New Drug Offers Hope to Kidney Cancer Patients

The Federal Government recently announcedthat OPDIVO (nivolumab) has been added to the Pharmaceutical Benefits Scheme as second-line treatment for patients with advanced (stage 4) clear cell kidney cancer.

Kidney cancer is the 9th most common cancer in Australia with around 3,500 people diagnosed every year. Clear cell carcinoma is the most common form of kidney cancer, and accounts for approximately 75% of kidney cancer cases. 

By the time it gets to an advanced stage, kidney cancer has spread widely outside the kidney, to the abdominal cavity, the adrenal glands, distant lymph nodes or to other organs, such as the lungs, liver, bones or brain. Sadly, this stage of cancer is unlikely to be cured, however treatments can help to make life as long and as normal as possible for patients.

While surgery is usually the first course of treatment for those with kidney cancer, unfortunately it does not cure people with advanced kidney cancer, meaning additional pharmaceutical treatment may then be recommended. This is also true of patients who have undergone surgery, only to have the cancer recur.

Pharmaceutical therapies include ‘tyrosine kinase’ inhibitors (TKIs) and ‘mammalian target of rapamycin’ (mTOR) inhibitors. More recently, immunotherapies have also become an option. These therapies have revolutionised the treatment of advanced cancers by turning them into more of a manageable ‘chronic disease’and prolonging life expectancy.  

At Kidney Health Australia, we often hear from frustrated patients in Australia who are aware of immunotherapies but do not have access to a subsidised, government supported treatment option (such as those available in the United States and major European countries), even though they have clearly shown to be effective in improving their outcome and quality of life.

As the peak body for kidney disease, Kidney Health Australia has advocated for an effective, alternative, and equitable treatment option for people with advanced kidney cancer in Australia, which should include listing such drugs on the PBS so they are accessible and affordable for all patients. We are delighted by this recent development, and commend the Federal Government for recognising this crucial need and approving the PBS listing quickly.

If you or someone you love has advanced kidney cancer, we urge you to discuss your suitability for OPDIVO with your doctor–access to this treatment via the PBS could have a significant impact on your quality of life, without the financial burden. For more information on this treatment visit OPDIVO.

Do you have kidney cancer questions, or just need to talk to someone who is informed and empathetic? You can contact Kidney Health Australia’s ‘Kidney Health Information Service’ (KHIS) any time by calling 1800 454 363, or emailing khis@kidney.org.au to speak to a trained healthcare professional.

Learn more about kidney cancer through our fact sheets here

 

 

 

Melbourne Ice Turns on Warm Welcome for Kidney Kids

Brothers Joel and Mitchell Sullivan with Melbourne Ice’s Bobby Lipsett


The ice might have been cold and slippery, but Melbourne Ice laid on a warm welcome for the kidney community at O’Brien Group Arena in Melbourne’s Docklands last Sunday, 6 August.

More than 100 membes of the community attended the event and for many it was their first time at an ice hockey match.

It was a double-header weekend for Melbourne Ice as they lined up against reigning Goodall Cup champions Newcastle North Stars. On the Saturday, Melbourne Ice came back from a 2-1 deficit to win 7-4 win.

They turned it on again for their special guests, the Kidney Kids, on the Sunday, with a winning margin of 4 to 1.

Kidney Health Australia has been in a partnership with Melbourne Ice for the past three months and Sunday’s event was a chance to celebrate our new relationship.

Joey Hughes catches up with Kidney Kids and friends

Joey Hughes catches up with Kidney Kids and friends

 

 

Jade Commerford drops the puck to get the match underway 

 

Triple kidney transplant recipient Jade Sandison with Melbourne Ice player Joey Hughes

Triple kidney transplant recipient Jade Sandison with Melbourne Ice player Joey Hughes

 

Billy the Kidney cuddles up with KHA’s Tracey Matters

Billy BIlly the Kidney cuddles up with KHA’s Tracey Matters

DonateLife Week 2017

During DonateLife Week 2017 (Sunday 30 July - Sunday 6 August) DonateLife invites all Australians to make their decision count by joining the Australian Organ Donor Register.

Led by the Organ and Tissue Authority, DonateLife Week is a key part of the Australian Government’s national reform program to increase organ and tissue donation and transplantation outcomes.

The aim of increasing the number of registered donors was given added support with last week’s launch by the Minister for Aged Care and Indigenous Hon Ken Wyatt AM, MP of the new online donor registration form at donatelife.gov.au.

