Pompe disease	Evidence-based patient input > Use patient insights to inform decisions	100	National	Rarely	119070062251
Submissions to regulatory and advisory bodies including INESSS [Institut national d'excellence en santé et en services sociaux – Quebec's health technology assessment agency] and the Canadian Drug Agency (CDA [Canadian Drug Agency]) regarding access to obesity treatments and patient perspectives on care.	General health > Obesity	Evidence-based patient input > Use patient insights to inform decisions	100,000	International	Regularly	119071517799
Heal Canada represents patient interests to regulators and pricing authorities by translating lived patient experience into structured, evidence-based policy input that is directly relevant to health technology assessment (HTA) and reimbursement decision-making. This includes generating patient-reported outcomes (PROs), real-world evidence (RWE), and qualitative patient insight that articulate unmet needs, quality-of-life impact, treatment burden, access barriers, and real-world value beyond clinical endpoints.	Patient advocacy > Health activist	Evidence-based patient input > Provide Real-World Evidence (RWE) to regulatory agencies	We do not communicate with patients directly	National	Sometimes	119044376594
The lived experiences of patients are at the centre of Lupus Canada's work.	Rheumatic > Lupus	Evidence-based patient input > Leverage patient stories and lived-experience narratives	Do not know	National	Regularly	119041443233
Patient stories for CADTH [Canadian Drug and Health Technology] and INESS [Institut national d'excellence en santé et en services sociaux – National Institute of Excellence in Health and Social Services].	General health > General health	Evidence-based patient input > Leverage patient stories and lived-experience narratives	10,000	National	Sometimes	119042243488
Heal Canada represents patient interests to regulators and pricing authorities by translating lived patient experience into structured, evidence-based policy input that is directly relevant to health technology assessment (HTA) and reimbursement decision-making. This includes generating patient-reported outcomes (PROs), real-world evidence (RWE), and qualitative patient insight that articulate unmet needs, quality-of-life impact, treatment burden, access barriers, and real-world value beyond clinical endpoints.	Patient advocacy > Health activist	Evidence-based patient input > Leverage patient stories and lived-experience narratives	We do not communicate with patients directly	National	Sometimes	119044376594
We also submit on behalf of people with lived experience through the Health Technology Assessment opportunities with CAD-AMC [Canada's Drug Agency / l'Agence des médicaments du Canada (CDA-AMC)] and INESSS [Institut national d'excellence en santé et en services sociaux -National Institute of Excellence in Health and Social Services].	Cancer > Cancer: most types	Evidence-based patient input > Leverage patient stories and lived-experience narratives	1,000	National	Regularly	119068300611
We raise awareness of emerging issues relating to drug pricing to keep patients, survivors, and caregivers. We also submit on behalf of people with lived experience through the HTA [Health Technology Assessment] opportunities with CDA-AMC [Canada's Drug Agency – Agence des médicaments du Canada] and INESSS [Institut national d'excellence en santé et en services sociaux – National Institute of Excellence in Health and Social Services].	Cancer > Cancer: most types	Evidence-based patient input > Leverage patient stories and lived-experience narratives	1,000	National	Regularly	119068300611
Heal Canada represents patient interests to regulators and pricing authorities by translating lived patient experience into structured, evidence-based policy input that is directly relevant to health technology assessment (HTA) and reimbursement decision-making. This includes generating patient-reported outcomes (PROs), real-world evidence (RWE), and qualitative patient insight that articulate unmet needs, quality-of-life impact, treatment burden, access barriers, and real-world value beyond clinical endpoints.	Patient advocacy > Health activist	Evidence-based patient input > Conduct surveys/research to generate data	We do not communicate with patients directly	National	Sometimes	119044376594
We often advocate for the acceptance of new drugs to market, the inclusion of vision care products to provincial health coverages, and our members regularly participate in CDA [Canadian Drug Agency] surveys and sessions.	Visual impairment > Visual impairment	Evidence-based patient input > Conduct surveys/research to generate data	Do not know	National	Sometimes	119063928324
Representation, rights advocacy, and immigration support.	HIV > HIV and sexual health	Institutional governance > Ensure representation within governmental advisory bodies	100	National	Regularly	115032094015
We do regular submissions for HTA [Health Technology Assessment] and have active relationships with government decision-makers at many levels.	Gastrointestinal > Gastrointestinal: most types	Institutional governance > Ensure representation within governmental advisory bodies	100,000	National	Regularly	119037340441
... been invited to national roundtables by governments and also by pharma, etc.	Older people > Older people	Institutional governance > Ensure representation within governmental advisory bodies	10,000	National	Regularly	119044669631
I was a member of the PMRB [Patented Medicine Prices Review Board] representing the patient perspective.	Cancer > Cancer: blood	Institutional governance > Ensure representation within governmental advisory bodies	5,000	National	Regularly	119068939499
There are not many new treatments for rare cancers, but when a new treatment or class is introduced, We act as Canada's advocacy group on behalf of sarcoma cancer patientsw	Cancer > Cancer: sarcoma	Institutional governance > Ensure representation within governmental advisory bodies	5,000	National	Regularly	119078449674
Advocacy alongside industry partners for new therapy market entry to Canada, approvals, and access.	Neurological > Epilepsy	Institutional governance > Working effectively within multi-stakeholder networks	We do not communicate with patients directly	National	Regularly	119045277128
Representation, rights advocacy, and immigration support.	HIV > HIV and sexual health	Upholding patient rights/improving quality of life > Protecting/improving the patient experience	100	National	Regularly	115032094015
We are a peer-led organization that advocates for one another on patients' rights, on care and treatment.	HIV > HIV	Upholding patient rights/improving quality of life > Protecting/improving the patient experience	1,000	Local	Regularly	119045557717

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