Same cancer, same drug but our access to treatment was anything but consistent
They’re three women all battling an incurable type of blood cancer, but Neda, Nikki and Shirley have felt hardship in very different ways.
Before lenalidomide was listed on the PBS, the breakthrough medicine could cost more than $194,000 for single course of treatment.
But it was an option that could help these three Australians to prolong their disease in remission.
Unable to pay the $1,000 monthly cost, Neda Masters (pictured above) from Queensland was on the verge of moving to America where she could get affordable access the drug.
The 46-year-old mum said: “We didn’t have a choice. Thankfully, my husband had a job lined up but I didn’t know what I was going to do if my family couldn’t live and work in America with me.“
Getting access to the best treatment was going to come at huge cost. We were unable to make the move to America because of the COVID-19 pandemic.
“Thankfully, the PBS listing in March means I can access the drug here at an affordable price.”
Nikki Wagner from New South Wales could only initially afford three boxes of lenalidomide, calling them her “princess pills” with each small tablet costing around $250.
Thankfully, her brother intervened and raised the $18,000 needed to start maintenance on this drug.
The 56-year-old said: “It cost about $5,000 for each box of 21 tablets. There was no way we could continue to afford them.
“However, following the initial costs outlayed, I was told I would be getting the drug on compassionate grounds through the drug company. From then on, I was able to get a box for less than $8, a life-changing discount.”
Shirley Irwin was not so lucky. The 71-year-old from Victoria used $54,000 from savings to pay for her lenalidomide which she took for eight months.
The mother-of-two said: “I’ve had some difficulty coming to terms with spending the kid’s inheritance on this medication. But they assured me, ‘we don’t want the money, we want you’.”
I needed better information about clinical trial options
Matthew Fogarty has spent almost five years regularly travelling to the other side of the world to collect the handful of pills that keep his blood cancer at bay.
After running out of proven, effective treatment options in Australia for his rare type of leukaemia, the 56-year-old stumbled across a clinical trial in America recruiting people to test a drug called ibrutinib, which wasn’t available in Australia at the time.
The father-of-three applied for entry to the trial and was accepted.
Nearly half a decade later, he has spent more than $100,000 of his own money travelling from his home in Perth to Washington DC every 12 weeks to pick up his next dose of the life-saving medicine.
“It’s been a miracle drug for me and may well have saved my life,” he said.
“I believe I’m the only person in the world with this type of blood cancer who has achieved complete remission on ibrutinib.”
“I hope other people like me have an opportunity to try this drug as soon as possible.”
Matt says he had access to the treatment options of his choice after he was diagnosed in 2004, but each time was unable to achieve full remission.
He felt his only option left was to try ibrutinib via Australia’s compassionate access program.
However, his application was declined because “there wasn’t enough evidence to prove ibrutinib could successfully treat this type of blood cancer”.
He added: “I’m disappointed no one thought to tell me about the clinical trial in the US, or even suggest I look.
I discovered it myself on Google and contacted the trial doctors myself.
Surely, I could have been given better information about clinical trial options at that time.
“The financial and psychological impact of the relentless international travel has been substantial, and I’m very fortunate to have had the support I needed from my family to get me through it. I realise not everyone is as lucky as I am.
“If there were more clinical trials here in Australia, it would open up access for many more people and potentially make a huge difference to their quality of life.”
I took control after becoming adrift in the system
The long wait for a diagnosis took its toll on Bronwyn Bisley, but her biggest challenges lay ahead as the information she desperately needed dried up.
After feeling run-down and noticing swelling in her neck, the mother-of-three visited her doctor where a CT scan seemed to show Bronwyn had breast cancer.
It was an opinion that set in motion a significant series of events: a referral to an oncologist, more appointments and scans, biopsies and, eventually, surgery.
But breast cancer was eventually ruled out and Bronwyn was instead referred to a haematologist 200km away in Melbourne.
Bronwyn said: “Finally, about three months after my first CT scan scare, my blood cancer diagnosis arrived – by Skype.
The haematologist said I would need chemotherapy, six months leave from work and she asked if I had questions. I had absolutely no idea what to ask.
“Then I didn’t see her again for a really long time.”
Bronwyn was unsure about what lay ahead. She faced “distressing” chemotherapy sessions and debilitating side effects, felt like she didn’t have enough information or support, and had to wait two months between seeing her haematologist.
