Welcome to my occasional bulletin on stem cell science and the activities of the new National Stem Cell Foundation of Australia.
I've been both excited and concerned to see stem cell stories in the media this year.
The Foundation has enjoyed the media attention following our launch. But we've also been alarmed by the growing number of reports of people travelling overseas for unproven treatments and the explosion of clinics, here in Australia and overseas, offering treatments using stem cells derived from fat cells.
It reminds us of the importance of our work informing the community and supporting the research that leads to evidence-based medicine.
The Foundation's first funded researcher, Dr Kathryn Davidson, has settled in and is working hard with her new colleagues at the Centre for Eye Research Australia.
Our community education efforts are also well underway. The Foundation is sponsoring a free public forum on diabetes and stem cells, with further events and an information handbook planned for later in the year.
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Dr Graeme L Blackman OAM
Chairman, National Stem Cell Foundation of Australia
A story from the Nine Network's program A Current Affair has sparked expert warnings for patients to be wary of 'medical miracle' stories in the media.
In February, A Current Affair broadcast 'Miracle Mum', a story about an Australian woman who travelled to India for an aggressive and controversial treatment for multiple sclerosis (MS), involving stem cells, bone marrow transplantation and chemotherapy.
The introduction to the story promised that after this "controversial treatment", this mum was "drug free, pain free and back walking again".
"That a treatment appears to have helped one patient does not necessarily mean it will work for everyone," says physician and chair of the Foundation's Scientific and Ethics board sub-committee Dr Christopher Juttner.
"This is particularly the case with bone marrow transplantation to reset the immune system in people with MS. Clinical trials are at an early stage, with some promising results, but only for a very specific sub-group of patients."
An estimated 23,000 Australians have MS, which affects the central nervous system. There are several types of MS and its course can be unpredictable. Because of the diversity and unpredictability of the disease, there is no 'one size fits all' treatment.
"Television stories like this are simply too short to convey the complexities and challenges of both MS and stem cell therapies," says Christopher. "I'm concerned they might raise the hopes and expectations of vulnerable people, particularly since unproven fat stem cell treatments are now being offered in Australia."
"While we have great hope for regenerative medicine in the treatment of MS and other diseases, much more research and clinical trials are needed to ensure treatments are as safe and effective as possible."
Christopher says that, while television shows can be interesting, people with MS should get treatment information from their treating neurologist or respected patient advocacy organisations, like MS Australia.
In response to the story, MS Australia released a statement to put the story into context:
"In Australia, less than 40 people with MS have received bone marrow transplants to treat active, highly aggressive cases of MS. Internationally, only a few hundred patients have been treated this way. The outcomes have been mixed and the treatment is considered experimental.
"As a high-risk, unproven treatment, it is currently only considered by some doctors and hospitals for those who have an early, aggressive form of MS that is resistant to all other treatments."
Read the full statement from MS Australia
Watch the original A Current Affair story
A Nature news feature about a Texan biotechnology company offering unproven and expensive therapies has sparked a debate about how stem cells should be regulated in the United States.
But even in Australia, these same stem cell therapies, using the patient's own cells, are increasingly being offered for conditions ranging from osteoarthritis, to MS, motor neurone disease, stroke and autism in children.
Ann McFarlane told Nature she spent US$32,000 on MS treatments using infusions of stem cells grown from her own fat tissue, extracted via liposuction. She had been told she was part of a study to test the cells' efficacy. Treatments like these have not been approved by the US Food and Drug Administration.
This process is an example of autologous stem cell transplantation- stem cells are removed, manipulated and given back to the same person. The idea of using 'one's own cells' is appealing, but, aside from bone marrow transplantation in the treatment of blood cancers, it is currently unproven and unregulated.
Despite this, a growing number of clinics are offering these therapies in the United States and here in Australia, and patients who would never consider travelling overseas for experimental treatments are choosing what they believe to be a safer option at home.