Thanks to the new registration form at donatelife.gov.au, it is now faster and easier than ever to register on the Australian Organ Donor Register.

As part of the announcement of the new online registration form, Minister Wyatt also announced the Australian Football League (AFL) – DonateLife partnership. This partnership is a key part of the Australian Government’s national donor online registration campaign. The partnership with the AFL and AFLW will directly contribute to the online donor registration campaign by driving consistent and frequent messages across multiple channels and platforms, including during DonateLife Week.

More than 90 events and activities have been registered for DonateLife Week 2017, such as community BBQs, morning teas, sports events, and much more. To keep up to date with events, visit the DonateLife events page.

Today more than 1,400 Australians and their families are waiting for a life-saving transplant. If you are willing to one day save lives by becoming an organ and tissue donor, register, and discuss your decision with your family and friends. Register at donatelife.gov.au.

New Partnership with Softball Australia

Kidney Health Australia has recently become Softball Australia’s charity of choice.

Australia's softball history began in 1939 when Gordon Young, Director of Physical Education in NSW, began to promote the game in schools and colleges. Softball has been a major sport in the schools program for some time now and it is estimated that more than 250,000 children play the game.

Eight Australian Championships are played each year: Women's, Men's, Under 23 Women and Men, Under 19 Women and Men, and Under 16 Girls and Boys. No matter how old you are or what your skill level is, Softball Australia has something for everyone.

Softball Australia and Kidney Health Australia share common goals: to promote a healthy lifestyle through sport and to help prevent kidney disease. With that in mind, the two organisations have joined forces to boost awareness about the benefits of living a healthy and active lifestyle.

With 1 in 3 Australians at increased risk of kidney disease, our health message can now be shared with a large audience of softball players and supporters. 

We thank Softball Australia for their support and look forward to working together.

For more information visit www.softball.org.au.

Important Information about Scams and Illegal Kidney Transactions

By Dr Campbell Fraser

Online patient support groups are an invaluable resource for people living with kidney disease.  Sadly, throughout the world, criminal gangs attempt to abuse these resources in order to lure vulnerable patients with promises of a kidney transplant overseas. 

Many online advertisements offering kidneys for sale are scams.  Several patients have lost thousands of dollars after sending money overseas as pre-payment for what they believe to be a kidney transplant. After electronically transferring funds, the “brokers” disappear and the money is lost forever. Some patients have lost over $100,000 by becoming involved with these scammers.

Even if the offer of an overseas transplant turns out to be genuine, you should remember that in almost all countries in the world, it is illegal to buy or sell a kidney.  Get caught and you could well find yourself with a long sentence in an overseas prison.

Kidney transplants in illegal clinics overseas also have very poor clinical outcomes. This is because:

  • Surgeons performing these transplants are often not qualified to perform complex procedures.
  • The transplant will likely be performed a small makeshift clinic lacking even the most basic surgical facilities.  These backstreet clinics offer no aftercare support, and provide no documentation regarding the origin of the kidney. They discharge patients as quickly as possible in order to avoid detection from authorities.
  • Patients are often detained in squalid conditions by the broker until the day of surgery, and they usually don’t know the name of the hospital or surgeon until the transplant takes place.
  • Patients are typically smuggled into the hospital, and the transplants performed during the night to avoid being caught.
  • These clinics care only about making money. They have no concern whatsoever regarding the success of the procedure.
  • Organs used will probably not have been checked for infectious diseases–patients have been known to contract HIV after receiving an infected kidney during an illegal transplant. There have been many patients who have died from infection following illegal overseas transplantation.
  • Kidneys are often not well matched to recipients, and due to surgical complications, patients may ultimately have to have their transplanted kidney surgically removed when they return home. 
  • Brokers usually keep asking for more money, even after the agreed sum has been paid.  There are many reports of patients being denied essential medication unless they pay exorbitant fees to obtain them.

Illegal overseas transplants are not just bad news for the potential recipient.

Kidneys are generally obtained from people who have trafficked far from home then forced into selling. They are often in a state of very poor health, and would never have been accepted to be a live kidney donor program in a legal transplant centre.

Sellers receive only a tiny fraction of the money you have paid, and almost always paid much less than they were promised. For this reason, kidney sellers will often beg for more money from patients after the transplant is completed.

The kidney will have been removed from the seller using crude surgical methods, which can result in lifelong disability for them. The seller is typically discharged without any follow up care, and they frequently develop serious infection shortly after.

