COVID-19 Vaccination Rollout Information for Carers: What You Need to Know

Rare Voices Australia (RVA) attended the COVID-19 response update for carers webinar on 23 March 2021. The webinar was hosted by Professor Michael Kidd AM, Deputy Chief Medical Officer, Department of Health. Speakers included Liz Callaghan, CEO, Carers Australia; Luke Mansfield, Group Manager, Department of Social Services; and Bridget Carrick, Director, Vaccine Taskforce, Department of Health.

Below, RVA has put together a summary of the information presented during the webinar.

Snapshot update:

  • Phase 1b of the COVID-19 vaccination rollout has commenced in Australia.
  • Both vaccines that have been approved in Australia by the Therapeutic Goods Administration (the Pfizer and AstraZenica vaccines) will require two doses.
  • The second dose of the AstraZenica vaccine is given 12 weeks after the first dose.
  • The second dose of the Pfizer vaccine is given three weeks after the first dose.
  • The first dose of each vaccine provides a degree of protection, the second dose provides a sustained degree of protection.
  • Vaccinations are free for everyone living in Australia, as are appointments to receive the vaccination.
  • It is not mandatory in Australia to be vaccinated against COVID-19.
  • No vaccine is available for children at this stage.

What is the definition of a carer?

Under the Australian Government Carer Recognition Act 2010, a carer is someone who gives care and support to a relative or friend who:

  • Has a disability.
  • Has a mental health problem.
  • Has a medical problem (including an ongoing problem or an illness that will end in death).
  • Is frail because they are elderly (known as ‘frail aged’).

You can read more about carers here.

How to check if you are eligible to receive the COVID-19 vaccine:

Carers may be eligible to register for the COVID-19 vaccine as the Federal Government commences Phase 1b of the vaccine rollout if they care for:

  • A person with a specified underlying medical condition who is eligible under Phase 1b.
  • A child with a specified underlying medical condition.
  • A resident of an aged care facility or residential disability accommodation who was eligible under Phase 1a.
  • A person 70 years and over who is eligible under Phase 1b.

Step #1:

Check your eligibility. Use the Government’s Vaccine Eligibility Tracker tool.

You can also see which specific underlying medical conditions are included as part of Phase 1b, via this document (go to page 10).

Step #2:

If you are eligible to receive the vaccination as part of Phase 1b, book your appointment via the Vaccine Eligibility Tracker.

If you are unable to find a location that is administering the COVID-19 vaccine close enough to your location, check the Tracker again in a few weeks as more locations will be added shortly.

Step #3:

Note that eligible carers will be required to provide carer documentation or alternatively, to complete an Eligibility Declaration Form and take it with them when getting the vaccine.

In terms of carer documentation, each state and territory will differ in terms of what is considered adequate documentation. Reach out to Carer Gateway if you need assistance with this.

Who to reach out to if you need further assistance:

Carer Gateway is available to assist carers. Reach out to them on 1800 422 737 for assistance with your unique situation.

Will a record of my vaccination be stored?

Yes, your records will be stored in the Australian Immunisation Register (AIR), which you can access at any time via the myGov website. Clinical records will also be stored.

If you do not have access to the internet:

Call Healthdirect Australia: 1800 022 222

If English is not your first language:

The Department of Health has translated a number of COVID-19 information resources that are available on their website.

Survey: Inform WA Health Department About Support Required by Rare Disease Community Groups

In Western Australia, hundreds of peer support groups and other Non Governmental Organisations (NGOs) provide crucial support for those living with rare, genetic, and undiagnosed conditions. During the COVID-19 pandemic, this cohort/sector has been recognised by the State Government as being amongst the most vulnerable in the community. 

As such, the WA Department of Health (Office of Population Health Genomics) has engaged ConnectGroups to develop a 25-30 minute online survey. Click here to view the flyer.

Who is eligible to complete the survey?

Leaders of any peer support group or NGO that supports Western Australians living with a rare, genetic or undiagnosed condition. 

WA Department of Health’s goal in commissioning this survey:

To foster the long-term sustainability of these groups by identifying and addressing current gaps in service delivery.

Who is conducting the survey:

ConnectGroups is the peak body for peer support in WA, and is the voice of over 690 groups across the state for mental health, chronic and genetic conditions, social isolation and other life adversities. Click here to learn more about ConnectGroups.

ConnectGroups is looking to hear directly from rare disease NGOs and peer support groups who have members in WA and can provide valuable insights into the ongoing training, funding and support that is needed in this sector. To achieve the intended outcomes, we invite leaders to complete this 25-30 minute survey by 23 March 2021.

