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Painful Transitions Report 2016

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This report seeks to inform Arthritis and Osteoporosis Victoria, Arthritis and Osteoporosis Western Australia and other relevant agencies about the experiences of 16-24 year old Australians with persistent musculoskeletal pain, and their needs and preferred modes of delivery for pain management services with a focus on digital technologies.

This report represents a collaborative initiative between Arthritis and Osteoporosis Victoria and Arthritis and Osteoporosis Western Australia and the School of Physiotherapy and Exercise Science, Curtin University, Perth Western Australia. Other partner organisations included HealthSense (Aust) Pty Ltd and Wisdom Health.

About this report

We explored:

1. young people’s experiences of living with persistent musculoskeletal pain

2. their perceptions about the associated challenges, service gaps, and their perceived needs and

3. their preferences for modes of service delivery, particularly as they related to the use of digital technologies

Click here to download the PDF

AOWA President Dr Jack Edelman awarded Member of the Order of Australia (AM)

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We are very pleased to announce that our President, Dr Jack Edelman has been awarded a Member of the Order of Australia (AM) for his significant service to community health (particularly to people with arthritis and osteoporosis) and to medicine as a Rheumatologist.

Dr Edelman has been President of Arthritis and Osteoporosis WA since 1989 and a Board Member since 1988.

He was instrumental in obtaining support and funding for the construction of the Wyllie Arthritis Centre, and establishing the Chair of Rheumatology and Musculoskeletal Medicine at the University of Western Australia.

Younger Australians hit hard by arthritis

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MEDIA RELEASE: 12 October 2015, SYDNEY

New online resource, EMPOWERED, launched on World Arthritis Day to help people with arthritis better manage their condition.

  • The vast majority (86%) of the more than half a million younger Australians (18-49 year old’s) living with arthritis believe there is a need for more publicly available educational information about arthritis to help better manage their condition.
  • 41% of 18-49 year old’s living with arthritis have been diagnosed with depression or anxiety. Half (54%) also reported often feeling down about their arthritis.
  • 41% of 18-49 year old’s say their arthritis has had a significant adverse impact on their ability to work, including having to change the type of work they do, reduce their work hours or give up paid work altogether.

To coincide with World Arthritis Day, Arthritis Australia has today announced the launch of a new online resource, called EMPOWERED, to support those living with rheumatoid arthritis (RA), ankylosing spondylitis (AS) and psoriatic arthritis (PsA) to better manage their condition.

Although arthritis is typically associated with an older age group, the results of a new consumer survey of people living with arthritis released today, reveals the hidden struggles the condition is causing among younger Australians (aged 18-49), particularly in relation to their workplace participation, financial status and emotional health.

“World Arthritis Day is a great platform to educate Australians that arthritis is not just a condition that affects older people,” said Ainslie Cahill, Chief Executive Officer of Arthritis Australia.

“Arthritis doesn’t discriminate and can affect anyone. It is vital that anyone who is diagnosed with the condition has the support they need to best manage their condition and ensure their quality of life is not hindered.”

EMPOWERED was developed by Arthritis Australia to provide timely, relevant and actionable information and assistance to people living with RA, AS and PsA.

“Our survey found that almost half of Australians living with arthritis are only just coping or not coping at all with their condition, reinforcing why the launch of EMPOWERED is so important in helping those affected to better manage their arthritis. The ultimate goal of the online resource is to empower people living with these specific forms of arthritis to better understand and manage their condition,” Ms Cahill said.

“The survey also highlights the very profound impact that arthritis is having on younger Australians, particularly in relation to their ability to work and on their quality of life. A staggering 51 per cent reported that their arthritis has significantly reduced their quality of life,” she continued.

The survey, conducted by Galaxy Research, also reveals that a quarter of 18-49 year olds believe their arthritis has reduced their ability to hold down a good job, and a third (29%) believe they have been discriminated against at work because of their arthritis1 – highlighting the shortcomings in workplace and community support of this vulnerable group of people.

“It’s disheartening to hear the serious, and often overlooked, impact arthritis is having on the lives of young people living with the condition. Many believe their arthritis has led to financial strain, has caused them to be fearful of the future and put stress on their personal relationships,” said Ms Cahill.