Sometimes, illegal transplant clinics also use deceased donor organs that do not meet quality standards required by mainstream legal transplant centres, and this inevitably lead to very poor outcomes for patients who receive them.

The money raised from organ trafficking is frequently used to fund criminal organisations, and more recently, evidence shows that in some countries it is a major fundraising activity of terrorists.

If you are approached by someone online offering you an overseas kidney transplant–report it immediately.

Dr Campbell Fraser is a Senior Lecturer in the Department of International Business and Asian Studies, Griffith Business School, Griffith University, Brisbane. His main area of interest is in the international human organ trade, and he travels extensively to engage with those who have been trafficked for their organs and liaise with health authorities, NGOs and law enforcement agencies leading the fight against human trafficking.

Campbell is a member of the Declaration of Istanbul Custodian Group, an international organisation tasked with combating transplant tourism. His work with this group involves advocating for the planning, development and implementation of anti-trafficking strategies throughout Asia.

Campbell is himself a kidney transplant recipient, and has first-hand experience of waiting for a donor organ to become available. It was through this journey that he developed his interest in organ donation and the illegal organ trade.

New Partnership with Melbourne Ice

Kidney Health Australia recently became the Charity and Volunteer Sponsor of Melbourne Ice Hockey Club.

Melbourne Ice are a semi-professional ice hockey team in the Australian Ice Hockey League. The alliance provides the chance for exposure and fundraising at home games and other key club events, as well as the opportunity to be part of their Ice Business Club, providing networking opportunities with other team sponsors.

With 1 in 3 Australians at increased risk of kidney disease, our health message can be shared with a large audience of passionate ice hockey fans and members.

The team plays its home games at the O'Brien Group Arena in Melbourne, and we encourage our kidney community to come along to a game and show their support.

View Melbourne Ice game fixture here. 

See details about 'Social Softball for Kidney Health' fundraising game on 30 October in Melbourne here. Everyone is welcome to join in!

New Clinical Director joins KHA

Image courtesy of The University of Adelaide

Kidney Health Australia warmly welcomes new Clinical Director, Dr Shilpa Jesudason, who officially joins Kidney Health Australia this month. Dr Jesudason will be a great asset to Kidney Health Australia. She is warm and compassionate, an experienced clinician, educator and researcher, with a patient-focussed understanding of the impact of kidney disease on Australians.

Dr Jesudason is a dedicated nephrologist and will be instrumental in our work to save and improve the lives of Australians affected by kidney disease. She will provide strategic advice to the organisation, and engage with patients, carers, and the nephrology community on behalf of our organisation and stakeholders.

Dr Jesudason has been specialising in management of pregnancy-related issues in women with renal disease, including all stages of chronic kidney disease; dialysis and transplant patients; living kidney donors and women with hypertension.

Dr Jesudason is based in Adelaide and will continue her consultancy work in Adelaide renal centres and hospitals, as she also forges a strong path at Kidney Health Australia.

* Image courtesy of The University of Adelaide.

MasterChef Cooks up for Kidney Health Australia

Masterchef visits South Melbourne

Kidney Health Australia and South Melbourne Market was featured on an exciting episode of MasterChef this week, as 16 MasterChef contestants cooked up a feast for hundreds of market-goers.

During the filming earlier this year, we opened our Kidney Health Australia headquarters located on Cecil Street, across the road from the markets to the MasterChef production team. MasterChef was so touched by the kidney health cause, that they donated a total of $13,728 to our national kidney charity!

The MasterChef donation was the total of the sales money made by the contestants, who were split into teams of four and given the challenge of making as many street-style dishes as possible.

Kidney Health Australia CEO, Mikaela Stafrace, thanked MasterChef and all the contestants for a great episode and for the donation, which will go to supporting Australians affected by kidney disease.

Ms Stafrace said it was fantastic that such a prominent show like MasterChef had chosen to highlight kidney disease, which affected 1.7 million Australians. “There’s still a gap in understanding within the wider community of the critical role kidneys play in our health, such as filtering toxins out of our blood. When our kidneys shut down, our bodies shut down.”

“It was great fun to have the MasterChef crew on board for the day and we look forward to watching the rest of the MasterChef season. The wonderful fresh produce often used in the show encourages all Australians to cook healthy meals, which benefits our kidney health and overall well-being.”