"For many years we have been concerned about 'stem cell tourism', but now it seems that many of the same criticisms can be levelled at clinics operating in Australia," says Associate Professor Megan Munsie, head of the Education, Ethics, Law and Community Awareness Unit at Stem Cells Australia. "Just because it's happening here doesn't mean the treatments are safe and effective."
Unlike stem cell therapies using donor cells, autologous therapies provided by registered Australian medical practitioners do not need to comply with the stringent regulations set out by the Therapeutic Goods Administration. And typically, these clinics market themselves using the power of the anecdote - the relatable, 'human' story, rather than clinical trial data.
"The treatments that are being offered are not cheap, and while the promises can be alluring, the therapies being offered remain highly experimental. Patients considering such therapies really should think twice, gather the facts, and consult their treating specialist for some independent advice on the merit of proposed therapies" says Megan. "The question really is 'where is the evidence?'"
As part of our efforts to provide information for informed choices, the Foundation is working with Stem Cells Australia to produce an updated handbook for people considering stem cell therapies, both here and abroad. The new handbook will be published later this year.
Kathryn Davidson, the Foundation's first grant recipient, is settling down after being cast into the media spotlight on her eleventh day as a new recruit at the Centre for Eye Research Australia (CERA).
Kathryn said highlight of the launch for her was meeting patient advocate Michelle Kornberg.
"I chose this position at CERA because I wanted to work on more translational research, where you're closer to seeing the difference it can make in people's lives," she said.
"I was really moved by what patient advocate Michelle Kornberg said at the launch about her experiences with macular degeneration and her hopes for our research. She represents the patients we ultimately hope to benefit, so it was special to meet her."
Kathryn's work involves obtaining skin cells from patients with age-related macular degeneration, turning them into stem cells and then new eye cells for further study.
Kathryn completed her PhD in Australia, then spent several years doing postdoctoral research at the University of Washington. The Foundation grant allowed her to return to Australia and take up her new position at CERA in the Neuroregeneration Research Unit, led by Dr Alice Pébay.
"I was overwhelmed by the warmth and enthusiasm at the launch," says Kathryn. "It was great to reconnect with Australian stem cell research colleagues from my PhD days and meet new colleagues and stakeholders too.
"I'm just so grateful to the Foundation, both for funding my position and for giving me an opportunity to share my research with a broader audience."
Kathryn was interviewed by many journalists after the launch. She was featured on Melbourne radio station 3AW, on SBS, and in a dozen newspapers across Australia and internationally.
Some of the media highlights include:
Kathryn isn't the only rising star at the CERA Neuroregeneration Research Unit.
Research assistant and PhD candidate Duncan Crombie has received the prestigious NHMRC Gustav Nossal Scholarship for his stem cell-based research into the genetic disease Friedreich Ataxia (FRDA), a disease of the nervous system and heart that also affects vision.
Like Kathryn, Duncan's research uses patient skin cells to produce stem cells, which are then grown into eye cells. Duncan will study these and similarly derived heart cells to better understand FRDA.
"Australia is fortunate to have such promising stem cell research talent," says Foundation Chairman Dr Graeme Blackman. "On behalf of the Foundation, warm congratulations go to Duncan for this great achievement."
The NHMRC provides several postgraduate scholarships to medical, dental and health research students. Each year, the highest ranked applicant from the combined Medical and Dental Postgraduate Research Scholarship applications is awarded the Gustav Nossal Research Scholarship.
More on Duncan's Scholarship
There is hope that one day stem cells may help us treat type 1 diabetes, which represents 10-15 per cent of diabetes cases in Australia and, unlike type 2 diabetes, can't be prevented through better diet and lifestyle choices.
But what is actually involved? How close are we to it being a reality? The Foundation is sponsoring a public forum to bring experts, patients and stakeholders together to answer these questions.
It's an opportunity for patients to have their questions answered, and for researchers to meet the people who could benefit from their work.