Overwhelmed, Bronwyn took the frightening decision to press pause on her life-saving treatment.
“I didn’t want to be on that factory line for months, having no discussions with my haematologist, being so sick and only feeling worse.”
Bronwyn decided to take control. She dedicated time to get the information she needed. She spoke to experts and friends and eventually travelled to Melbourne, two hours from her hometown, to meet another haematologist.
Feeling empowered and supported, it wasn’t long before Bronwyn was back having more individualised treatment in a way that better managed her side effects.
The information she gathered also saw her make positive changes to her lifestyle that helped her recovery.
The 50-year-old from regional Victoria, now back at work, said: “I never experienced those horrendous symptoms or side effects again. I was more informed, and everything became a lot better.
“It would make a huge difference if everyone with blood cancer was given the information, ideas, connections and support they needed right from the get-go.”
Personalised cellular therapy gives Hunter a future
A cutting-edge cellular therapy, made possible by breakthrough research, has given seven-year-old Hunter hope for a brighter future.
Hunter was three years old when he was diagnosed with an aggressive blood cancer, and standard chemotherapy and transplant treatments proved unsuccessful.
“We found out Hunter has a very rare chromosomal abnormality in his leukaemic cells,” explained Hunter’s mum, Kate.
“Because of that, I always knew he was going to relapse. I didn’t think it would be as early as he did, but in my hearts of hearts, I knew.”
Blood Cancer Taskforce member Dr Rishi Kotecha is Hunter’s oncologist at Perth’s Children Hospital and advocated for Hunter to receive newly approved CAR T-cell therapy at the Royal Children’s Hospital in Melbourne.
Hunter was just the tenth child in Australia to undergo federally funded, CAR T-cell therapy, only qualifying for the treatment after leukaemia cells were found in both his central nervous system and bone marrow.
“This is unlike any treatment he’s ever had before,” said Kate. “His T-cells were extracted and sent to America to be re-engineered.
We then got them back, and he was given a small 10ml syringe of these new ‘super cells’.
Even though the process of engineering the cells and having them returned is complicated, from Kate’s perspective, it was quite straightforward.
“It was relatively simple, almost too simple, but it put him into remission.”
Hunter’s dad, Dave, is adamant research is the key to making a difference for families struggling with blood cancer.
“It’s because of research Hunter has been given another chance,” Dave said.
“It means everything to people like us who have seen our son struggle through these toxic treatments for over half his life.”
“The more support we can offer to research and clinical trials, the better.”
“It’s sad Hunter had to go through the trauma of his transplant, because he only started feeling like himself again nine months after the transplant,” added Kate.
“It only took six weeks after CAR T-cell treatment to get my happy, vibrant, healthy, energetic, little boy back.”
Navigating childhood blood cancer during a pandemic
This Childhood Cancer Awareness Month, we’re celebrating little legends like three-year-old, Archer Bermingham. Archer spent nine months, hundreds of kilometres from home and across state borders, undergoing life-saving blood cancer treatment during the COVID-19 pandemic.
Hailing from Lennox Head, a small coastal town in northern New South Wales, the Bermingham family live just a couple blocks from the beach and were enjoying the first weeks of summer, swimming and playing outdoors.
“Arch had started taking day naps for the first time in a long time and we thought it was because he was so active and wearing himself out,” his mum, Claire, explained.
“He had a couple of nights when he had fevers, so I had given him Panadol and he was able to go back to sleep.
“But after a couple of days we took him to our doctor who ordered urine tests which came back negative, but his night fevers were persisting.”
The morning of his diagnosis, Claire noticed he was limping and then a tiny speckled rash had started to appear on his abdomen.
“We returned to our doctor who sent us straight to the local emergency department for blood tests and possible imaging,” said Claire.
“It was there we were advised of suspected leukaemia and Archer was transported to Brisbane that evening where it was confirmed he had B-cell acute lymphoblastic leukaemia (ALL).”
The family travelled to Queensland Children’s Hospital in Brisbane, a 360km four-hour round trip from their home across the New South Wales-Queensland border.
“Archer underwent five phases of intensive chemotherapy, achieving remission in January 2020, which was a huge relief,” Claire said.
“Initially, we were told this intensive treatment would only last four to six months, but it’s ended up being almost nine.”
“There’s only so much tiny bodies can take, and we’ve had a few delays here and there when his body just needed a little bit of time to recover.”
