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

Patient group goals

The percentages below highlight how the 6 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

9 mentions

2 mentions

1 mention

actions & advocacy

How patient groups get access to medicines

Find out what the goals mean

5 mentions

3 mentions

1 mention

English text	Therapy area	Category	Patients reached	Geo reach	Regulatory engagement	Respondent
European Medicines Agency - Eligible Group Status - COMP [Committee for Orphan Medicinal Products] - SAWP [Scientific Advice Working Party].	Respiratory > Pulmonary fibrosis	Regulatory partnership > Working with regulatory bodies	Not specified	International	Rarely	119039359117
When new drugs are approved by the EU medicines agency, we work to represent patient interest with the health service and government agency responsible for approving the drug in Ireland and regulating pricing of new drugs.	Respiratory > Interstitial Lung Diseases (ILDs)	Regulatory partnership > Working with regulatory bodies	5,000	National	Sometimes	119044171823
Submission on Lutathera for reimbursement decision.	Cancer > Cancer: neuroendocrine (NET)	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	1,000	National	Rarely	119039308095
We share the patient experience of living with a condition as part of the reimbursement process.	Neuromuscular > Neuromuscular diseases: most types	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	1,000	National	Sometimes	119047368493
We submitted our support to the NCPE [National Centre for Pharmacoeconomics] for their appraisal of Lutathera [used to treat adults with certain unresectable or metastatic gastroenteropancreatic neuroendocrine tumors].	Cancer > Cancer: neuroendocrine (NET)	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	100	National	Rarely	119051190597
Drugs for ataxia are very rare, so we only make submissions as they become available.	Neurodegenerative > Ataxia	Regulatory partnership > Contribute to Marketing Authorisation submissions	1,000	National	Rarely	119020208311
European Medicines Agency - Eligible Group Status - COMP [Committee for Orphan Medicinal Products] - SAWP [Scientific Advice Working Party].	Respiratory > Pulmonary fibrosis	Regulatory partnership > Attend/facilitate meetings with policymakers/regulators	Not specified	International	Rarely	119039359117
Meetings with Government Representatives and Department of Health regarding the availability of certain DMTs [Disease-Modifying Therapies primarily used for multiple sclerosis and various autoimmune conditions (like rheumatoid arthritis)].	Neurological > Multiple sclerosis	Regulatory partnership > Attend/facilitate meetings with policymakers/regulators	10,000	National	Regularly	119074666617
National organization is affiliated with European groups which attempt to have influence.	General health > Health literacy	Regulatory partnership > With other healthcare advocates	100	National	Rarely	119052876993
Advocacy/public affairs messaging about improving reimbursement decision-making for drugs in Ireland.	Cancer > Cancer: most types	Impacting policy and legislation > Influence healthcare policy and legislation	10,000	National	Rarely	119063937918
We have advocated for our members to our government representatives at yearly events where we have been invited to government buildings to present to an invited group.	Patient advocacy > Health activist	Impacting policy and legislation > Participate in public hearings and consultations	5,000	National	Rarely	119047297038
We have advocated for our members to our government representatives at yearly events where we have been invited to government buildings to present to an invited group.	Patient advocacy > Health activist	Impacting policy and legislation > Mobilise parliamentarians and political leaders	5,000	National	Rarely	119047297038
We advocate for the most efficient medicine to be available and reimbursed for heart failure patients.	Heart > Heart failure	Impacting policy and legislation > Addressing barriers/anomalies in medical care	5,000	National	Sometimes	119051411038
When new drugs are approved by the EU medicines agency, we work to represent patient interest with the health service and government agency responsible for approving the drug in Ireland and regulating pricing of new drugs.	Respiratory > Interstitial Lung Diseases (ILDs)	Pricing and affordability advocacy > Engage in price-review board negotiations	5,000	National	Sometimes	119044171823
Advocacy/public affairs messaging about improving reimbursement decision-making for drugs in Ireland.	Cancer > Cancer: most types	Pricing and affordability advocacy > Advocating for inclusion of product in reimbursement lists/national formularies	10,000	National	Rarely	119063937918
Equity of access: Public patients can wait a lot longer for access to meds approved by EMA [European Medicines Agency], versus private patients whose insurance companies reimburse.	Patient advocacy > Health activist	Improving access pathways > Facilitate equitable access to medicines/healthcare	1,000	National	Sometimes	119044976833
We advocate for the most efficient medicine to be available and reimbursed for heart failure patients.	Heart > Heart failure	Improving access pathways > Facilitate equitable access to medicines/healthcare	5,000	National	Sometimes	119051411038
Meetings with Government Representatives and Department of Health regarding the availability of certain DMTs [Disease-Modifying Therapies primarily used for multiple sclerosis and various autoimmune conditions (like rheumatoid arthritis)].	Neurological > Multiple sclerosis	Improving access pathways > Facilitate equitable access to medicines/healthcare	10,000	National	Regularly	119074666617
Equity of access: Public patients can wait a lot longer for access to meds approved by EMA [European Medicines Agency], versus private patients whose insurance companies reimburse.	Patient advocacy > Health activist	Improving access pathways > Address disparities in access and management	1,000	National	Sometimes	119044976833
Drugs for ataxia are very rare, so we only make submissions as they become available.	Neurodegenerative > Ataxia	Improving access pathways > Improving access to rare/ultra-rare therapies	1,000	National	Rarely	119020208311
During the course of projects based on issues experienced by the community.	Gastrointestinal > IBD	Evidence-based patient input > Leverage patient stories and lived-experience narratives	5,000	National	Sometimes	119020296590
We share the patient experience of living with a condition as part of the reimbursement process.	Neuromuscular > Neuromuscular diseases: most types	Evidence-based patient input > Leverage patient stories and lived-experience narratives	1,000	National	Sometimes	119047368493

Ireland

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How patient groups interact with drug regulators

How patient groups get access to medicines

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