The survey covers the following areas:  

1.       How your support group/organisation operates.  

2.       What services your support group/organisation provides.  

3.       What assistance your support group/organisation requires to continue to deliver these services. 

All questions require a response for the survey to be submitted. ConnectGroups encourages respondents to make use of the ‘N/A’, ‘I don’t know’, and ‘Other’ options if they are unable to respond. For questions that require a number to be entered, please enter ‘000’ if you do not want to respond.  

ConnectGroups would like to thank you for participating in this sector consultation. Your response will be highly valuable in providing a clear and complete image of the NGO sector in WA and of the way forward.  

Take the survey here.

If you have any questions about the survey or if you’d like to undertake a phone survey, contact ConnectGroups by phone: 08 9364 6909.

RVA’s Rare Disease Day Media Summary

A big thank you to everyone who played a role in helping to generate awareness for 2021 Rare Disease Day. Below, we have included a summary of media generated that RVA was involved in securing and/or were featured in.

Sunday Extra – ABC Radio National | Radio

Aired on Sunday (28 February) morning, this segment featured clinical geneticist, Dr Lisa Ewans who is a member of RVA’s Scientific & Medical Advisory Committee, as well as Sean Murray, the CEO and a founding director of RVA Partner, Mito Foundation, and Christine Lowe, President of RVA Partner, Myositis Association of Australia Inc.

Listen to the Sunday Extra segment on the ABC Listen app or your favourite podcast app. We’ve listed the Apple Podcasts and Google Podcasts links below.

Apple Podcasts (go to the 2hrs 33 min mark)

Google Podcasts (go to the 2hrs 33 min mark)

SBS news | TV and online

Aired on Sunday (28 February), this story featured Monty, an eight-year-old boy living with pontocerebellar hypoplasia. The story also included commentary from RVA’s CEO, Nicole Millis.

You can watch the TV segment that aired on SBS On Demand (available until 7 March). Go to the 29th minute mark on this link to watch the story.

An online article accompanied the TV story.

2GB (NSW) | Radio

Nicole Millis was interviewed about whole-genome sequencing in a package that aired on Sunday (28 February). Click here to listen to the clip.

This interview was syndicated across 4BC, 2CC, 5AA and 4BC.

Newscorp | Online

This story ran online on 26 February and was widely syndicated across four states. The reporter explores the story of families from three RVA Partner organisations: SCN2A Australia, Rare Find Foundation and ausEE Inc. The article also features Angelina and her family’s story – Angelina was part of the global Rare Disease Day campaign. Nicole Millis provides commentary. Click here to read the article.

The Advocate | Online

Three articles ran in The Advocate ahead of Rare Disease Day:

Damian’s story – Damian is a member of RVA Partner, Myositis Association of Australia Inc.

Angelina’s story – Angelina was part of the global Rare Disease Day campaign.

Tim’s story – Between 12 August 2020 and 28 February 2021 (Rare Disease Day), Tim ran 100km in 200 days to raise awareness for rare diseases. All funds raised were donated to RVA.

Source Kids Magazine | Online

A story will run in Source Kids’ Autumn issue, featuring commentary from Nicole Millis. We will share the article as soon as it’s available.

2021 Rare Disease Day Media Pack

Rare Disease Day will be marked on Sunday 28 February. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives.

A number of landmarks around Australia will be illuminated to mark Rare Disease Day (click here to see the full list).

Rare Voices Australia (RVA) has put together a Media Pack for any media activity you or your organisation would like to engage in ahead of Rare Disease Day.

Click here to access the media release template [Word].

Click here to download a one-pager with more information about rare diseases, Rare Disease Day and RVA [PDF].

You can also direct any media looking for more information about rare diseases here. All Rare Disease Day assets can be downloaded from the official Rare Disease Day website.

RVA Partners that would like assistance with any planned media activities are encouraged to reach out to RVA directly:

Dr Jim McGill receives 2021 Australia Day Honours

Rare Voices Australia (RVA) congratulates Dr Jim McGill on his 2021 Australia Day Honour for significant service to metabolic medicine, to biochemical genetic pathology, and to medical education.

Dr McGill is a longtime champion of rare diseases. He is a world leading expert in a range of metabolic conditions and is a leader in providing person-centred care. Additionally, he has a long history of providing excellent clinical care and compassion to Australians living with a rare disease and their families. Dr McGill’s dedication, generosity, and commitment to providing Australians living with a rare disease with a better quality of life, expert medical care, high quality research and support, is exceptional.

Over the course of his career, Dr McGill has participated in countless rare disease-related committees, conferences and has held numerous leadership roles. He has changed the lives of a countless number of Australian children as a passionate advocate for newborn screening. His work continues to ensure that Australia is a world leader in newborn screening in terms of uptake, quality, number of conditions diagnosed and safety. 

