Advocacy

Pamela at the Australian Bone Marrow Donor Registry Headquarters in Sydney

Our Advocacy Work

Part of what we do at UR the Cure is to advocate for changes to make it easier for people to join the blood stem cell donor registry (Australian Bone Marrow Donor Registry). We also network with different organisations to influence and discuss opportunities on how they can better maximise opportunities within their organisations to increase awareness and ultimately help us add more people onto The Registry in a more strategic way…looking at the “bigger picture” and the system as whole.

For example we meet with key stakeholders like the Australian Bone Marrow Donor Registry, Red Cross Lifeblood, government representatives and politicians, other charity organisations like the Cancer Council Victoria, the Leukaemia Foundation, the Federal Ethnic Communities Councils of Australia, the Haematology Society of Australia and New Zealand, attending and presenting at conferences and more. Check out the news and media page where some of this work has been reported on.

If you would like to help in this area please consider giving a financial donation, UR the Cure runs purely on a voluntary basis and a donation can help with things like the travel costs associated to allow us to do more and more! You can also follow us on social media to stay up to date and help with any other advocacy campaigns we are doing (ie - signing petitions, participating in surveys, writing to health ministers and more).

September 2023 - Submission to Victorian Parliamentary Inquiry into increasing the number of registered organ and tissue donors

UR the Cure sent through a submission to the Victorian Parliamentary inquiry into increasing the number of registered organ and tissue donors. Representing the patient community, our focus of the submission was around the adverse impacts on the patient community due to government inaction and our strong support of the Australian Bone Marrow Donor Registry’s submission, and the need for governments to quickly release the full $12.8 million of held funding to implement cheek swab testing to recruit more donors. Our submission can be viewed on the inquiry web page here.

David, Pamela and Biff at the media launch — Left to right: David (UR the Cure volunteer), Pamela (UR the Cure Founder) and @Biffrunner (UR the Cure volunteer) at the media launch

March 2023 - Federal Health Minister announces he will cut through red tape, cheek swabs launch online (with limited availability)

A huge positive step forward happened in March 2023 with Australian Health Ministers acknowledging the need to urgently recruit more donors to the Australian registry! Federal Health Minister Mark Butler agreed to release $1 million for the ABMDR’s Strength to Give cheek swab program, the Australian Bone Marrow Donor Registry (ABMDR) were so encouraged by the announcement that they launched the online ordering of cheek swabs. The total amount we have been asking the governments to release is $13 million and so the funding released so far allows for a limited number of swabs to be ordered online. Read the summary letter below that we sent to all Federal and State Health Ministers after the announcement (in “The 21st-50” section below). It is still the greatest leap forward Australia has seen in over 20 years regarding stem cell donor recruitment and we are hopeful to hear more about the government’s decision to release the rest of the funds by the end of April as promised. UR the Cure was part of the official “cheek swabs launch” in Melbourne, broadcasted by Channel 7 News (see media page) for the video!

Pamela (UR the Cure Founder) reflects on the advocacy work and the collective efforts of many people around Australia that led to the cheek swabs being launched online

2022 July Campaign: The 21st 50

Pamela founder of UR the Cure meeting with Deputy Prime Minister of Australia

The “21st 50” is the second phase of the The 20-50 campaign to celebrate reaching a huge milestone of 5,000 signatures on the petition to bring back cheek swab testing into Australia!

Where: Australia-wide

When: July 2022

What: Biff is running another 50km to hand deliver the petition in Victoria to Minister Ged Kearney (Assistant Minister for Health and Aged Care) and Minister Mary-Anne Thomas (Minister for Health Victoria). We also have volunteers all around the country doing the same with the State Health Ministers and Federal Health Minister Mark Butler. All of our wonderful volunteers who will be delivering the petition have been personally impacted and connected to the cause. Read more here about each of them.

How to support: You can continue to sign the petition and spread the word on social media of what we are doing! If you have any contacts of influential people or contacts in the media to help us shed a spotlight on what we are doing please email info@urthecure.com.au

More info: Alongside delivering the petition to the Health Minsters, we also sent letters to the Ministers requesting meetings which successfully sparked a series of meetings with State and Federal Ministers. You can read a letter here that we sent to all Federal and State Health Ministers as well as other key politicians and MP’s which summarises these meetings. We also worked closely with MP Robbie Katter who was also helping to advocate for the change and Pamela our founder even met with the Deputy Prime Minister Richard Marles about the matter!

