Advocacy: Spread The Word And Help Raise Awareness


For far too long, POTS has remained in the shadows, leaving individuals affected by this syndrome with insufficient access to proper diagnosis and care.

At the Australian POTS Foundation, we aim to lead coordinated advocacy efforts to ensure better recognition and increased access to government-funded care for all Australians living with this condition.

Stay tuned for updates on how you can join us in advocating
for POTS awareness and support across Australia. Together, we can make a difference.


POTS Advocacy

Every time you send an email, if you have one of our email signatures in use, your recipients will learn something about POTS and your experience of living with POTS.

The text and images we supply here can be copied and pasted into your email signature settings in most email software or systems.

25% Of People

Text: 25% of people with POTS are so disabled by the condition they are unable to attend work or study. Find out more at potsfoundation.org.au

Australian POTS Foundation email signature | 25% Of People

Long Covid

Text: POTS is highly prevalent in people with Long Covid. Find out more at potsfoundation.org.au

Australian POTS Foundation email signature | Long Covid

Living With POTS

Text: I am living with POTS so pacing and balance are very important to me. Please be aware it may take me a few days to reply to you. Thank you

Australian POTS Foundation email signature | Living With POTS

Dysautonomia

Text: Did you know POTS is the most common form of Dysautonomia? Find out more at potsfoundation.org.au

Australian POTS Foundation email signature | Dysautonomia

Please consider contacting your MP and asking them to ‘pledge’ to work towards access for appropriate diagnosis, treatment and care through the public health system for those with dysautonomia. Carers and family members may join you in this campaign.

You can find you local MP be searching with your postcode on this link:

https://www.aph.gov.au/Senators_and_Members

Key points for your email

These key points are to help you write your own email. There is a template email below if it is easier for you to copy and paste the text.

  • Please show your support for people with dysautonomia by supporting our request for pledges from MP’s and our state and national health ministers to improve the care and health services for this community.
  • Dysautonomia has multiple sub-types the most common being postural orthostatic tachycardia syndrome (POTS). POTS is a profoundly debilitating condition affecting predominantly women of child-bearing age. Prevalence in Australia is currently unknown due to the absence of an ICD code for tracking illness, but international estimates suggest up to 1/100 young women may experience POTS in their lifetime.
  • Add a few sentences explaining your experience of POTS. Focus on how it has limited your ability to work/study/socialise and briefly describe the lack of access to assistance you have encountered through the health system.
  • There are no TGA approved medications for dysautonomia in Australia.  Currently, the two most common, and highly prescribed medications by specialists, are not available on the PBS and are prohibitively expensive for many.  This creates a vast inequity of access to appropriate management of the condition.
  • Those with POTS are advocating for equity of access to diagnosis, treatment, and care through the Australian public health system to improve their quality of life and their ability to reengage in their communities. 
  • The pledge we are asking you to sign is “Everyone in Australia with dysautonomia should have access to public autonomic specialist services for an initial assessment, subsidised medication and ongoing therapy and support as required.”

Note: Remember to include your full name and address in the email. Including your address is how your MP knows that you are in their constituency.

Template email

Dear [Insert MP Name],

 

As your constituent, I am writing to inform you of my experiences as a person living with postural orthostatic tachycardia syndrome (POTS) in Australia. POTS is a profoundly debilitating condition of the autonomic nervous system which mostly affects women of childbearing age (although all ages and sexes may be affected).

The condition results in significant reduction in quality of life and high unemployment.  In Australia the average diagnostic delay is 6.9 years, this delay often escalates functional decline and psychological stress.  Australian research has shown that quality of life in those with POTS is worse than most other major chronic illnesses including heart and kidney disease.  

[Add your personal story/connection with pots and a description of your experiences with the health system here. Keep your story brief and give brief examples of the financial, emotional and physical impact POTS has had on you and your loved ones.]