The family of four, including Archer’s dad, Matt, and one-year-old baby sister, Lara, stayed at a Leukaemia Foundation Patient Accommodation Village for the duration of Archer’s treatment.
“From the day after Archer was diagnosed, we had a beautiful unit to call home and that’s just meant the world to us,” said Claire.
“It’s such a beautiful community feeling with the other families. The kids can play safely and we’ve made some beautiful friends.
“It’s so nice to know we’re not alone in this, especially during this pandemic. We just wouldn’t have felt comfortable having Arch in a public hotel.
“We felt so safe there knowing that everyone else is in the same boat and taking the same precautions. It really became our safe haven.”
Archer has now completed his intensive treatment with flying colours and will start the maintenance phase of treatment, which will take 18 months.
“We have had a few teething issues getting used to dosages and the terrifying free-fall of being let loose back into the real world,” said Claire.
The family were able to return home on 10 September 2020, just in time to celebrate Lara’s second birthday.
“It’s lovely to be back home, the COVID-19 border closure had been really difficult, and we hadn’t seen our families for over month,” said Claire.
“Arch will be able to have his six-weekly reviews, blood tests and port-flushes at Lismore Base Hospital and then we have special consideration to return for Brisbane for his three-monthly maintenance treatment.
“These will just be day trips where Archer and I will only be allowed to come straight to the hospital and remain completely isolated for his treatment.
“I’ve been told this process is very strict and can be intense, but at least we can still access the treatment he needs in Brisbane. Hopefully, everything stays on track and the travel restrictions will ease soon.”
Claire has also become passionate about raising awareness of childhood cancers and the long-term effects it can have.
“There is a lot to learn. When Arch was diagnosed, I didn’t even realise leukaemia was a form of cancer and just went in so blind,” Claire said.
“You’re in a situation where you’re making really critical decisions, on not a lot of sleep and with limited knowledge.
“It’s hard to blindly trust people with your child’s life but you really have no choice.”
She has since made it her mission to learn everything she can about Archer’s blood cancer and treatment.
“I felt the tiniest bit more steady by educating myself when our world was falling apart,” she said.
“But then the reality hit me like a tonne of bricks. Although the initial diagnosis is still the worst moment of my life, I was really at my lowest a couple of months after.
“I feel like if I’d been prepared from diagnosis with the knowledge of long-term implications, it wouldn’t have come as such a hard blow when that realisation did hit.
“It’s tough because the hype has worn off from the outside world, everyone goes back to their lives but yours is changed forever and you realise you’re in it for the long haul.”
Claire’s advice to other parents is to just take it ‘day by day, hour by hour, minute by minute and keep putting one foot in front of the other’.
“Your family is stronger than you believe. Your child is stronger than you’ll ever know. And you are stronger than you give yourself credit for.”
Claire’s top tips for parents:
Trust your instincts, be kind to yourself, cry in the car, eat the chocolate.
Always, always be nice to your nurse; they will save your child more times than you realise.
Talk to other parents; no two stories are the same but no one else will truly get it.
“I remember it clearly; I had gone to see my doctor as I do every year for my annual check-up.
“This was just prior to my wife, Belinda heading on her annual overseas trip and I thought nothing of it until her return when I received a text message from my doctor to come in,” remembers the 51-year-old.
“I had an appointment shortly after where he broke the news to me that I had CLL.
“It was a fair shock; I’d obviously heard of leukaemia but hadn’t heard much about the chronic type.”
Bill called Belinda to meet at a local café straight after the appointment to process the diagnosis; “I was obviously still in shock, but Belinda was straight onto it making sure I was ok.”
Telling the kids
Breaking the news to their young daughters, Madeleine, now 20 and Katie, now 16 was even tougher on the couple.
“That was probably the hardest thing, they were both just 16 and 13-years-old at the time and we had only just lost my own father to prostate cancer,” said Bill.
“I remember that day very clearly – we sat them around the kitchen bench and just told them, ‘Dad’s got leukaemia, it’s a type of blood cancer’.”
“Their facial expressions changed completely, and we had to back-track quickly saying how it was entirely manageable and we were only really telling them to keep them in the loop.
“Kids will often be the first to pick things up when something is wrong, so we wanted to make sure we were honest with them and they knew before the rest of our family and friends.”