2022 Campaign - The 2050 Event to bring back the cheek swabs!

One of our supporters Matt, also known as @Biffrunner has driven the initiative of “The 20-50”! He is helping us raise awareness on stem cell donation and the need to bring back cheek swab testing in Australia. Biff is running 50km per day for 20 days to raise awareness on stem cell donation and in honour of his Mum who is alive today because of her stem cell donor!

Why the numbers 20-50? 50 people per day are diagnosed with blood cancer in Australia. Australia needs 20,000 people per year to join the stem cell donor registry, this is so patients with blood cancer and other blood disease who require a stem cell transplant can find their lifesaving stem cell match, this is often their only chance for a cure. Visit the events page for more information.

Unfortunately Australia’s donor pool is shrinking and we need the government to fund cheek swab testing to make it easier for people to join & save more lives!

We are asking people to do 2 things in support of Biff and help us bring back the cheek swabs:

1. Email a letter to the Health Minister(s) Download letter templates here

2. Sign the petition by clicking the link here

You may also wish to download our Cheek Swabs fact sheet to share with others and help spread the word. The fact sheet summarises the issue and what we are asking of the governments

At the end of last year, the government finally released the PWC report of the review that was undertaken of the HPC (Transplant) Sector and the National HPC Framework was formed. The review took over 4 years to complete, we wrote a submission to this review back in 2017 with a number of recommendations; one being to implement the use of cheek swab testing.
The Government’s Framework outlines the problems caused by our dependence on overseas stem cell donors and that improving the donor pool is a priority. The framework however does not provide a solution or a commitment to increasing donor recruitment.
In response to this report we wrote a letter to the Federal government (both the acting and shadow health ministers) and to State governments. We asked 3 main questions;
If Strength to Give cheek swab testing is not the solution, then what does your government propose the solution to be? And in what timeframes can the solution be implemented? What are your government’s hesitancies in moving forward with the Strength to Give model?
The governments’ response to this is that they are committed to improving Australia’s donor pool and that a review needs to be undertaken of the Strength to Give cheek swab program and recruitment methods before a decision can be made. UR the Cure is not satisfied with this response, especially since the last review took over 4 years to complete. This vague response from the government does not outline when the next review is due to complete or what the timeframes are for the implementation of a solution. We cannot keep running review upon review while Australians are dying waiting for their stem cell match. You can download our response letter here
Additionally;
- An independent review by the INCA consulting group has already been completed and supplied to the government. It has overwhelming evidence that the Strength to Give cheek swab program was a success. Why do we need another review? The Australian Bone Marrow Donor Registry (ABMDR) has also provided governments with sufficient reports and information on the viability of the program
- ABMDR’s public financial reports state that they hold sufficient funds to implement a 5 year recruitment program immediately through cheek swabs but cannot commence because of Commonwealth-imposed contractual constraints. So at a Federal level the contract needs to be amended to allow them to access that money. The money has been sitting in a bank account not used for 20 years now (revenue from the cord blood stem cell sector). Nothing has been tabled in the last 20 years on what to do with this money.
- At a State level, all governments need to approve this change in the contract. So 2 things need to happen; the Federal government need to change the contract and the State governments need to approve it
The time is now! The Strength to Give cheek swab program can be turned on almost overnight to start saving the lives of Australians now!
Australians cannot wait any longer whilst the government contemplates a solution. Too many lives are being lost while the Commonwealth and States fail to reach a collective decision.
Please support us by emailing the Health Ministers and signing the petition in the links above.

2021 Campaign #2 - Bring back the cheek swabs!

Another disruption to government funding for the cheek swab program in 2021 saw us go back into fighting mode! This time we are fighting to get the cheek swabs back once and for all! The Australian Bone Marrow Donor Registry has a goal to recruit 100,000 people onto the donor registry in 5 years. We threw our support behind a change.org petiton started by former patient Sophie Patnicroft-Gray and for September’s blood cancer awareness month and World Marrow Donor Day 2021, we created a video featuring Pamela, founder of UR the Cure. A story is powerful to move people into action and Pamela shared her story and urged everyone to sign the petition. UR the Cure has been advocating for cheek swabs since 2015! We’ve tried everything…a submission with recommendations to a government review (supported by over 500 survey respondents), meetings with politicians, letters to politicians (we’ve lost count how many), a survey and petition with over 300 respondents, interviews with independent reviewers of the program, letters to key stakeholders, participated in media stories and more! We are really hoping that this time around will be the last time we need to put up a fight and the government will finally step up and fund the cheek swab program properly. Watch this space!

