About the Campaign
The Campaign for Patient Access was launched by the American College of Cardiology in December 2009 as a national effort to reverse Medicare physician fee schedule cuts that threatened cardiovascular care. The site provided background on the issue, the ACC's legislative and legal response, resources for patients and practices, a newsroom tracking coverage across the country, and ways for supporters to share their stories and support the campaign.
From the Newsroom
Medicare Meltdown: Access to Health Care in "Critical Condition"
A press release warning that cardiology access was in critical condition due to Medicare payment cuts.
Read more
Cardiology Takes Legal Action Against Medicare
The ACC filed suit against HHS Secretary Kathleen Sebelius over the 2010 Physician Fee Schedule.
Read more
ACC Statement on Health Care Reform
The ACC used the State of the Union address to highlight the need to reverse the Medicare cuts.
Read more
Medicare Patients and Physicians Join Petition Drive
Patients and physicians in Washington, DC joined a petition drive calling on Congress for Medicare reform.
Read moreEffect of cuts on access to cardiac genetic risk assessment programs
Australia has long been recognised for world-class cardiovascular care, with cardiac genetic risk assessment playing an increasingly vital role in identifying inherited conditions such as familial hypercholesterolaemia, hypertrophic cardiomyopathy and long QT syndrome. Recent reductions in Medicare physician fee schedules are now rippling through specialist clinics, narrowing the window for early intervention in families with a known history of sudden cardiac death.
For Australians carrying inherited cardiac risk, the stakes extend well beyond individual diagnosis. A genetic finding in one patient often triggers cascade screening for parents, siblings and children. When funding models undermine the viability of these programs, the consequences unfold across generations, particularly in regional and remote communities where alternative services are scarce.
What cardiac genetic risk assessment involves in Australia
Cardiac genetic risk assessment combines clinical evaluation, family history analysis and targeted DNA testing to identify individuals at elevated risk of inherited heart conditions. In Australia, these programs typically operate out of tertiary cardiac genetics clinics, often embedded within larger cardiology services at hospitals such as Royal Melbourne, Royal Prince Alfred in Sydney and the Royal Adelaide.
A standard pathway involves referral from a GP or treating cardiologist, followed by specialist consultation, genetic counselling and, where appropriate, laboratory testing. Results inform surveillance schedules, medication choices and family screening recommendations. For conditions such as familial hypercholesterolaemia, early identification can prevent premature coronary events through timely statin therapy and lifestyle intervention.
Australia's National Health and Medical Research Council and the Cardiac Society of Australia and New Zealand have published guidelines endorsing broad access to genetic assessment for at-risk families. Yet the delivery infrastructure has always been thin, relying on a small number of clinicians trained across both cardiology and clinical genetics.
How Medicare fee schedule cuts reshape reimbursement
The Medicare Benefits Schedule determines the rebates paid for specialist consultations and procedural items, including the complex diagnostic and counselling work involved in cardiac genetic assessment. When fee schedule cuts are applied, the rebate per consultation falls below the true cost of delivering the service in many practice settings.
Cardiac genetics consultations are time-intensive. A new patient assessment can run 60 to 90 minutes, encompassing three-generation family history, physical examination, risk stratification and detailed consent discussions for genetic testing. Subsequent reviews and family member consultations, while shorter, still demand significant clinician time and administrative coordination with pathology laboratories.
Once rebates are reduced, practices face a difficult choice: absorb the shortfall, pass it on to patients as out-of-pocket costs, or reduce appointment availability. Each option has flow-on effects for access, particularly for pensioners, families on lower incomes and patients in areas where private cardiology dominates the service landscape.
Patient access barriers emerging across the country
The first signs of access pressure typically appear in waiting lists. Several Australian cardiac genetics clinics have reported growing referral backlogs as practices reduce throughput to manage reduced reimbursement. Patients who would previously have been seen within six to eight weeks may now wait several months for an initial appointment.
Out-of-pocket costs are another emerging barrier. While bulk-billing remains the cultural expectation in many parts of Australia, the gap between Medicare rebate and the actual cost of providing specialist cardiac genetic services has widened. Patients in outer metropolitan suburbs and regional centres may find themselves quoted fees they had not budgeted for, leading some to defer assessment.
Language and cultural factors compound the issue. Australia's multicultural population means genetic counselling often requires interpreter services and culturally responsive communication. When funding pressures force clinics to shorten consultation times, the quality of that communication can deteriorate, undermining informed consent and family engagement with the screening process.