Research also demonstrates that POTS is the most common ‘phenotype’ of Long COVID with over 70% of these patients meeting the diagnostic criteria for POTS. A recent publication in “Heart Lung and Circulation” journal also pointed to the escalating burden of POTS after COVID infection in Australia with an estimated >300 000 thousand people likely affected by the condition.

Despite this, Australia has done little to alleviate the burden of post COVID POTS.  I would call on you to raise the following issues with relevant government and health bodies and seek a commitment from them to provide:

  • Research Funding: The Australian government has never allocated funding to POTS research. It is imperative that researchers are incentivised and supported financially to explore and understand the mechanisms and treatments of this condition.
  • Funding for treatment: None of the primary treatment regimes for POTS [medical grade compression, high dose salt, medication including Ivabradine and Midodrine] are approved by the TGA or funded by the PBS which creates treatment inequity and financial hardship for sufferers. 
  • Affordable medications for POTS: Currently there are no TGA approved medications for POTS.  Two of the most frequently prescribed medications, Midodrine and Ivabradine, are prescribed ‘off-script’ increasing the financial burden for those who can least afford these expensive medications. 
  • Financial support for consumer bodies: Currently the only registered charity supporting those with POTS is the Australian POTS Foundation. This organisation relies on volunteers and community members to fund and develop important health resources and education. 
  • Funding for clinician education: A vast gap in medical knowledge exists in both primary and secondary care leaving sufferers with little in the way of adequate access to diagnosis and treatment. Investment in clinical education and upskilling of the workforce is imperative to reducing unnecessary diagnostic delays.

I would be grateful if you could let me know what steps you have taken to support these issues.

I look forward to your response.

Yours sincerely,

[Add your full name and address]

For more information on POTS, click HERE.

Along with the Australian Dysautonomia and Arrhythimia Research Collaborative (Universtiy of Adelaide), we have made a submission to the Australian Parliamentary Inquiry into Long COVID and Repeated COVID Infections.

This submission outlines numerous recommendations including:

  • An urgent call for upskilling of allied health and medical practitioners in understanding of assessment and treatment of autonomic dysfunction
  • Reviews of MBS, PBS, NDIS and DSP guidelines to increase accessibility for patients with POTS/Long-COVID
  • Increased research funding, specifically to understand economic burden of disease

The full submission can be accessed via the below link, listed as item #167.

https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Aged_Care_and_Sport/LongandrepeatedCOVID/Submissions

We’re stepping up to raise awareness and funds for POTS. The diagnostic criteria for POTS includes a rise of 30 beats per minute (bpm) in heart rate upon standing. So, we’re taking the power of 30 bpm and turning it into a force for good!

For more information, including a ‘How to’ guide, please click here.

Help Us Achieve Our Mission

There are many ways you can help our work towards creating a brighter future for those living with POTS, through advocacy, support and research. This page is your best starting point for finding a way (or ways) that you can join our mission.

Make A Difference By Volunteering

We are a volunteer-based organisation.  If you have a vision to spread the word about POTS in Australia then ‘jump on board’.  We would love to hear from you if you have the skills to help us with:

  • Fundraising activities
  • Media and marketing
  • Administration
  • POTS Research
  • Development of educational material
  • Medical advocacy

To explore options, click the button below to visit our contact page.

Contribute Financially To Help People Living With POTS

The Australian POTS Foundation is a registered charity committed to improving support, education and research for those living with POTS.  We are reliant on the generosity of those in the community who wish to partner with us financially to see our mission realised. If you would like to support us in this endeavour then please consider giving financially by clicking on the ‘donate’ button below.  Even the smallest amount will help to build a better future for those with POTS in Australia.  Your contributions will be used to:

  • Develop POTS educational material for the general public, clinicians, patients and their carers
  • Run patient and clinician education sessions and support medical research into POTS
  • Provide PhD ‘top-up’ scholarships in order to attract Australia’s best young minds into the field of POTS research
  • Fund community engagement activities that benefit those with POTS in Australia
  • Provide advocacy for better recognition and provision of POTS treatment in Australia

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