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.

COVID-19 updates from the National Disability Insurance Agency

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.

Priority Testing and Turnaround times

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. 

Responses received to date: 

Queensland – Dr Jeannette Young PSM, Chief Health Officer, Deputy Director-General  

Tasmania – Hon Sarah Courtney MP, Minister for Health 

Western Australia –  Dr Andrew Robertson, Chief Health Officer

South Australia – Stephen Wade, Minister for Health and Wellbeing

Victoria – Jenny Mikakos MP’s office, former Minister for Health, Minister for Ambulance Services 

Federal Budget 2019-20 and Rare Disease

On Tuesday evening, Treasurer Josh Frydenberg announced the Morrison Government’s 2019-20 Federal Budget. As a peak body, Rare Voices Australia (RVA) attended the Department of Health 2019-20 Federal Budget Briefing in Canberra. In the lead-up to and beyond the election (reports indicate that an announcement is imminent), RVA will continue to work with all Parliamentarians including the Government, the Opposition and Independents, to address unmet rare disease policy needs within but also beyond the Health Portfolio (eg. the National Disability Insurance Scheme).

RVA will continue our critical stakeholder consultation and development of the National Strategic Action Plan for Rare Diseases. We are also working with The McKell Institute on Rare Disease and Access to Services, drafting a White Paper that will also inform part of the Action Plan.

Click here to read RVA’s full statement.

Morrison Government announces support of National Rare Disease Framework

Rare Voices Australia (RVA), the national peak not-for-profit organisation advocating for the nearly 2 million Australians living with rare disease, welcomes the Morrison Government’s support of a National Rare Disease Framework. The Hon. Greg Hunt MP, Minister for Health, made the announcement today as part of the official opening of RVA’s biennial 2018 National Rare Disease Summit, which is taking place on 16-17 November 2018 in Melbourne.

The Morrison Government will commission RVA to work with all stakeholders to deliver the National Rare Disease Framework with $154,000 in grant funding. The Minister acknowledged the work of Rare Voices Australia which has “made such a difference… a driving force for change.”

To read RVA’s full response, click here.

RVA Board of Directors Positions

RVA currently has vacancies for volunteer directors on our Board. Board meetings are held via teleconference every 2 months and involve 1 to 2 hours of pre-reading. We are looking for people with skills and capabilities that will help RVA improve the lives of Australians living with a rare disease. In particular, we are looking for people who have experience in fundraising, PR and marketing, financial management, governance, law or leadership of not-for-profit organisations. If you have a passion for this area and believe you have skills to offer, we would love to hear from you.

If you’re interested in applying for an RVA Board position, please provide a CV and email it to: admin@rarevoices.com.au

Life Saving Drugs Program Reform

RVA is pleased to welcome the Turnbull Government’s announcement that ended the long-standing uncertainty regarding the Review of the Life Saving Drugs Program (LSDP). We commend the Government’s commitment to retain and improve the LSDP, drawing upon the recommendations of the Review. To read the Wilson Review Report, the Government’s response to the Report and FAQ, click here.

Read RVA’s media release here.

As many of you are aware, this has been a long and challenging issue. RVA thanks everyone involved for their persistence and dedication – you’ve all played an integral role in making the future brighter for rare disease patients in Australia!