Anxious for answers
Living in a small rural town called Moama in southern New South Wales, Bill was facing a six month wait to get reviewed by a specialist.
Anxious for answers, Bill instead sought a referral to a CLL specialist in his old hometown of Geelong, Victoria where he had worked as a nurse.
“Thanks to Belinda, I got in within a couple weeks and I actually knew the specialist from when I worked in the hospital,” explained Bill. “We have a really wonderful and comfortable relationship,”
“He walked me through how people living with CLL can still lead very full and happy lives and more times than not you will die from something other than the blood cancer.
“I was put on ‘watch and wait’ as my cancer is stable for the moment and I will just continue to have six-monthly check-ups and blood tests down at Geelong to monitor my levels.”
While life goes on for Bill, the burden of living with a chronic blood cancer can still weigh heavy at times and he has accessed support through the Leukaemia Foundation.
“As nurses, my wife and I are always telling our own patients the importance of accessing help should they need it and the many wonderful services that are available,” said Bill.
“I took my own advice just after my diagnosis and rang the Leukemia Foundation where I was put on to my own Blood Cancer Support Coordinator.
“That’s really helped me along the way to find my feet and feel comfortable with the fact that I could be living with this disease for the rest of my life.
“I think I would’ve been completely lost without that additional support and guidance.
“I obviously have amazing support from my friends and family but the Leukaemia Foundation staff have that specialised understanding of the disease and that neutral voice that can help keep you grounded.
“I’ve also attended Leukaemia Foundation support groups at Shepparton in Victoria and another small town close to Moama called Echuca.
“It’s great to talk to others going through the same thing and connect on how everyone is managing their blood cancer.”
Hosting Light the Night
Bill has also hosted the Moama-Echuca Light the Night event for the past few years, enjoying the chance to give back to the blood cancer community.
“The whole family gets involved, my daughters’ school help to get volunteers and with the fundraising,” said Bill.
“They have a whole bunch of friends come along on the day and help me in the lead up.
“It’s also a fantastic way to get the community together. Belinda and I previously managed a hotel in Moama so we have great contacts and networks to get the fundraising going.
“It’s held right on the river there that marks the border of New South Wales and Victoria.
“The lantern ceremony is always really special, and we all walk over the bridge and then back again acknowledging those conquering blood cancer in not just one, but two states.”
Due to the COVID-19 pandemic, the family will be taking part in Light the Night at home this year.
“We will be participating ‘COVID-19 style’, most likely at home around our fire pit and hopefully we can have some family and friends around.”
“Belinda has also put in a great effort making a number of face masks during August for our Light Night fundraising this year,” said Bill.
“They were all sold out in a day and we asked people buying the masks to donate to our Light the Night fundraising page.”
Advice for other dads
Bill is now firmly focused on the future, keeping an eye on his health to be there for his family and he encourages other dads to do the same.
“I know for many blokes, health and going to the doctor can often become a last priority,” said Bill.
“Who knows what could’ve happened if I hadn’t made that annual check-up, I would still be living in ignorance and not managing my blood cancer.
“You need to think of your family first and foremost and make sure you’re healthy for them.”
Survivor Eleanor proving a gift in Will is ageless
Before undergoing her life-saving transplant at just 23-years-old, Eleanor Colla made a lasting commitment to the blood cancer community through her gift in Will.
Eleanor was diagnosed with an aggressive leukaemia in September 2012 while travelling through South East Asia.
“I was travelling through Nepal and thought I had food poisoning,” said the now 30-year-old.
“After a week of sickness, I went to a travel clinic and the first question they asked me was if I had travel insurance – luckily, I did.
“They did a blood test thinking it was typhoid but instead picked up that I had no white blood cell count.
“My first thought was ‘my blood is red why would I need any white cells?’”
Eleanor was medically transferred to a hospital in Thailand and after a week she was diagnosed with leukaemia.
“I spent 10 days in Thailand and all I ever saw was the hospital,” said Eleanor.
“My leukaemia was actually found cellularly and hadn’t even spread beyond the bone marrow when I was diagnosed so it was very early days.
“I don’t believe it would’ve been picked up if I was back home in my normal environment, just working and going to uni.”
Eleanor and her mother, who had flown to Thailand, returned immediately to Melbourne.
“The Thai hospital sent all my documentation and it was confirmed that I had acute myeloid leukaemia (AML),” remembered Eleanor.
