Leukaemia Foundation

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Leukaemia Foundation 🩸 We stand with Australia to help everyone impacted by any blood cancer - with care 💙 Your blood is a remarkable thing. We’re funding research to find a cure.

We stand with Australia to help cure and conquer every blood cancer – with care. It keeps you alive by giving your body what it needs, taking away what it doesn’t and fighting off infection. But more than 110,000 people in Australia are living with the devastating impact of blood cancer and it’s one of the biggest causes of cancer death. It’s a cancer of your blood and immune systems, preventing them from doing what they need to keep you alive and healthy. Blood cancer develops in the places of your body where blood is made, but its exact cause is unknown. A range of things affect someone’s chance of surviving blood cancer and, it can be incurable. There are many different types of blood cancer and together they are among the most prevalent and deadly cancers in Australia today. The most common types of blood cancer are called lymphoma, leukaemia and myeloma. When you support us, you support the blood cancer community. We’re driving equitable access to better diagnostics and treatments and, we’re helping people already impacted by blood cancer through emotional support, transport services and providing a home-away-from-home when families have to relocate to access life-saving treatment. Learn more: www.leukaemia.org.au

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“You often live in a world of silence because it’s just easier to say you’re okay..."🩸 In 1973, Karen was diagnosed with...
15/10/2026

“You often live in a world of silence because it’s just easier to say you’re okay..."

🩸 In 1973, Karen was diagnosed with acute lymphoblastic leukaemia (ALL). At that time, the survival rate was less than 5%.

"The treatment at this time was chemotherapy and cranial radiation. The radiation was given over a period of one month, with no scatter precautions and purple lines down my face.

“There was limited knowledge of the condition and no resources to learn about the survival rate."

Over 50 years on, Karen says living with the long-term effects of cancer treatment is a very debilitating and stressful experience.

“It's quite a battle to live in the bubble of being a childhood cancer survivor.

"Society is limited in its knowledge about life after cancer. It becomes really frustrating and difficult to explain to people.

"From a long-term survivorship perspective, the costs of medical procedures and medications are extremely expensive.

"There were no foundations around when I was going through my cancer treatment. No internet, no support groups, and no literature for my parents to read.

"Thankfully, times have changed for the better." 🩵

“We’ve calculated the financial impact of Brandan’s cancer journey at over $350,000 in lost income, costs and long-term ...
14/10/2026

“We’ve calculated the financial impact of Brandan’s cancer journey at over $350,000 in lost income, costs and long-term impact…”

👩‍👦 For National Carers Week, Kylie has shared her family's journey since her son Brandan was diagnosed with leukaemia in 2024.

“What we thought was a bowel issue, we pushed for a blood test, and shortly afterward we received the call telling us to go straight to hospital.

“We live in Cairns, and within hours we were on a plane to Brisbane for treatment. We never returned home as a family...

💲 “I don't think people realise how quickly the hidden costs of cancer add up. I had to shut down my business almost overnight to become Brandan’s full-time carer, meaning we lost my income while still trying to maintain our family financially.

“We faced accommodation, food, travel between Cairns and Brisbane, relocation, medical, and everyday living expenses, plus many costs Medicare or other assistance didn't fully cover.

“Redkite helped us pay the car insurance and registration, and we were able to use the petrol vouchers. It made life so much easier.

"If we didn’t have that in those first six months, I think we would’ve been on the streets. You never think it’s going to happen to you. And when it does, it takes over. It’s all-encompassing.

“Our new normal is very different from life before Brandan’s cancer. We’re still in Brisbane so Brandan can remain close to his treating hospital and medical team, and we know the impact of his illness will continue long after treatment finishes.

🎬 “His dream of joining the Navy is no longer possible, but through opportunities with Redkite’s Dare to Dream Scholarship, he discovered a passion for media and has completed a Certificate in Film and Media.

“I’m also finally returning to work after putting my career and business on hold, so we’re slowly rebuilding our lives and looking forward to what comes next.