Leading local and international scientists and clinicians will discuss the latest stem cell developments targeting type 1 diabetes, including research on a therapy to allow insulin production in the body and a potential preventative treatment using cord blood.Patients and researchers are welcome to join us at the forum, which is being held in conjunction with the Bio21 Cluster Stem Cells Australia Scientific Symposium. Register and reserve a place at the forum online.
When: 5.45pm - 7.15pm, Thursday 16 May
Where: Auditorium, Melbourne Brain Centre - 30 Royal Parade, Parkville
Speakers and topics:
This two-day Melbourne scientific symposium explores the achievements and challenges of translating stem cell science into clinical practice.
Who should attend?
You'll also have the chance to network with colleagues and join public events, including the Foundation's forum on stem cells and diabetes.
When: Thursday 16 May and Friday 17 May
More details, including registration here
Browse the full program (PDF - 213 KB)
Cancer is Australia's leading cause of the burden of disease* [PDF 3.9 MB] and the 'sunburnt country' has the highest rate of melanoma in the world.
A renowned British skin cancer expert visited Melbourne this month to present her pioneering research into skin stem cells and their role in cancer.
Professor Fiona Watt is Director of the Centre for Stem Cell and Regenerative Medicine Research at King's College London.
"I'm interested in exactly what goes wrong in skin cancer," says Fiona. "We have found new 'markers' that can be used to identify skin stem cells. By studying these molecular cues, we can learn more about the complex interplay that control decision-making in skin."
Fiona was in town for the Stem Cells and Cancer Symposium 2013, where stem cell and cancer experts came together to exchange research, ideas and insights. Researchers discussed the roles stem cells might play in causing, curing and understanding cancer.
"It was a privilege to have Professor Watt in Australia," says Professor Martin Pera, convenor of the Symposium and Chair of Stem Cell Science at The University of Melbourne. "Her research over many years has provided unique insight into the sophisticated mechanisms that control normal stem cell renewal in the skin, and how these control mechanisms are hijacked by cancer cells."
Delegates also heard presentations from Professor Jane Visvader from WEHI, Professor Martin Pera, Professor John Rasko from the Centenary Institute, Dr Pritinder Kaur and Dr Mark Shackleton from Peter MacCallum Cancer Centre, Dr Samir Taoudi from WEHI, Dr Renea Taylor from Monash University and Dr Nic Waddell from the University of Queensland. The Symposium was co-hosted by Stem Cells Australia and industry partners Abcam and Sapphire Bioscience.
*Australian Institute of Health and Welfare & Australasian Association of Cancer Registries 2012. Cancer in Australia: an overview, 2012. Cancer series no. 74. Cat. no. CAN 70. Canberra: AIHW.
Between newsletters, we share stem cell news on social media:
Here are a few of the stories we've shared recently:
The Age: Stem cell tourists living in hope: study
Naples Daily News: State medical board revokes license of stem cell doctor
Manilla Bulletin: Philippines Department of Health to crack down on unaccredited stem cell establishments
Japan Daily Press: Riken Institute to use induced pluripotent stem cells for macular degeneration trials
Knoepfler Lab: Cow stem cell fraudsters sent to jail for almost killing human patients: some patients still support them
The Foundation is a legacy of the Australian Stem Cell Centre, Australia's first biotechnology Centre of Excellence, which wrapped up when its funding ended in 2011.
We felt that the outreach and research support work the Centre did was important, so we've established the Foundation as a charity to continue that work.
During its nine years of operation, the Centre was fortunate to receive many donations and bequests. When the Centre closed, their board and stakeholders agreed to transfer the residual funds to the Foundation.
Through the new Stem Cell Foundation, we'll continue to invest these funds in public education and research efforts. We also hope to build a community of people with a stake in stem cell science and to promote collaboration between scientists locally and internationally.
Please feel free to contact us at email@example.com
We're keen to build a community of people with a stake in stem cell science to educate the community and support patients, clinicians and researchers. Feel free to pass this newsletter on to anyone who might be interested.
If you have comments, questions or news you think might be of interest to the stem cell community, we'd love to hear from you. Drop us a line on firstname.lastname@example.org
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