Glossary
Explore the full definitions and explanation of the goals
actions & advocacy
How patient groups get access to medicines
Influence healthcare policy and legislation
Organisations campaign to shape health policy through petitions, position statements, ministerial engagement and lobbying. Efforts span narrowly targeted reforms through to broad representation of patient interests before ministries and parliaments.
Mobilise parliamentarians and political leaders
Advocates engage directly with parliamentarians, ministers and parliamentary health groups — through hearings, budget submissions and face-to-face meetings — to win political backing. Sustained political mobilisation is repeatedly credited with delivering concrete policy change.
Advocate for patient protection bills and rights
Organisations pursue dedicated legislation to protect patients' rights. Where formal legislative routes stall, some turn to constitutional and legal mechanisms to defend fundamental rights.
Addressing barriers/anomalies in medical care
Advocates identify and challenge specific inequities and gaps in care, such as treatments approved or reimbursed for some patient groups but not others. They press authorities to correct these anomalies and extend access where clinical need is otherwise unmet.
Advocate for fair medicine pricing
Organisations campaign for affordable, well-reimbursed medicines, raising pricing and out-of-pocket costs with parliaments, insurers and manufacturers. Activity ranges from formal advocacy submissions and reimbursement calls to public and media campaigns highlighting the burden of high drug costs.
Call for reduced selling prices from manufacturers
Some organisations appeal or negotiate directly with pharmaceutical companies to lower prices. Others escalate to pricing alliances and procurement bodies when costs remain out of reach.
Address cost barriers for low-income and vulnerable people
Advocates work to remove financial barriers for those least able to pay, supporting assistance and discount schemes. Efforts focus on low-income patients, welfare recipients and marginalised communities facing prohibitive out-of-pocket costs.
Tracking and monitoring drug pricing/drug shortages
Groups actively monitor prices, availability and shortages, alerting regulators and mobilising their communities when supplies fail. Activity includes civic oversight of pricing compliance, position statements on specific shortages, and engagement with authorities and manufacturers to secure continuity of supply.
Monitoring product substitution
Organisations watch for unilateral substitutions — such as biologic-to-biosimilar switches or altered prescriptions — that may disadvantage patients, and intervene to protect appropriate treatment. Several advocate for legislation requiring explicit prescriber consent before substitution.
Advocating for inclusion of product in reimbursement lists/national formularies
A major focus is getting specific medicines and devices added to reimbursement lists and national formularies. Groups submit applications, complete reimbursement questionnaires and advocate at both regional and national level.
Engaging in awareness campaigns
Organisations run public awareness and prevention campaigns — through media, events and dedicated awareness days — to build understanding and support for their cause. These efforts often accompany calls for better access and encourage public participation in consultations.
Facilitate equitable access to medicines/healthcare
This broad, high-volume activity centres on ensuring patients can actually obtain the treatments, tests and services they need. Groups advocate on availability, guide families through access routes, join procurement processes and press for consistent, nationwide provision of appropriate therapy.
Advocate for wider vaccine access
Organisations campaign to expand vaccine access and funding through consumer comments, awareness activity and price-review interventions. Vaccination and equitable access are recurring priorities, often pursued alongside partner networks.
Address disparities in access and management
Advocates highlight and act on regional, socioeconomic and system-level inequities — such as differences in waiting times, or treatments available in one area but not another. They press states and agencies to close these gaps and standardise access.
Improving access to rare/ultra-rare therapies
Given the prohibitive cost of orphan drugs, groups focus specifically on securing access to rare-disease therapies through early-access and compassionate-use programmes and dedicated rare-disease commissions and laws. Cross-border alliances and national rare-disease committees are central to this work.
Conduct surveys/research to generate data
Organisations run surveys, interviews and research studies to build an evidence base on patient needs, which they share with policymakers and regulators. Instruments range from structured questionnaires to patient-focused research collaborations.
Ensure safe and effective medicine use
Advocates engage on medicine safety, quality and appropriate use — raising adverse-event concerns, contributing to pharmacovigilance committees and challenging withdrawals or substandard products. This embeds the patient perspective in safety policy.
Support screening and early detection
Advocates campaign for screening and early-detection programmes, including newborn screening and multi-condition early detection. They provide expertise to funding and regulatory bodies on adding conditions to screening panels.
Protecting/improving the patient experience
Advocates defend and improve the patient experience beyond the clinic — across employment, disability support, discrimination and social inclusion — and provide social and legal guidance. They help patients assert their rights and resolve barriers with insurers and authorities.
Support in treatment-related legal actions
Some organisations pursue or support legal action to secure access to treatment, including constitutional and administrative proceedings and litigation for approved therapies. This judicial route is used to compel coverage of high-cost medicines where other channels fall short.
Promoting an emphasis on quality of life
Groups advocate for quality of life and quality of care as ends in themselves — spanning palliative care, accessibility and broader wellbeing. Their input keeps unmet needs and lived quality of life on the agenda alongside clinical and cost considerations.