“When your child is diagnosed, you need to be able to focus on keeping them alive and supporting your family, not proving over and over again you’re in financial crisis.

“Please don't be afraid to ask for help, and keep asking even if the first answer is no. You don't know how much you’re carrying until someone finally helps carry it with you.”

13/10/2026

🚨 BREAKING: Bipartisan commitment to end Victoria's cancer postcode penalty!

Within 24 hours of the Carroll Labor Government's $53.6 million election commitment to the Victorian Patient Transport Assistance Scheme (VPTAS), the Liberal and Nationals Coalition has matched it in full.

We commend Opposition Leader Jess Wilson, Shadow Health Minister Georgie Crozier, and the Coalition for acting immediately and committing to raise the accommodation subsidy from $49.50 to $125 per night and the vehicle rate from 21 to 35 cents per kilometre.

CEO Chris Tanti said the speed of the response showed the strength of community support behind the campaign.

🗣️ "This morning we said Labor's commitment was a breakthrough, but not a guarantee. Now, with both major parties committed to the same rates, it is far closer to one."

We thank the Coalition for matching this commitment without delay.

We also thank the more than 3,000 Victorians who signed our Cut the Cost of Cancer petition ( cutcancercost.org.au 📝), and our partners in the VPTAS Alliance, whose combined advocacy made this impossible to ignore.

13/10/2026

📣 Major patient transport funding news!

We welcome the Carroll Labor Government’s election commitment to invest $53.6 million in the Victorian Patient Transport Assistance Scheme (VPTAS).

The investment would lift the accommodation subsidy from $49.50 to $125 per night and the private-vehicle rate from 21 to 35 cents per kilometre.

If delivered, the commitment would move Victoria from last to equal first alongside South Australia on our National Patient Travel Scorecard, released last month.

The commitment follows the launch of the Cut the Cost of Cancer campaign, with more than 3,000 Victorians signing a petition calling for the accommodation rate to be lifted to $125 per night.

The Leukaemia Foundation is one of 19 cancer, research and consumer organisations in the VPTAS Alliance calling on Victoria to lift its regional patient travel support.

Our CEO, Chris Tanti, said the commitment would ease a financial burden that regional Victorians had carried for too long.

🗣️ "This commitment demonstrates what’s possible when community advocacy and political will come together.

“Regional Victorians facing cancer now have something they haven’t had before: a clear, costed promise to end the postcode penalty. We’ll be holding every party to that standard.

"This commitment is a breakthrough. However, it isn’t a guarantee. Until every party has made its position clear, regional Victorians facing cancer still don’t know whether this support will be there after 28 November.”

🩸 For someone fighting blood cancer, delaying or missing treatment can have serious, life-threatening consequences.

Blood cancers are among the most complex cancers to diagnose and treat, often progressing rapidly and requiring urgent, intensive and highly specialised care.

💲 Patients and their families can face the double blow of reduced income alongside mounting costs for treatment, medication, travel, accommodation, and everyday living expenses.

Help support all Australians impacted by cancer by signing our petition at cutcancercost.org.au 📝

🩸 Greg survived blood cancer twice, after an unusual blood test result first sent him to the hospital. "I was first diag...
12/10/2026

🩸 Greg survived blood cancer twice, after an unusual blood test result first sent him to the hospital.

"I was first diagnosed with MGUS in 2008, which progressed to multiple myeloma. My haematologist sent me for tests at a hospital, where a nurse told me I had cancer. That really shocked me!"

While undergoing chemotherapy for myeloma, it was discovered that Greg had lymphoma in his stomach 💔

“I needed surgery – my stomach, spleen and part of my pancreas were removed. In 2017, I had a stem cell transplant.

"In 2020 I had radiation treatment on a lesion on my pelvis. I was in remission until 2025 but needed to start a trial immunotherapy drug that has since put me back in remission.”

While most of Greg's treatment was through the public system and saved him a lot of money, he says unseen costs of cancer have still affected his family.