- The reason that 85% of Australian patients receive their stem cell donation from overseas is because those overseas countries adopted cheek swab testing many years ago to create a good pool of donors
- The global donor pool has increased by 32%, unfortunately Australia’s donor pool has shrunk by 3.5%
- Over 20,000 older donors will retire from the Australian Registry by 2022, and the recruitment of blood donors through Red Cross Lifeblood is only expected to replace around half of these
- Most countries aim to recruit 2-3% of their population as donors. Australia’s pool of contactable donors is only around 0.5% of the our population
- Younger donors are crucial in finding the best matches for patients. The most populated age group in the global donor pool is 26-35 years of age, in Australia it’s 46-55 years of age
- Governments conducted a review into the bone marrow transplant sector which has never been published. UR the Cure wrote a submission with recommendations to this review. We have contacted the government to seek access to the Review report multiple times but have not been successful. The findings of this report still remain a mystery!
The facts above prove that the Red Cross Lifeblood service is not effective on its own to successfully recruit potential bone marrow donors and this is evident in the shrinking donor pool
Red Cross Lifeblood have so far declined to comment on how much funding it receives for donor recruitment
Cheek swab recruitment saves lives by better targeting the right populations and better accessing the public through their easy use and online ordering model!

Watch the video we created for the 2021 Campaign on World Marrow Donor Day urging everyone to sign the petition to bring back the cheek swabs

Pamela meeting with Liberal Senator for Victoria, Senator Sarah Henderson

2021 Campaign #1 - SOS: Save Our Swabs

UR the Cure as a partner of the Strength to Give campaign saw enormous benefits and cheek swabs made our work to add more people onto The Registry so much easier. People could finally order their kits online, we were able to take the cheek swabs to community groups and workplaces and better engage with them (which in turned allowed us to better target certain multicultural groups and young people). It allowed us to access reporting which meant for the first time ever we were able to measure the outcomes of our work which in turn gave us confidence to do some fundraising to continue to grow our activities. It allowed us to better support patients and their loved ones by supporting their search campaigns. The benefits of cheek swabs have a positive flow on effect in many different ways. We know that reverting back to the old ways of recruiting people through the blood service is simply not effective enough (if you are interested scroll down to download the submission we wrote about this a few years ago). In April 2020 we released a petition and conducted a survey with almost 300 people submitting a response, providing valuable and detailed commentary which we collated into a report and presented to key stakeholders. We fought so hard to have cheek swabs introduced and we fought hard to get them back!

Click here to download the “Save Our Swabs - Survey and Petition Summary Report”

2019 - Donor Research Network Meeting

Pamela at the Donor Research Network meeting

In November 2019, Pamela (founder of UR The Cure) presented at the Donor Research Network meeting at the University of Queensland in Brisbane on the topic; “How can we attract culturally diverse donors?” It was a great networking opportunity with contacts from different research fields, Red Cross Lifeblood, the Australian Bone Marrow Donor Registry, Organ Donation Australia, the Federation of Ethnic Communities Councils of Australia and more. We are pleased to say that we are continuing to develop these relationships and continue to work with the Donor Research Network to help us in our mission! Click the links to view what we presented on the day - PowerPoint Presentation and Presentation Notes

Pamela with Marilyn from Cancer Action Victoria at the VICS conference

Victorian Integrated Cancer Services Conference

In May 2019, thanks to Cancer Action Victoria, we were sponsored to attend the VICS conference in Melbourne. It was an inspiration to be in a room full of people all dedicated to the cause of improving patient outcomes in cancer. There were lots of interesting talks and so great to see some projects focused on improving cancer outcomes for culturally diverse patients. These patients across many types of cancer typically experience poorer outcomes, and we all know this is also the case for those searching for their stem cell match.

UR the Cure Submission to the Australian Bone Marrow Transplant Sector Review

UR the Cure along with help from the "Find Tan a Donor" campaign have sent a submission to a government-funded review with the aim of improving donor recruitment strategies and support for patients searching for a stem cell match. Thank you to everyone who supported the submission and filled in the survey. Over 500 people responded to the survey and we were able to collect very powerful data.

The government-funded independent review of the entire bone marrow transplant sector, including the ABMDR occurred in 2017. The outcomes of the review will help shape the donor recruitment strategy to make sure it effectively meets the needs of all Australian patients.

Many blood cancer patients with an ethnic or indigenous heritage struggle to find their lifesaving stem cell match because they are poorly represented on the Australian Bone Marrow Donor Registry (ABMDR). A patient is more likely to find their match with someone who shares a similar ethnic background to them.

We made several recommendations in the submission one of which was to implement cheek swab testing as a way for people to join, and we are happy to see that this has finally been introduced into Australia!