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COVID-19: information and useful resources

As the COVID-19 pandemic continues, the team at Rare Voices Australia (RVA) shares our best wishes to those impacted personally and to the wider community during these uncertain times. You can read the full message that RVA distributed on 18 March 2020 here.


We encourage all people living with a rare disease to talk to their doctor about COVID-19 to understand the implications for their unique circumstances. RVA is continuing to monitor the situation closely and will act accordingly.

 

LATEST NEWS: RVA advocacy update (8 April 2020)

Critical care guidelines for Australians living with a rare disease

 

On 8 April 2020, RVA released this statement, which has been developed in conjunction with our Scientific and Medical Advisory Committee following the COVID-19 press release issued by EURORDIS on 31 March 2020. 

 

On 26 February 2020, the Federal Minister for Health, the Hon Greg Hunt MP, formally launched the National Strategic Action Plan for Rare Diseases (the Action Plan). RVA led the collaborative development of the Action Plan with its vision being to achieve the best possible health and wellbeing outcomes for Australians living with a rare disease. The priorities underlying this policy framework, including awareness and education, care and support and research and data, are all highly relevant to Australia’s response to the COVID-19 pandemic. RVA urges policy makers and authorities to specifically consider people living with a rare disease during the COVID-19 crisis, and to take action to ensure their individual clinical needs are met. 

 

Updates and official advice from the Australian Government


Please see the Australian Government’s Department of Health Coronavirus (COVID-19) Health Alert website for the latest information.


The Government has identified those with chronic medical conditions and compromised immune systems as being among those most at risk.

 

An advisory group has been established by the Morrison Government to guide development and implementation of a response plan focusing on the unique health needs of people with disability during the coronavirus pandemic. Click here to read more. 


National Coronavirus Helpline


For information on the coronavirus disease (COVID-19), call the Australian Government's National Coronavirus Helpline on 1800 020 080.

 

COVID-19 App and WhatsApp feature

 

From 29 March, a new app is available and allows users to navigate the latest advice and information about COVID-19 in real-time. Coronavirus Australia, is available from Apple App Store (Apple devices) and Google Play (Android devices). The Government has also launched a new WhatsApp feature.

 

COVID-19 Symptom Checker


You can use Healthdirect Australia’s Symptom Checker if your circumstance is not urgent and to find out if you need to seek medical help. See Healthdirect Australia's website for more information about COVID-19.


Other RVA advocacy updates


Priority testing and turnaround times (23/3/2020)

 

RVA has reached out to all state Health Ministers and Chief Health Officers to request that they prioritise COVID-19 testing and turnaround times for people living with a rare disease who are displaying symptoms. Here is a template of the letter that has been sent. We encourage you to use this letter in your ongoing individual advocacy.

 

Life Saving Drugs Program (LSDP)

 

RVA is liaising with our RVA Partners that represent members in their community who access the LSDP to ascertain the full potential impacts of COVID-19 on the LSDP. We will communicate any updates as we have them. RVA is aware that the consumer nominee on the LSDP Expert Panel has pro-actively been communicating with the LSDP regarding potential impacts and has put forward initial recommendations.


Updates to be aware of

 

05/04/2020 - NDIS: priority home delivery services

 

From Monday 6 April, NDIS participants can purchase grocery items online to be delivered to their home. Click here to read more.

 

28/03/2020 — medicine supplies in Australia


Medicines Australia (MA) is advising that Australia has sufficient supplies of medicines and are strongly discouraging the stockpiling or panic buying of medicines. It’s important that people, including those living with a rare disease, only obtain the medicines they immediately require.


MA has encouraged pharmacists and GPs to help manage the supply of medicines and support the Government’s purchasing limits on selected medicines. Useful links for more information:


COVID-19 limits on dispensing and sales at pharmacies

Limits on dispensing and sales of prescription and over-the-counter medicines

TGA cautions against over-buying medicines

TGA response to Covid-19

 

There are certain medicines deemed critical by the Therapeutic Goods Administration (TGA) and MA. If there was no availability or if there was an interruption to treatment, this could result in significant health impacts. The other scenario being anticipated is an increased demand of some medicines due to COVID-19. See this list, published on the TGA website — other medicines may be added over time.


25/03/2020 — NDIS


Here is a snapshot of the COVID-19 updates as of 25/3 from the National Disability Insurance Agency (NDIA):

- If a participant has a scheduled plan review, the NDIA will contact them by phone or email to undertake their review. As part of this plan review process, a participant can discuss having a new plan in place for up to 24 months.

- The NDIA will be making changes to NDIS systems over the weekend to make sure participants have the funding they need during the COVID-19 pandemic.

- To ensure participant plans don’t end, on the day a plan is due to expire, it will be automatically be extended by 365 days. Participants who have plans that expire soon, do not need to do anything to have their plans automatically extended by 365 days.

 

Click here for full details.


21/03/2020 — NDIS


Rare Voices Australia welcomes new measures announced to support NDIS participants and providers through COVID-19. Click here to read the Hon Stuart Robert MP’s media release.


19/03/2020 — Access to medicines


Medicines Australia is advising that there are no anticipated shortages of medicines due to COVID-19. This means there is no need for anyone, including those living with a rare disease, to stock up with more than their usual supply of medicines. Click here to read more.


Other useful links and information


People with Disability Australia


Australian Department of Health guidance and announcements to be aware of:


Identifying the symptoms


Pharmacy deliveries to COVID- affected and vulnerable people


Guidance on isolation


Advice on public gatherings and visits


COVID-19 related scams


The Australian Government agency, Stay Smart Online has issued a warning related to COVID-19 scam messages. Click here for more information.


World Health Organization: Rolling Updates on COVID-19

 

24/7 mental health support

 

If COVID-19 and its impacts are making you feel anxious or worried, there are a number of support organisations available 24/7 that can help with providing mental health support. See Healthdirect Australia's below image for health services.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Education resources 

 

For a range of education resources, see the Syndromes Without a Name (SWAN) Australia website.

 

If you're finding it difficult to explain COVID-19 to your kids, SA Health has developed an online booklet for young children that explains what COVID-19 is and how we can stop it from spreading. Download the booklet here: https://bit.ly/3aKRiPd