Now retired from clinical practice, Dr McGill will be missed by his patients around Australia. RVA thanks Dr McGill for all of his work in the rare disease sector and for his immeasurable contribution!

“Together we are Stronger”: Transforming Uncertainty Into Hope

This article is part of Rare Voices Australia’s new Changemakers series. Click here to find out more and to share your story.

Learn how one family’s 14-year diagnostic odyssey led to the birth of SCN2A Australia.

Kris Pierce took her newborn son, Will, home from hospital amid a mountain of grief. Will was diagnosed with a progressive neurological disorder called Alpers Syndrome and his health was expected to deteriorate to the extent that he would pass away within 12-months.

Will in his happy place, on the farm.

“Will began to show small developmental gains, however, the neurology team felt it was unlikely there was a different outcome for Will. Years down the track, we were still being told, due to his symptoms and EEG recordings, he most likely has Alpers Syndrome,” says Kris.

“While trying to accept Will’s shortened life expectancy, we were also advised that due to the genetic nature of Alpers Syndrome that Will’s twin, Ella, could have the condition.”

Over the years, Will and his family spent a lot of time in hospital and Kris describes many moments when she didn’t think they would bring their son home.

The consequences of diagnostic limbo

“Not having a diagnosis was challenging as there were no answers, no treatments and most importantly, no tribe to connect with. We did not fit in anywhere and therefore, as a family, we went it alone for those first 14 years,” Kris says.

She admits that many medical appointments felt pointless. Sadly, Kris and her family are not alone. Diagnostic delay and misdiagnosis are common in rare diseases. An Australian survey found that 30% of Australian adults living with a rare disease are impacted by a diagnostic delay of more than five years, while almost half received at least one misdiagnosis.

Will’s case also involved an 18-month delay in the family obtaining Will’s genetic results.

“It took us changing to a new neurologist who recognised Will’s case from a recent paper written by a Melbourne neurologist on SCN2A. Within a week, the neurologist ensured we were informed of the outcome of the genetic testing. Will was diagnosed with SCN2A, one of the genes most commonly associated with early-onset epilepsy, autism and intellectual disability,” says Kris.

“While the result did not affect Will’s treatment, it had a huge impact on us. We were devastated to know there was a paper written about Will and we still were not aware of his condition. The path to get a diagnosis was certainly traumatic and has a lasting impact on both myself and Will’s dad, David.

“My advice to parents of children living with a rare condition is to continue asking questions. If you don’t get the answers you are looking for, get a second opinion. Follow your gut instincts as you know your child best. We often educate doctors about our child’s rare condition.”

Moving on with life, one day at a time

Once Will received a diagnosis, Kris’ family linked in with other SCN2A support organisations based overseas.

“It become clear that may issues are local. Across different countries, health systems are very different, not only in terms of how we access clinical care but also how we pay for them,” Kris says.

“Drug approval and drug reimbursement also requires local advocacy. It is devastating to hear drugs available in other parts of the world are not available in Australia for our rare children.”

Another impetus for forming a local regional organisation was that most of the science about SCN2A in 2019 was originating out of Melbourne.

Kris admits, “It is uncommon in the rare disease community to have your particular condition being looked into in your country, let alone your own hometown. In Melbourne, we have world leaders in SCN2A that we’re working with to progress not only in terms of the science but also to improve the health outcomes through advocacy.”

Will showcasing his love of farming.

Establishing SCN2A Australia

Utilising their background in health and education, Kris and David looked at what was already available globally and then built education content for families, as well as researchers and clinicians, that aimed to fill existing gaps. Since SCN2A Australia’s inception, the organisation has:

  • Collaborated with the International SCN2A Natural History Study, which is coordinated out of Melbourne. SCN2A has been instrumental in ensuring global engagement as well as working with those involved to ensure data access moving forward.
  • Co-founded Genetic Epilepsy Team Australia (GETA) to collaborate with other rare epilepsies to progress science, advocate and fill a gap in support services.
  • Continued mentoring and supporting the development of SCN2A organisations in other regions. SCN2A is developing an international collaboration that will co-ordinate global activities to accelerate awareness, research, and potential treatments for families impacted by SCN2A.

Depending on the longer-term impact of COVID-19, the first clinical trial for SCN2A is scheduled to commence in Australia in 2021. Kris says that the National Strategic Action Plan for Rare Diseases (the Action Plan) will provide a roadmap for how organisations can support families to gain access and participate in trials relevant to their condition. She says that the Action Plan will assist SCN2A will their advocacy.

Kris adds: “With the emergence of rapid genomic testing, families are getting a diagnosis, but the health system is not equipped to support our families.”

Rare lessons and takeaways: “together we are stronger!”

