Tuesday, 12 May 2020
Tonight, amidst the uncertainty of the COVID-19 crisis, I rise to speak about a different health condition: multiple sclerosis, more commonly referred to as MS. Senator Deborah O'Neill and I are co-chairs of the Parliamentary Friends of MS group, and together we hosted the launch of this group for the 46th Parliament in February this year. When I became a senator just over a year ago, I replaced Senator David Bushby. Prior to his resignation, Senator Bushby had co-chaired the parliamentary friends group with Senator O'Neill for several years. As you know, David is also my brother, and together we've had a shared interest in MS since 1979. This was when our eldest brother, Peter, was diagnosed with MS, a neurological disorder that interferes with the transmission of nerve impulses throughout the brain, spinal cord and optic nerves. Peter was a young, recently married man when he received the diagnosis. Many things certainly changed as a result, but he is still living life to the full and enjoying his three beautiful grandchildren, Jack, Oliver and Lucy. Peter retired only recently, after a 45-year career in real estate in Launceston.
Tasmania has the highest rate of multiple sclerosis prevalence in Australia, at around double the rate of Queensland. The further away from the equator people live, the higher the prevalence of MS. As the southernmost state, Tasmania certainly fits that bill. This is a concern for my state's health service, but the disorder has far-reaching impacts, affecting thousands throughout our country. There are more than 25,600 Australians living with MS. More than 10 people are diagnosed with this disorder each week, with most people finding out they have MS between the ages of 20 and 40. MS Research Australia's Health Economic Impact of Multiple Sclerosis in Australia in 2017 study found this disorder costs $1.75 billion annually in Australia. Worldwide 2.5 million people are living with MS, and three out of every four of those are women.
One of the first places I visited last year, as a new senator, was the Menzies Institute for Medical Research in Hobart, a facility that has been at the forefront of research into MS for the past 20 years. Menzies scientists, in collaboration with others researchers around the world, were responsible for one of the biggest breakthroughs in MS research in recent years: the link between UV exposure and vitamin D and a reduced risk of MS. Taking on the co-chair position of the Parliamentary Friends of Multiple Sclerosis has given me the opportunity to learn even more about MS. At the parliamentary friends launch, I was very pleased to be able to share with attendees that the Morrison government was continuing its support of MS research.
Last year our government gave a $30 million grant to the Medical Research Future Fund and $10 million to Menzies Research for the Menzies MS Flagship Program. Since 2010, the National Health and Medical Research Council has provided $67 million towards MS research grants. This is something we will continue to work with MS representatives on, and I look forward to research providing a cure for this disorder in years to come. In addition to government support, MS Australia recently announced a $1 million funding boost from four state and territory MS organisations—New South Wales, Victoria, Tasmania and the ACT—to support MS research in Australia. This funding will be used to investigate myelin repair and neuroprotection research that will pave the way to end MS forever.
The launch at Parliament House was also a fantastic opportunity for Senator O'Neill and I to acknowledge the work done by the staff and volunteers of MS Australia, through their CEO, Deidre Mackechnie, and to meet a number of people living with MS. One of those with lived experience was Briony Heanu, who spoke eloquently about her MS diagnosis and her hopes for a cure. Now in her mid-30s, Briony was diagnosed with a form of relapsing-remitting MS at the age of 30. While Briony said her age of diagnosis was right on cue for the disorder, her first symptoms actually occurred when she was 19. She told us about sitting in a lecture theatre for a university course. Every time she glanced over to the right, her eyes would jerk uncontrollably back to the left, and she couldn't work out why. Symptoms continued in the form of intolerable nausea and head spins that were so bad she could not stay on a bus for more than 10 minutes at time and she frequently misbalanced while walking in familiar surroundings at home, walking into doorframes instead of through the door. By the time Briony saw a neurologist to discuss the results of her MRI, her symptoms had resolved, but the doctor still told her: 'If it happens again, it's probably MS. Until then, live your life.' That was 2005, and the treatment for relapsing-remitting MS required self-injections, something Briony did not want to do. Just over a decade later, though, in 2016, Briony received confirmation she had the condition, but more evidence had been found by that stage, with another four treatment options available for the form of MS she had. Briony told the launch guests that the single reason these massive improvements happened in just 10 years was research. This research, done by scientists, doctors and clinicians, could only be achieved through the commitment of the staff and resources dedicated to this cause. It is this research that the Morrison government is supporting.
Living with MS is a lesson in living with uncertainty. There is no one symptom that indicates someone has MS and no single test that can establish an accurate diagnosis. Common symptoms include: changes in memory, concentration or reasoning; slurred or slow speech; extreme fatigue; tingling, numbness or pins and needles; muscle weakness, tremors, stiffness or spasms; difficulty with walking, balance and coordination; blurred or double vision; dizziness or vertigo; emotional or mood change; and sensitivity to heat and/or cold. This list includes both visible and invisible symptoms, and those with MS can experience a handful or many at different times in their life. Many with the disorder have no idea when their symptoms will resolve or if they will resolve at all. They don't know if they will get more symptoms, or when, of if their disorder will progress. But they, and we, are hopeful there will one day be a cure.
Already our researchers are investigating treatments that can reverse the damage caused by brain lesions. New research makes the hope of a cure more possible all the time, with new treatments and management plans making it easier to live with MS in the meantime. Briony told us that someone once described MS to her as a spectacular collision between two of the most complex and mysterious systems of the body: the central nervous system and the immune system. Trying to solve the cause of such a collision is an incredibly daunting prospect, but the return on investment is a good one. As Briony points out, if we can solve some of the mysteries around something that affects these two systems, what other discoveries might we make in other neurological conditions along the way?
To raise money and awareness of this disorder, MS Research Australia is again running their Kiss Goodbye to MS campaign throughout May. Participates will run or walk 50km this month to help raise funds for Australian research targeting prevention, treatment and/or cure for MS. It doesn't matter where a participant lives or what their fitness level is, because they decide how they complete their 50 kilometres. The MS Research Australia Facebook page shows two participants who ran the whole 50 kilometres in one go. Others, I am sure, will spread it out and do just a few kilometres a day. The 2019 Kiss Goodbye to MS campaign raised $2.5 million. Let's see what we can achieve this year.
In closing, I'd like to go back to Briony again. Before her world changed with her MS diagnosis, Briony was a Bachelor of Science student. To celebrate the start of her degree, her sister bought her a book by Dr Karl, asking him to sign it for her sister. On the front page of the book, Dr Karl wrote a special message for the young science student. He told Briony, 'The Nobel Prize isn't awarded for the answer; it's awarded for the question, so ask the right questions.' While we might not yet have an answer for multiple sclerosis, what we do have is a lot of question and many, many people who are willing to ask and, hopefully, answer those questions.
Already we've answered questions about the environmental factors that impact MS. We know about the link between vitamin D and a reduced risk of MS. We know that the brain and spinal cord can repair itself. We now know about remyelination, where nerve fibres are recoated with myelin and how this could reverse some of the effects of MS. These are just some of the questions our researchers have investigated when studying prevention and treatment of MS. How many questions are we away from a cure?