MasterChef is produced by Endemol Shine Australia for Network Ten—airing 7.30pm AEST, Sunday to Thursday. To view previous episodes, including the South Melbourne Market challenge visit tenplay.com.au.

Thank You for Your Support in 2016

This year at Kidney Health Australia has been a time of change and growth. In 2016 we’ve had an opportunity to view how we can best continue to support Australia’s kidney community, as well as advocate and educate the community and all Australians.

You’ll hear more over the next few months about an exciting new initiative, in which we will invite you, our kidney community, to provide direct feedback to us.

We’ve also been looking at how we can strengthen key events and I’m happy to announce that in 2017,  to align with World Kidney Day, our own Kidney Health Week will be held across 5–11 March; World Kidney Day will be held on 9 March.

Our passion and vision to improve the lives of people affected by kidney disease, to raise awareness, advocate for programs and policies, and support important research, remains stronger than ever. 

Thank you to all the Kidney Health Australia staff and volunteers who have worked so hard this year and to the kidney community for your invaluable support. Our key fundraising and awareness events, such as the Kidney Kar Rally and the Kidney Health Research Walk were great successes in 2016, and a testimony to the absolute commitment of you all.

On behalf of everyone at Kidney Health Australia, I’d like to wish all the very best for a Merry Christmas and a safe and happy New Year.

Mikaela Stafrace
CEO
Kidney Health Australia



Five Steps to Good Kidney Care

kidney health vitamins

What can you eat and drink when you have kidney disease, to stay as healthy as possible? All kidneys need a diet that is low in salt and sugar to be as healthy as possible. As kidney disease progresses, extra diet and fluid restrictions may be needed to keep a person living with kidney disease healthy. Here are some tips on how to take charge of kidney health and nutrition following diagnosis and beyond.

1.      Learn about a healthy diet for you

Working with a dietician is advisable if you need to lose weight, or if your doctor recommends that you need to change your fluid, phosphate, protein or potassium intake. Getting expert advice on what to eat and drink from expert will take a load off your mind and also ensure your individual needs are met. Speak to your doctor about getting a referral to your preferred local dietitian.

2.          Your first appointment with a dietitian

Before your appointment, write down what you eat daily and take the list with you. Take a list of your medications. If someone else normally cooks for you, ask them to go with you. Prepare and ask questions so that you feel confident about what you need to do, and why. Organise regular follow-up appointments to monitor your progress.

3.      Kidney-friendly foods and what to avoid

As your kidney disease progresses, your doctor may recommend you change your intake of protein, phosphate, potassium, sodium/salt and fluids. For example too much salt and fluid may cause high blood pressure, swelling of ankles, feet, hands and puffiness under the eyes, shortness of breath and increased protein in urine.

Foods that have a lot of sodium include seasonings, sauces, canned foods and some frozen foods, processed meats, snack foods, stock mixes and packaged soups and take-away food. Beware of salt substitutes as some contain potassium instead of sodium. You can find kidney-friendly recipes in our resources library.

 4.     Maintaining a healthy weight

Weight loss and weight gain can be major issue when trying to look after yourself and your kidneys. Obesity may cause complications for dialysis causing unsuitability for a kidney transplant. Your dietitian can help you maintain a healthy weight, with kidney vitamin supplements and ways of preparing food that will be palatable, no matter if you feel ill, or expereince a loss of appetite. 

5.     Vitamins, minerals and supplements

Your usual vitamin regime may not be adequate or suitable once you have been diagnosed with kidney disease. Speak to your kidney health team about whether a multivitamin, such as KidneyVital, might be helpful for you.

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I’m a carer for a 74 year old patient with kidney disease, who has been on peritoneal dialysis for over a year now. His kidney specialist recommended Kidney Vital and we have definitely noticed benefits; we would not want to stop taking it. I would definitely recommend this product to other people with kidney disease.

Lynette, NSW

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Formulated by kidney specialists specifically for people living with all stages of kidney disease, KidneyVital contains the correct daily doses of essential vitamins and minerals - and excludes those that can be toxic for kidney patients - in one tablet. KidneyVital can be purchased online, or by calling 1800 454 363.

Kidney Health Australia Welcomes New CEO

On behalf of Kidney Health Australia’s Board of Directors, I’m delighted to announce that Ms Mikaela Stafrace will be joining our organisation as Chief Executive Officer next week.

Mikaela has most recently led charity organisation, Melbourne Legacy as CEO, and has previously been a partner in a national law firm and run her own practice specialising in regulatory compliance and risk management. She has also served on a number of boards including Melbourne Olympic Parks Trust, Inner South Community Health Service and the Victorian Veterans Council.