“I started treatment on the 20th September 2012 with my first round of induction chemotherapy.
“It was at the hospital that I first met the Leukaemia Foundation staff who offered up a range of services.
“It was great to be connected with that blood cancer community and my family accessed practical support in the way of petrol and shopping vouchers which was really helpful.”
After her second round of chemotherapy it was confirmed that Eleanor had a gene mutation on her leukaemia cells called FLT3 and she would need a transplant.
Between 20 and 30 percent of people with AML have this mutation. The FLT3 gene codes for a protein called FLT3 that helps white blood cells grow. A mutation in this gene encourages the growth of too many abnormal leukemia cells.
“Essentially, my bone marrow didn’t do anything wrong,” explained Eleanor. “It’s just programmed to create cancerous cells, so it was a bit of bad luck.
“I was told 50% of people don’t survive the first 30 days after transplant but I 100% wouldn’t have survived without it – I figured I was doubling my chances.”
Before her transplant Eleanor hosted a ‘transplant party’ with friends and family.
“I signed my Will at that party, one of my aunts worked in legal assistance and had brought the document over,” said Eleanor.
“It was highly recommended to have a Will prior to the transplant.
“It’s very practical thing to do and I’m a very practical person.”
“I think my mother suggested leaving a gift to the Leukaemia Foundation and that seemed very natural to me.
“I very much liked the idea of supporting a blood cancer charity and if I didn’t make it, hopefully my gift would mean someone else would.
“The process wasn’t onerous; both my parents have wills and knew people who could sort it out for me.”
Eleanor is aware that she is not what many people a consider a typical gift in Will supporter, but she would encourage more younger people like herself to consider the option.
“I think it’s quite intimidating for younger people as it’s often pitched as this scary legal thing with unfamiliar language,” she said.
“I’d encourage people to just have the conversation, to get the trusted information and a checklist together which is available through the Leukaemia Foundation.
“A number of my friends have now got their Wills in order because of what I have gone through, but it shouldn’t have to come to that.”
Eleanor received her bone marrow transplant from a German unrelated matched donor in February 2013.
“After the required two years we were able to connect and have since met up twice which was really nice,” said Eleanor.
“There was never any doubt in my mind that we would meet, and I actually started learning German.”
While the transplant was tough, Eleanor bounced back quickly returning gradually to everyday life with a few lasting side-effects.
“I’ve had a bit of graft-versus-host-disease (GVHD),’ explained Eleanor. ‘This presents as tendonitis in the hips so sometimes walking can be difficult. I also get bad nausea and need to keep an eye on my low platelets.
“The first two years it was every day but now it’s maybe once or twice a week so very manageable.
“I still have annual check-ups and can easily contact my medical team if I ever need to.”
After her transplant, Eleanor resumed university and obtained a postgraduate degree, in Information Management.
She is now working as a tertiary librarian in New South Wales.
“I really love my profession and feel very proud that after everything I have been able to re-enter society and regain my independence.”
Eleanor feels contented that her wishes have been made clear through her Will and that the Leukaemia Foundation will be able to support people living with blood cancer well into the future.
“I haven’t stipulated in my Will that the funds should be used for anything specific but just leave it up to the Leukaemia Foundation to disperse as needed,” said Eleanor.
“What organisations actually need is continuous ongoing support not just a one-off dump of money.”
Eleanor and her parents have participated in supporter seminars, receiving information and updates about the impact of their support from Leukaemia Foundation staff and leading researchers.
“As my work is research adjacent, I have a real interest in how the Leukaemia Foundation manages priorities there,” said Eleanor.
“The sessions were really informative, and it feels good to have that active engagement with an organisation which you know first-hand can make a real difference in people’s lives.”
Eleanor is now firmly focused on the future, enjoying her ‘dream job’ while continuing to manage the long-term effects of her treatment.
“I feel very lucky to have the opportunity to do something I love every day and know that is down to the many wonderful medical staff, researchers and organisations like the Leukaemia Foundation who supported me through my blood cancer experience,” said Eleanor.
“I am really proud that my gift will allow that same sort of support to continue well into the future.”
Leave a Gift in Will
If you would like to know more about leaving a gift in your Will, or if you have questions about the process, please don’t hesitate to contact Gift in Will Officer, Emma Quigley on 07 3318 4459 or at email@example.com.
Please seek professional legal advice before making or amending your Will.