💲“Being unable to work has been the biggest financial impact. The original haematologist and the outpatient drugs have been major costs.

“My family have been very supportive and work around my treatment days and side effects. We pretty much enjoy a normal life.

“The Leukaemia Foundation is and has been really supportive. The support contacts and being able to share the experience with others who understand has been terrific for us.” 🩵

09/10/2026

Your legacy is one of the most powerful things you can leave behind. What are you most proud of when looking back?

💻 Join Barry Du Bois on 22 October for our free webinar, 'Estate Planning with Purpose: Love Beyond Your Lifetime'.

The session will explore how your Will can reflect your values, priorities, and the legacy you hope to create.

By including the Leukaemia Foundation in your Will, you’ll bring people with blood cancer the best possible care and wraparound support.

For more information and to register, follow this link 👇

https://www.leukaemia.org.au/event/estate-planning-with-purpose-love-beyond-your-lifetime/?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAdGRleAU1Z2dleHRuA2FlbQIxMQBwZG9mAmZkaWQWUP_RpnJ2y8hWBd5c2IZt21R9vG2r7HNydGMGYXBwX2lkDzEyNDAyNDU3NDI4NzQxNAABp45vIck6okS51dASr0KCaWxVEUmLOZzRUfTvANB4B7HONjObuIOHS7355XGh_aem_n2_RzEoKPUa6zPGRVGrAOQ

📸 Earlier this week, we welcomed some of our inspirational Ambassadors and blood cancer advocates to our annual Ambassa...
08/10/2026

📸 Earlier this week, we welcomed some of our inspirational Ambassadors and blood cancer advocates to our annual Ambassadors Lunch in Sydney.

The lunch celebrated the invaluable contributions our ambassadors and advocates have made to the blood cancer community, and it was a poignant time to reflect and hear each other's lived experiences.

This shared space provided a wonderful opportunity to listen to their input and openly discuss our initiatives and shared goals for the future 🩵

We're so grateful for all of the work you do, and we can’t wait to catch up again Edwina Bartholomew, Elle Halliwell, Lyndey Milan OAM, Matthew Doyle, Humphrey B. Bear, Craig A Kocinski, Xavier Saviane, Sage Wilder, Luke Brattan, Briony Benjamin, Patt Bosen, Jacinta Stapleton and Urvi Majumdar comedy.

📲 Learn about our inspiring Ambassadors through this link 👇
https://www.leukaemia.org.au/about-us/ambassadors/

Mick was fit and exercising regularly when he went to the doctor with neck and shoulder pain.🗣️ “We discovered the pain ...
07/10/2026

Mick was fit and exercising regularly when he went to the doctor with neck and shoulder pain.

🗣️ “We discovered the pain was caused by a blood clot, and the underlying cause was identified as Polycythaemia Vera (PV), a type of Myeloproliferative Neoplasm (MPN).

“With MPN, blood tests can reveal you have one, but the type remains unclear until a bone marrow biopsy. Because they can carry different outlooks, it was an anxious wait.”

Because PV is rare, Mick turned to us to better understand his diagnosis.

“The Foundation was one of the sources I turned to early on to understand PV. I also started taking part in their Lived Experience Engagement Program (LEEP).

“It gives people with blood cancer a way to share their experiences and help shape the Foundation's services and programs. With an illness that can feel like it takes things away from you, having a way to give back is meaningful.”

While Mick has continued working, his diagnosis has still brought unexpected costs for his family.

“My wife has since taken out income protection insurance. I now incur my health insurance excess each year, and recurring medication costs and medical appointments with gap payments were also new expenses.

✈️ “One expense that took me by surprise is travel insurance. Covering my illness significantly increases the cost. And the insurance screening process is stressful and time-consuming, particularly working out what you're covered for and what limitations apply.”

Day to day, Mick says life remains relatively normal.

“I take daily medication and have regular medical appointments, but the kids' school and extracurricular activities dominate our schedule. We're active and social, and I've continued to work full-time.