“Working in the rare disease space as a volunteer can be a thankless role. You need to celebrate the wins and acknowledge the impact you are having. Remember why you decided to dive in and keep reaching for the stars as our children deserve the best,” says Kris.

Kris highlights the importance of working with like-minded people who collaborate in an open and transparent fashion. She encourages people to find a mentor who has walked a similar path and to “be a sponge and learn all you can. Share your journey and empower those who come after you.”

Kris adds, “We cannot afford to work in silos, whether between countries or across diseases. Work with urgency, be collaborative and always check back in with your mission. Most importantly — have hope!”

Will has aspirations to become a highland cattle farmer.

Where there’s a Will, there’s a way: Will’s life now

At 18-years-old, Will is embarking on a path towards employment and becoming a highland cattle farmer.

“Will has always been outside the box and his passions are no different,” says Kris.

“We are not sure where his love of farming came from but we will support Will in becoming a farmer.”

Will remains functionally non-verbal and has cognitive challenges. He will require ongoing care as an adult but thankfully, Will’s health is stable.

Find out more about RVA Partner, SCN2A Australia, via their website.

WA Department of Health Stakeholder Consultation Focus Groups

The Western Australia Department of Health, Office of Population Health Genomics (OPHG) is currently reviewing the supports, services and systems available to West Australians living with rare, genetic and undiagnosed conditions and their families, and how the community navigates these systems. If you live in Western Australia (WA), the OPHG would like to know more about your and your family’s experiences. If your organisation/group has members who are based in WA, please feel free to pass on this invitation to them. See the flyer for the full details.

Stakeholder consultation focus groups

The OPHG is holding a number of stakeholder consultation focus groups for those living in WA with a rare, genetic or undiagnosed condition and/or their families. Your participation will help to shape the future services and system navigation for those living with genetic, rare and undiagnosed conditions across Western Australia.

The details are listed below.

Location: Face to face in Perth CBD (address to be provided) with online video conference options available.
Dates: Participants may choose from a morning or evening session on 2nd, 3rd, 8th or 9th of February.
Why: Community input plays a critical role in how future services are designed to create better outcomes.
RSVP: To learn more or register your interest please email or call 08 9222 2239.

Participants will be renumerated by the OPHG for their time.

See the flyer for the full details.

RVA is Hiring: Research & Evaluation Officer

Organisation : Rare Voices Australia
Location : Australia (The successful applicant may be based in or near any Australian capital city or major regional centre.)
Work type : Part-time
Profession : Policy & Research
Sector : Other
Salary type : Annual Package
Salary : $80k per annum full-time equivalent pro rata, plus super
Application closing date : 31 Jan, 2021

About the role

The Research and Evaluation Officer will play a key role in facilitating the collaborative implementation of the National Strategic Action Plan for Rare Diseases (the Action Plan), including leading the development of an online digital repository. This role will source and conduct high quality evidence-based research and program evaluation to support RVA’s advocacy, policy development and education activities. This role will also cultivate research partnerships with external organisations. This position would be well suited to an individual who is skilled in strategic research and evaluation, has strong communication skills and who enjoys working collaboratively as part of a team.

About the organisation

Organisation Name : Rare Voices Australia

Rare Voices Australia (RVA) is Australia’s national non profit peak body, representing people who live with a rare disease. RVA is dedicated to working with all stakeholders to drive the best outcomes for Australians living with a rare disease.

  • We provide a strong unified voice to advocate for rare disease policy reform, as this is essential to improving the lives of the estimated two million Australians living with a rare disease.
  • We progress the collaborative implementation of the Action Plan. RVA led the collaborative development of the Action Plan, which was launched in February 2020 by the Australian Government with strong bipartisan support. Developed ‘by the rare disease sector, for the rare disease sector,’ the Action Plan is the first nationally coordinated effort to address rare diseases in Australia.
  • We provide leadership and advocacy, raise awareness of issues and influence policy by engaging with all stakeholders in the rare disease sector and facilitating collaboration.
  • Our collaborative approach to working with our RVA Partners and stakeholders ensures our actions are well considered and well targeted, sustainable, and geared towards achieving a high collective impact.

Our national team is small, collaborative and strategic. We are innovative thinkers who are nimble and proactive. We are comfortable working remotely as our team members are located across Australia. We all pitch in when needed, and act with the highest level of integrity and respect for our RVA Partners and stakeholders. We thrive on achieving progress on the big issues for people living with a rare disease.

How to apply

Position Description : PD Research & Evaluation Officer – January 2021

Forward your application addressing the Selection Criteria, as well as a copy of your CV to Nicole Millis: by 31st January 2021

Please quote in application: Research & Evaluation Officer