“I urge all Australians living with rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis, their healthcare professionals and their families and friends, to visit the EMPOWERED site for information, videos and support on how to best manage these conditions,” Ms Cahill concluded.

To visit the EMPOWERED website log-on to: www.empowered.org.au

For the Arthritis Australia Helpline please call 1800 011 041.

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The EMPOWERED website has been independently developed by Arthritis Australia with an educational grant from Janssen (Janssen-Cilag Pty Ltd).

About Arthritis

  • Nearly one in six Australians has arthritis. That is approximately 3.3 million people. Around 56 per cent of people with arthritis are of working age (18-65 years).
  • Arthritis is often referred to as a single disease; however, it is actually an umbrella term for more than 100 medical conditions that affect the musculoskeletal system, specifically joints where two or more bones meet.
  • The most common forms of arthritis are: osteoarthritis, rheumatoid arthritis, gout, ankylosing spondylitis,  lupus and psoriatic arthritis and, in children, juvenile arthritis.
  • Arthritis-related problems include pain, stiffness, inflammation and damage to joint cartilage and surrounding structures. This can result in joint weakness, instability and deformities that can interfere with the most basic daily tasks such as walking, driving a car and preparing food.
  • Arthritis is a major cause of disability and chronic pain in Australia.
  • Arthritis costs our economy more than $23.9 billion each year in medical care and indirect costs, such as loss of earnings and lost production.
  • As the population ages, the number of people with arthritis is expected to continue growing, with current trends suggesting that by 2050, approximately 7 million Australians will live with some form of arthritis.

About Arthritis Australia

Arthritis Australia is a charitable not-for-profit organisation, and is the peak arthritis body in Australia. It is supported by affiliate offices in ACT, New South Wales, Northern Territory, Queensland, South Australia, Tasmania and Western Australia. Arthritis Australia provides support and information to people with arthritis as well as their family and friends. It promotes awareness of the challenges facing people with arthritis across the community, and advocates on behalf of consumers to leaders in business, industry and government.

About the Consumer Survey

This study was conducted online by Galaxy Research among members of a permission based panel between Friday 11 September and Tuesday 15 September 2015. Eligibility for the study was determined by claimed diagnosis of arthritis. A representative national sample of 4,332 Australians aged 18 years and older were asked the eligibility question; with the final survey conducted among n=1,052 (26%) who had been diagnosed with arthritis. The study was conducted by Arthritis Australia with an educational grant from Janssen (Janssen-Cilag Pty Ltd).

Public safety must not be pushed sside in Government quest for Biosimilar budget savings

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Media release – 22 June 2015

Arthritis Australia is concerned that patient safety may be compromised by current moves in Australia to allow biosimilars to be substituted for biologic medications at the pharmacy level.

 Click here to download the full media release

Biologic medications are used to treat a number of auto-immune forms of arthritis, including rheumatoid arthritis and juvenile arthritis.  People with auto-immune forms of arthritis are one of the largest patient groups in which these medications are used.

Many biologics used for arthritis are now starting to come off patent and copies, known as biosimilars, are beginning to enter the market.

While biosimilars are very similar copies of biologic medications they are not generics. Biologic medications are extremely complex molecules grown using living organisms and it is virtually impossible to replicate them exactly.  Consequently it cannot be assumed that a biosimilar can be used interchangeably with its biologic reference product.

Switching between a biologic and its biosimilar may increase the risk of adverse events and may impede safety monitoring.  Clinical evidence on the safety and effectiveness of patients switching between a biologic and a biosimilar is currently limited.

 Click here to download the background paper

Our position is that we welcome the introduction of biosimilars because they offer the potential to reduce health system costs and increase patient access and choice to effective biologic medications.   However, until more clinical evidence regarding the safety and efficacy of switching is available, people who are already receiving a biologic medication should not be switched to the biosimilar version without the informed mutual decision of the prescriber and the consumer.

We are strongly opposed to current moves to allow substitution at the pharmacy level. These moves include provisions in the National Health Amendment (Pharmaceutical Benefits Scheme) Bill and recent advice from the Pharmaceutical Benefits Advisory Committee that it will consider, as its default position, allowing pharmacist to substitute biosimilars for the original biologic.

Until more evidence is available, we strongly urge the government to proceed with caution to ensure measures to encourage the uptake of biosimilars do not compromise patient safety in any way.

