Advocacy Atlas
31,871 individual submissions have reached the committee that decides which medicines Australia pays for.
Most Public Summary Documents since 2014 carry a section recording what patients, carers, clinicians and organisations told the PBAC. It is the only non-technical layer in the entire reimbursement record, and until now it was organised nowhere — not by who spoke, and not by what they spoke about. This is that register, built from 3,056 decisions since 2005.
Counted in the documents' own words. 1,161 decisions record consumer input; 579 state plainly that none was received. These are submissions rather than unique people — one campaign meeting two submissions at the same meeting is recorded against both.
The record got louder
The consumer comments facility barely registered before 2013. By 2024, four in five decisions carried something from a patient, a carer, a clinician or an organisation.
Participation broadened and thinned at the same time. Far more decisions now attract comment, but the typical number of people behind each one has fallen from about 30 to about 20 — the 2018 peak is a single campaign, not a trend.
View as a table
| Year | Decisions | With input | Share | Individuals | Per decision |
|---|---|---|---|---|---|
| 2011 | 87 | 0 | 0% | 0 | 0 |
| 2012 | 131 | 0 | 0% | 0 | 0 |
| 2013 | 98 | 5 | 5% | 61 | 12.2 |
| 2014 | 149 | 51 | 34% | 1,314 | 25.8 |
| 2015 | 194 | 72 | 37% | 2,183 | 30.3 |
| 2016 | 175 | 93 | 53% | 2,612 | 28.1 |
| 2017 | 174 | 81 | 47% | 2,911 | 35.9 |
| 2018 | 187 | 94 | 50% | 10,570 | 112.4 |
| 2019 | 198 | 91 | 46% | 2,757 | 30.3 |
| 2020 | 162 | 96 | 59% | 1,471 | 15.3 |
| 2021 | 161 | 109 | 68% | 1,032 | 9.5 |
| 2022 | 156 | 106 | 68% | 1,490 | 14.1 |
| 2023 | 144 | 112 | 78% | 944 | 8.4 |
| 2024 | 156 | 126 | 81% | 1,792 | 14.2 |
| 2025 | 156 | 121 | 78% | 2,615 | 21.6 |
When a lot of people write at once
The largest write-ins in the record are overwhelmingly rare disease, and mostly in children. Outcomes are mixed — a large campaign is not a decision.
| Medicine | Individuals | Year | Outcome |
|---|---|---|---|
| lumacaftor with ivacaftorTreatment of cystic fibrosis in patients aged 6–11 years who are homozygous for the… | 3,980 | 2018 | Recommended with restriction |
| lumacaftor with ivacaftorTreatment of cystic fibrosis in patients aged ≥12 years who are homozygous for the… | 3,980 | 2018 | Not recommended |
| nusinersenTreatment of infantile-onset (Type I) and childhood-onset (Types II and III) spinal… | 1,087 | 2017 | Not recommended |
| sapropterinTreatment of hyperphenylalaninaemia (HPA) caused by phenylketonuria (PKU) in… | 919 | 2018 | Deferred |
| lumacaftor with ivacaftorTreatment of cystic fibrosis in patients aged 12 years and older who are homozygous for… | 594 | 2016 | Not recommended |
| belzutifanTreatment of adult patients with von Hippel-Lindau (VHL) disease who require therapy for… | 516 | 2024 | Recommended with restriction |
| lumacaftor with ivacaftorTreatment of cystic fibrosis in patients aged 12 years and older who are homozygous for… | 507 | 2016 | Not recommended |
| eflornithinePost-maintenance treatment to prevent relapse in patients with high-risk neuroblastoma… | 485 | 2025 | Recommended with restriction |
Lumacaftor with ivacaftor appears twice because one campaign met two submissions at the same meeting — one for children aged 6–11, recommended, one for everyone 12 and over, not recommended. The same 3,980 people are recorded against both.
Being heard is not evenly distributed
Consumer input reaches roughly three-quarters of cancer and rare-disease decisions and about one in seven metabolic ones. Restricted to 2014 onward, where the section is reliably present in the document.
The era cut matters. On the full corpus, mental health appears to sit at 19% and cardiovascular at 28% — both artefacts of having more pre-2014 decisions, where the section often does not exist. In the modern era they are 44% and 58%. Metabolic is the one that holds.
The conditions nobody spoke for
Grouped by disease rather than by drug, using the classified indication for each submission, and cut at 2014 for the same reason as the chart above. The pattern the therapy-area view hides: it is not metabolic medicine broadly, it is the inherited metabolic disorders of childhood. All 882 classified conditions are browsable in the disease index, each with every medicine considered for it.
| Condition | Decisions | With input | Share |
|---|---|---|---|
| dry eye syndromeOphthalmology | 11 | 0 | 0% |
| tyrosinaemiaMetabolic | 10 | 0 | 0% |
| fat malabsorptionMetabolic | 8 | 0 | 0% |
| maple syrup urine diseaseMetabolic | 6 | 0 | 0% |
| inborn errors of protein metabolismMetabolic | 5 | 0 | 0% |
| chronic severe painPain | 5 | 0 | 0% |
The voices heard most often
| Organisation | Appearances | Drugs | Years | Speaks as |
|---|---|---|---|---|
| Rare Cancers Australia | 121 | 74 | 2014–2026 | patient organisation |
| Medical Oncology Group Australia | 109 | 52 | 2014–2025 | professional body |
| Lung Foundation Australia | 66 | 50 | 2015–2025 | patient organisation |
| Leukaemia Foundation | 47 | 29 | 2019–2025 | patient organisation |
| Colitis Australia | 31 | 14 | 2017–2025 | patient organisation |
| Breast Cancer Network Australia | 27 | 15 | 2016–2025 | patient organisation |
The second most frequent voice for patients in the Australian record is a clinicians' body, not a patient one.
The full atlas
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How this was built, and what it cannot tell you
The measurement is read directly from each document, with no model involved. The PBAC states all three signals plainly: whether comments were received, how many individuals, health professionals and organisations wrote, and which organisations they were. A model would add nothing there except a way to be wrong.
The grouping is a different matter and worth separating. Therapy area and the condition each submission was for are classified by a language model from the indication text, because the documents do not carry either as a field. So the counts on this page are the document's own; the buckets they are sorted into are an interpretation, and an individual condition label can be wrong. That is why the conditions are browsable one by one rather than only in aggregate.
Three limits worth stating. 35% of decisions have no recoverable consumer-comments section, overwhelmingly before 2014, which is why both the therapy-area and condition views are cut at that year. Read across the whole corpus instead, the quietest conditions come back as hypertension, postmenopausal osteoporosis and major depression, none of which are silent: their decisions simply pre-date the facility. And silence in this register means no comment reached the committee through the consumer facility — not that no one cared, and not that nobody was affected.
People are counted here, never quoted. Organisations are public actors making public submissions and are named; individual accounts of illness stay in the documents they were written for.