Rural and remote service gaps widening
Outside the capital cities, access to cardiac genetic risk assessment has always been more limited. Fly-in, fly-out specialist services and visiting outreach clinics help bridge the gap, but they depend on sustainable reimbursement to remain viable. Reduced Medicare rebates threaten to make these outreach models uneconomic.
In Western Australia, Queensland and the Northern Territory, patients may already travel hundreds of kilometres to reach the nearest cardiac genetics service. Telehealth has improved initial consultation access, but specimen collection, physical examination and family cascade screening still require in-person attendance. When local services close or scale back, the burden of travel falls on patients and their families.
Aboriginal and Torres Strait Islander communities face additional layers of disadvantage. The Heart Foundation has documented higher rates of cardiovascular disease among Indigenous Australians, alongside historical mistrust of medical institutions. Genetic risk assessment programs that are properly resourced can build trust through community engagement, but underfunded models risk reinforcing existing inequities in care.
Workforce strain and clinical capacity losses
Cardiac genetics is a small subspecialty. Training pipelines in Australia are limited, and the workforce is concentrated in major teaching hospitals. When funding pressures erode the financial sustainability of these roles, junior clinicians may be discouraged from entering the field, compounding future shortages.
Senior clinicians report that the administrative burden of complex genetic cases is rising even as reimbursement falls. Documentation requirements, family tree construction, coordination with pathology laboratories and communication with multiple family members all consume time that is not adequately captured in current Medicare item numbers. The result is professional dissatisfaction and, in some cases, early retirement from specialist practice.
Nursing and genetic counsellor roles are equally exposed. These allied health professionals are essential to the smooth running of cardiac genetics programs, yet their positions are often among the first considered when budgets tighten. Losing these roles reduces clinic capacity and lengthens waiting lists further, creating a downward spiral in service quality.
Comparing service capacity before and after the cuts
The differences in service capacity are most visible when pre-cut and post-cut operating environments are placed side by side. Early indications from Australian clinic surveys and Medicare billing data point to a consistent pattern across most services.
| Dimension | Before fee schedule cuts | After fee schedule cuts |
|---|---|---|
| Average new patient waiting time | 6–8 weeks | 4–6 months |
| Bulk-billing availability for initial consult | Common in public and many private clinics | Reduced, with out-of-pocket gaps of $150–$300 |
| Outreach clinic frequency in regional areas | Quarterly visits to most regional centres | Postponed or cancelled in multiple states |
| Genetic counsellor positions per clinic | 1–2 full-time equivalent | Reduced to fractional or casual cover |
| Family cascade screening rate | 70–80% of at-risk relatives assessed | Estimated 40–50% as costs deter follow-up |
The trajectory is not uniform across every service, but the pattern is consistent enough to warrant concern from clinicians, patients and policy makers alike. Several cardiology leaders have warned that without intervention, the gap between urban and rural access will widen further over the next funding cycle.
Advocacy and policy options moving forward
Several practical responses are available to clinicians, patients and peak bodies who want to preserve access to cardiac genetic risk assessment. Engagement with federal members, submissions to Medicare Benefits Schedule reviews and public storytelling all play a role in shifting the policy environment.
Ways the cardiology community is responding to the funding challenge:
- Lodging detailed submissions to the Department of Health's MBS Review Advisory Committee
- Surveying patients and families about the impact of increased out-of-pocket costs
- Partnering with the Heart Foundation and the Cardiac Society of Australia and New Zealand on joint position statements
- Meeting with federal MPs and senators to brief them on local service impacts
- Documenting waiting list data to demonstrate unmet need across regions
Actions patients and families can take to support cardiac genetic services:
- Sharing their personal stories with local members of parliament
- Joining consumer reference groups linked to major cardiac genetics clinics
- Participating in consultations during MBS reviews and submitting individual feedback
- Supporting Heart Foundation advocacy campaigns through donations and fundraising
- Encouraging workplace giving programs to back cardiovascular research and service funding
- Asking their GP or cardiologist to write supporting letters when access difficulties arise
The Medicare fee schedule decisions being made now will shape the availability of cardiac genetic risk assessment for years to come. Australians with inherited heart conditions, their families and the clinicians who care for them have a clear stake in ensuring that policy makers understand what is at risk when reimbursement falls below the cost of providing high-quality care. Share your story, contact your local MP and join the campaign to protect fair funding for cardiac genetic services across Australia.
Campaign for Patient Access