Arthritis: Count the cost and bank the savings

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Media Release – May 30, 2016.

Major report shows the growing multi-billion dollar costs of arthritis to the economy, individuals and to the healthcare system and how relatively small investments could yield savings of more than $170 million a year.

“Four years ago, I was in a lot of pain, needed a walking stick to get around and was on the verge of having surgery on both knees,” said Anne Ashford who has lived with osteoarthritis for over a decade.

“But then my life was transformed for the better by arthritis-appropriate exercise and a weight loss program. I have now discarded my walking stick, stopped taking arthritis drugs and joint replacement surgery is not even on the horizon anymore.”

“Anne’s experience is a perfect example of how better care and support for people with arthritis could save health system costs by reducing the need for joint replacement surgery,” says Franca Marine, Policy and Government Relations Manager at Arthritis Australia.

“We spend more on joint replacements than on any other hospital procedures, yet little priority is given to programs that can prevent or delay these expensive surgeries. Our report finds that supporting better non-surgical management for people with knee osteoarthritis could save the health system more than $170 million in reduced knee replacements alone. This could be achieved with an investment of as little as $11 million a year.

“Arthritis already costs the health system $5.5 billion and this will grow to $7.6 billion by 2030 unless more is done to prevent and better manage the condition.”

Professor Danny Liew, a physician and clinical epidemiologist at the University of Melbourne, agrees: “As the Australian population becomes older on average, the healthcare burden of arthritis threatens to significantly increase. It is important that we put more focus into preventive and early interventions. These are not only beneficial for patients, they are also more cost-effective.”

The report also highlights the economic impact of arthritis in terms of people’s work capacity, finding that early retirement due to arthritis costs $7.2 billion in lost GDP alone.

“When I was first diagnosed with rheumatoid arthritis at the age of 36, it was the most difficult time of my life. I think I cried every single day. I didn’t know how bad my disease would be or what impact it would have on my life,” says Cheryl Dines who has lived with the condition for the last nine years.

“I was working for an international bank, studying law and my career was on track but by 2010, my body wouldn’t do what I needed it to do to perform at the level required so I was forced to make the devastating decision to stop work.  It has now been 6 years and I am still unable to work due to the high levels of pain and fatigue and the unpredictable nature of my disease. I am now a solicitor – who cannot work.

“More support from a specialist nurse would have been fantastic and might have helped me cope better.”

“Cheryl is not alone in her experience. The modeling behind the Counting the Cost report has found that 52,000 people aged 15-64 years are unable to work due to their arthritis,” said Professor Deborah Schofield, a respected health economist from the University of Sydney.

“This leads to a loss of personal income of $955 a week, or $1.8 billion a year nationally rising to $2.6 billion by 2030. The cost to the government of early retirement due to arthritis is over $1.1 billion a year in extra welfare payments and lost taxation revenue. Lost GDP due to arthritis-related early retirement was $7.2 billion in 2015 and this will reach $9.4 billion a year by 2030.”

“These are big numbers but by providing better care and support for people with arthritis, we think they can be reduced’, said Ms Marine.

As a first step Arthritis Australia is urging all political parties to commit to:

1)  $11m to support non-surgical management for people with osteoarthritis

2)  $3m for specialist nurses to support people with auto-immune and inflammatory forms of arthritis such as rheumatoid arthritis and juvenile arthritis

3)  $10m a year to boost research funding, including $1m for research into juvenile arthritis which currently receives very little research funding.

People affected by arthritis are encouraged to join the SpeakUp4Arthritis campaign in the lead up to the Federal election www.speakup4arthritis.org.au to urge political parties to commit to programs for better care for people with arthritis.

Background

Counting the cost: the current and future burden of arthritis is a report prepared by Professors Deborah Schofield of the University of Sydney and Danny Liew of the Melbourne EpiCentre at the University of Melbourne and their teams for Arthritis Australia.