It is this extensive experience and strategic focus, along with Mikaela’s passion to make a difference in the health care charity sector, which makes Mikaela the right person for our CEO role and driving the future vision for Kidney Health Australia.

It is an exciting time of growth and new ventures for the organisation as we review and refine our priorities and strategic direction, in-line with our guiding pillars of education, advocacy, research, and support. These are the foundations upon which Kidney Health Australia has built a rich history, and from which we have served our ‘kidney community’ for over 46 years.  I am confident that the organisation will build upon these key areas and thrive under Mikaela’s new leadership.

The Board, Senior Management Team, and staff of Kidney Health Australia are thrilled to welcome Mikaela into the KHA family. We look forward to successfully working together – along with our ‘kidney community’ – to continue to save and improve the lives of the 1.7 million Australians affected by kidney disease, as well dramatically increase awareness levels amongst the general public about the disease, and important prevention and early detection measures.

Mikaela will officially commence her role with Kidney Health Australia on Monday September 12, 2016.

 David Morgan

Chairman, Kidney Health Australia Board

28th Kidney Kar Rally Races over the Finish Line for Kidney Kids

2016 Kidney Kar Rally

28th Kidney Kar Rally races over the finish line for kidney kids!

Our famous and much-loved annual Kidney Kar Rally fundraising event has been run and won for another year, raising over half a million dollars for our Kidney Health Kids Programs! Our adventurous teams, in a total of 55 ‘kars’, travelled a huge 4,000kms in just eight days, from Bathurst to Taree, via Dubbo.

A big congratulations to the top three placing teams, Team O'Halloran in 1st place, Learning To Fly in 2nd place and Grimace Too in 3rd place. We also acknowledge our top fundraisers Team Artline, who raised an impressive $54,271, Bathurst Surf Life Saving Club, who raised $40,022 and Xplant, who raised $22,559.

During the Rally, teams passed through the NSW towns of Oberon, Orange, West Wyalong, Dubbo, Narrabri and Tamworth. Kidney Health Australia’s Support team was also in tow, visiting nearby schools, renal units, and Aboriginal Medical Services along the Rally route to present kidney health education sessions to students and health professionals.

The Kidney Kar Rally is our major fundraising event of the year and without it, our support programs for kidney kids wouldn’t be possible. Thank you to all of our wonderful Rally teams for their phenomenal efforts and completing another successful Rally!

Registrations are already open for next year’s event, so check out the Kidney Kar Rally section of the website to find out more or register your interest in 2017!

Anne Wilson Bids Farewell as CEO

 

Anne Wilson Bids Farewell as CEO

To our Kidney Community, who inspires me each and every day, the time has come for me to bid you farewell.

After more than 13 years at the helm of Kidney Health Australia as CEO and Managing Director, I will be leaving the organisation on 27 May, 2016.

Whilst leaving is always tinged with mixed feelings, I am so proud of what we have achieved for Australians affected by kidney disease since I commenced in January, 2003.  Our achievements include:

  • Successfully transitioning the former Australian Kidney Foundation from a confederation of state bodies to one national organisation
  • Instigating and completing re-naming and re-branding of the organisation to ensure appropriate positioning within the national chronic disease landscape
  • Creating a solid financial investment platform including successful commercial ventures for ongoing sustainability
  • Achieving a 5 fold increase in financial turnover to 2015
  • Establishing the organisation as the peak advocacy body on kidney disease in Australia
  • Establishing the Priscilla Kincaid-Smith Kidney Research Foundation

I say 'we' because any leader or CEO is only as good as the people who make up the lifeblood of the organisation, and I am privileged to have spent over a decade leading an incredible team of passionate people, dedicated to the kidney cause and improving the lives of all Australians touched by kidney health issues.

I leave Kidney Health Australia in the knowledge that the organisation is poised to build on our achievements to date and continue to passionately deliver on our vision to 'save and improve the lives of Australians affected by kidney disease'.

In my place, our CFO and Company Secretary Rosanna Care, will act as Interim CEO until my successor is identified. 

Thanks and appreciation are extended to my Board, Senior Management Team, and to all Kidney Health Australia staff for their support and loyalty to me and the organisation.  Importantly I salute you, Australia’s Kidney Community.  I am humbled and honoured to have served you - it has been a privilege.

Anne Wilson

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