“Fatigue can be challenging, but I've tried to maintain a normal cadence of life where practical.”

Shelley was a long way from home when she was given a shock acute promyelocytic leukaemia (APML) diagnosis. 🦷 "We were o...
02/10/2026

Shelley was a long way from home when she was given a shock acute promyelocytic leukaemia (APML) diagnosis.

🦷 "We were on a caravan adventure around Tasmania. Our friend broke a tooth, and while she saw a dentist, I had time for a routine blood test.

“Then came a phone call telling me to go to the emergency department at Royal Hobart Hospital. Our holiday took a very scary turn!” 😨

"Treatment was started urgently due to the acute and high-risk nature of this rare blood cancer.

"Daily blood product infusions, then four rounds of eight weeks of daily Arsenic Trioxide and All-Trans Retinoic Acid (ATRA) tablets. Then after eight months of treatment, a bone marrow biopsy confirmed I was in remission."

💲 Stranded in Tasmania during initial treatment, Shelley says it wasn't long before the out-of-pocket costs started to mount.

"We had the cost of flying home (I was unable to travel home on our booked boat travel) and the costs of meals for my husband while he stayed with me in Hobart during treatment.

“Loss of income has been the biggest financial cost, with brain fog, memory issues and treatment effects making returning to work challenging.

"A hidden cost is the constant trial of products to help with side effects. Specialised moisturiser, lip treatments, specialised shampoo - it becomes a constant, desperate battle to find relief.”

🩵 Shelley turned to us during her cancer journey to understand the financial and practical support available to her family.

"They were a friendly voice of truth to explain the financial support options during a confronting and overwhelming time. I was able to connect with other blood cancer patients to feel less alone.

“I’m still not working as I’m not ready for the potential stresses while dealing with issues following treatment. There's still so much to work through - the fear, the trauma, finding the new normal. Who am I now?

"Drawing, poetry and crochet, which helped me process my experience, continue to be a big part of my daily life. And now we're travelling in our caravan more!"

“The cost of parking should be included in travel subsidies for cancer patients.”🎄 On Christmas Eve 2016, Jenny was diag...
01/10/2026

“The cost of parking should be included in travel subsidies for cancer patients.”

🎄 On Christmas Eve 2016, Jenny was diagnosed with myelodysplasia (MDS).

After six months of unsuccessful chemotherapy, she underwent a stem cell transplant from a donor in Germany.

“Three weeks after my transplant, I got a blood infection, bowel infection, pneumonia and kidney failure. I was sent to the ICU, and my children were called to say goodbye...”

🩸 Jenny pulled through and remained in remission for four years, until preparations for a holiday to Africa led to a shock acute myeloid leukaemia (AML) diagnosis.

“I went to see my haematologist for a certificate as I wasn't allowed a yellow fever vaccine due to my transplant. He said, ‘You can't go to Africa. You need to go to hospital because you have AML’.

“I was in hospital having chemo within five days, but the first round didn't work. I was told if my second round didn't work, there was no chance of survival.”

🎙️ In the latest episode of our Talking Blood Cancer podcast, Jenny shares that she had to pay an extra $1100 for travel insurance - one of the many hidden costs of cancer she's experienced.

“As a self-employed single woman, I've had to bear the burden of additional out-of-pocket costs. Having no sick leave to fall back on, I had to rely on Centrelink to survive.

💊 “I have to take antiviral drugs as my immune system can't cope without them, and I can't get them on the PBS.

“As I live rurally, I had to leave my home to live in Sydney for extended periods. I continue to go to Sydney for a variety of specialists, which leads to large out-of-pocket expenses.

“But throughout my journey, the Leukaemia Foundation has supported me with valuable information leading up to my two stem cell transplants and continues to do so today.

“They also supported me with vouchers to help pay bills during treatment. I'm eternally grateful for the support they've given me.” 💙

🎧 Listen to this episode now on Spotify, Apple Podcasts, Amazon Music, or on our website.

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