Wednesday, July 26, 2017

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OVERVIEW

The Pulmonary Hypertension Society of Australia and New Zealand is a ‘Not for Profit’ organisation with a mandate to advocate for a sustainable ‘model of care’ with equitable access to skilled clinicians that allows timely diagnosis, treatment and ongoing management for patients with Pulmonary Hypertension in Australia and New Zealand.

Pulmonary Hypertension is a relatively rare disease considered to be present in between 15 – 55 patients per million people of the general population in its rarest form of Pulmonary Arterial Hypertension (PAH). This has substantively increased from historical data suggesting only 1-2 patients per million in the general population. Pulmonary Hypertension is however more of an ‘umbrella’ disease encompassing more common forms of associated Pulmonary Hypertension affecting much larger numbers of patients. Recent Australian data suggests that pulmonary hypertension, in all its forms, may affect up to 5,000 people per million or 500 in every 100,000 people in Australia. The primary symptom in patients presenting to primary care is ‘shortness of breath’ (SOB). SOB is a universal symptom which may reflect any number of more common underlying diseases, e.g. Asthma, Congestive Cardiac Failure, Coronary Heart Disease, Chronic Lung Diseases, Anaemia and many more making the diagnosis of the much more rare disease of PAH difficult.

Pulmonary Hypertension, in its rarest form of PAH has been revolutionised in recent years with PAH specific medications that have significantly improved Survival and QoL. Yet, a recent Australian study has shown that a significant delay remains even in this well defined and largely treatable population. The average definitive diagnosis of iPAH is made 3.85 years after initial symptom onset, as described by patients themselves.

Centres of ‘excellence’ have been established to service this growing phenomenon within Australia and New Zealand over the past 6 years. The criterion for centre establishment was based on the ability to have access to tests mandated by regulatory bodies.  These centres do not always have the resources, personnel, adequate clinic time, nor the infrastructure to provide the optimal service to patients with PHT.

PHT is a disease that has fallen through the cracks of the major specialities in Australian and New Zealand Specialist training programs. No specific training exists in either cardiology or respiratory medicine advance trainee programs (TSANZ and CSANZ standards).

The Pulmonary Hypertension Society of Australia and New Zealand has therefore been established and specific areas of need have been identified.

There are four major areas needed to be addressed in order to achieve the above mandate of the society.

Our focus for Advancement!

1.       Workforce sustainability. Sustainable models of care require specialist PH physicians with a passion for this area of medicine. Ensuring that there is a network of research opportunities, and an education platform that meets the training needs of physicians with an interest in PH will work some way toward a standardised ‘model of care’ encouraging young physicians to become interested in pursuing a career involving PH.

2.       Ongoing PH education. Timely access to skilled physicians requires more specialists with in depth knowledge and expertise in the diagnostic challenges and ongoing management nuances that present in PH patients, as with any chronic and complex disease. The PH Soc ANZ will work with the ANZ community to expand the knowledge base of PH and the complexities of diagnosis and management of this group of patients. We intend to expand the reach into Cardiology; Respiratory medicine, Immunology, Rheumatology, Intensivists, Anaesthetist, Cardiac Surgeons and the advances trainees and allied health that accompany each speciality.

3.       Collaborative research.  To continue to advance our knowledge and expertise requires ongoing research. The society plans to set up a National PH Registry (NPHR) that covers the diverse associated aetiologies of PH. The registry will provide a platform for research and improve our understanding of all forms of PH.

4.       Lobbying power. By coming together the society hopes to create a force that will have levels of influence on many facets of PH management in Australia and New Zealand. We would hope to represent clinicians and allied health professionals to Government and others (e.g RACP) to be of assistance in policy reviews effecting PH management and treatment. Such items may include a PBS funded combination therapy in the future. We will work with the Pharmaceutical industry and government to promote the achievement of our goals.

Copyright 2011 by PHSANZ