The report is published in two parts and is available from http://www.arthritisaustralia.com.au/index.php/reports/counting-the-cost.html

In relation to the health system, the report shows that:

  • Nearly 4 million Australians currently live with arthritis; this will rise to 5.4 million by 2030
  • Arthritis costs the health system $5.5 billion in 2015 and this will grow to $7.6 billion by 2030 unless more is done to prevent and better manage the condition
  • Programs to support better care for people with arthritis could save the health system $170 million a year by reducing the need for joint replacement surgery.  This is important because we spend more on joint replacements than on any other hospital procedures, yet little priority is given to programs that can prevent or delay these expensive procedures
  • Modelling shows that supporting non-surgical management for people with knee osteoarthritis can substantially reduce demand for expensive knee replacements, saving $170 million a year within 12 months. This saving is projected to grow to $234 million a year by 2030.

In relation to productivity, the report shows

  • 52,000 people (aged 15-64 years) are unable to work due to their arthritis.

This leads to a loss of personal income of $955 a week, or $1.8 billion a year nationally.  By 2030, lost personal income due to arthritis-related early retirement is projected to reach $2.6 billion. The cost to the government of early retirement due to arthritis is also substantial, at over $1.1 billion a year in extra welfare payments and lost taxation revenue, rising to nearly $1.5 billion by 2030

  • Lost GDP due to arthritis-related early retirement was $7.4 billion in 2015 and this will reach $9.4 billion a year by 2030.

Arthritis is one of the most common, costly and disabling chronic conditions in Australia, but the personal, social, and economic costs of the condition are poorly recognised. There is also a mistaken perception that arthritis is an inevitable part of ageing and nothing can be done about it. As a result, programs to support people living with arthritis do not receive the priority they deserve.

Governments need to do much more to address the burden and cost of arthritis.

Acknowledgement

The research reported in Counting the Cost: the current and future burden of arthritis  was  made  possible  by  an  unrestricted  grant  from  The  Medicines Australia   Community   Chest   to   Arthritis   Australia.   The   Community   Chest supporters are AbbVie Pty Ltd, AstraZeneca Pty Ltd, Eli Lilly Australia Pty Ltd, Janssen-Cilag Pty Ltd, Pfizer Australia Pty Ltd, and Roche Products Pty Ltd.

Arthritis may increase risk of falling into poverty

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New research suggests developing arthritis may increase the risk of falling into poverty – especially for women, for whom the increased risk was found to be three times that of men.

The researchers, from the University of Sydney in Australia, report their findings in the journal Arthritis & Rheumatology.

For their study, they analyzed data from a nationally representative survey conducted between 2007 and 2012 of more than 4,000 adults living in Australia.

Although the word “arthritis” means joint inflammation, the public health world uses the term to describe more than 100 rheumatic diseases and conditions that affect joints, the tissues that surround the joint and other connective tissue.

The pattern, severity and location of arthritis symptoms varies, depending on the specific type. Typically, the symptoms can develop gradually or suddenly and include pain and stiffness in and around one or more joints.

Some forms can also involve the immune system and various internal organs of the body.

Income poverty and multidimensional poverty

In their analysis, the researchers differentiate between income poverty and what they define as “multidimensional poverty,” which takes into account health and education attainment, as well as income.

Fast facts about arthritis

  • The most common form of arthritis is osteoarthritis
  • Other forms include gout, fibromyalgia and rheumatoid arthritis
  • An estimated 67 million American adults are projected to have doctor-diagnosed arthritis by 2030.

The analysis found that women who developed arthritis were 51% more likely to fall into income poverty than women who did not develop the disease.

For men, developing arthritis was linked to 22% increased risk of falling into income poverty.

However, the risk of falling into multidimensional poverty as a result of developing arthritis was 87% higher for women compared with counterparts that did not get the disease, whereas in men, this figure was 29%.

The researchers conclude:

“Given the high prevalence of arthritis, the condition is an overlooked driver of poverty.”

Lead author Dr. Emily Callander says as populations in developed nations age, arthritis will become increasingly common, and this finding of a link to poverty should “flag to policy makers in welfare departments the influence of the condition on national living standards.” She adds:

“Furthermore, the high risk of poverty should be kept in mind by clinicians seeking the most appropriate treatment for their patients with arthritis, as affordability of out-of-pocket costs may be an important factor.”

Meanwhile, Medical News Today recently learned of another study published in Arthritis & Rheumatology that suggests patients who have total hip or knee replacement surgery for osteoarthritis may be at increased risk of heart attack during the postoperative period and have a higher long-term risk of venous thromboembolism (VTE).

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