Advertise on podcast: Patient PrepRheum Podcast

In our second episode, Naomi chats with Julie Norris, who lives in rural Victoria and whose life has been profoundly shaped by resilience, compassion and advocacy. Living with lupus for more than 34 years, she has navigated the daily challenges of a chronic illness while raising her son as a single parent. Julie shares her challenging diagnosis journey and emphasizes the importance of self-efficacy, symptom tracking, and why understanding your blood tests can help make your treatment journey smoother. She also highlights how a new immunotherapy treatment has significantly improved her quality of life. Julie goes on to discuss her memoir, Shattered Silence: Reclaiming My Voice, which documents her lived experience and advocacy for better patient empowerment and communication among healthcare providers. Julie’s story is one of survival and renewal, and she continues to use her voice to empower others, reminding them that they are not alone and that together, communities can create lasting change. Meet the Team Host: Naomi Creek, National Coordinator at CreakyJoints Australia. A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF. This fourth season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from AstraZeneca. For more information, visit the CreakyJoints Australia website at creakyjoints.org.au See omnystudio.com/listener for privacy information.

In our first episode, host Naomi Creek discusses all things lupus with Professor Eric Morand, a Sir John Monash Distinguished Professor, a physician-scientist and Dean of the Sub-Faculty of Clinical and Molecular Medicine at Monash University. He is a clinical rheumatologist specialising in systemic lupus erythematosus (SLE) and is Head of the Monash Health Rheumatology Unit. Professor Morand provides an insightful overview of lupus and its symptoms and shares the challenges of diagnosing and treating lupus due to its complex nature. He highlights the importance of achieving early diagnosis to minimise damage to body organs. Professor Morand also talks about the role of genetic factors and the need for patient self-efficacy and empowerment. Their conversation covers treatment options for lupus including new targeted therapies, clinical trials and the potential of CAR T-cell therapy for achieving drug-free remission. Meet the Team Host: Naomi Creek, National Coordinator at CreakyJoints Australia. A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF. This fourth season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from AstraZeneca. For more information, visit the CreakyJoints Australia website at creakyjoints.org.au See omnystudio.com/listener for privacy information.

Naomi and her guests discuss ways to manage axSpA in daily life in this third episode of the season. Janet Millner is an experienced physiotherapist and a valued member of the rheumatology team at the Royal Hobart Hospital in Tasmania. She has special interests in the management of spondyloarthritis and persisting musculoskeletal pain. Janet’s clinical role includes supporting people with complex rheumatological conditions to optimise their fitness and ability to function. Janet emphasises the role of regular exercise in maintaining joint function and overall health. She acknowledges that exercise can be challenging for people with axSpA and discusses how it can be adapted to suit individual needs and preferences. Naomi’s guests from the previous two episodes, Cherie Cleland and Shayne Van Der Heide, return to share their experiences of managing axSpA holistically. Along with Jane, they discuss various ways to keep moving, such as cycling, swimming and physiotherapy. The guests also share tips on other lifestyle changes that can help people with axSpA, including using modified furniture and other aids, working from home, slowing down during flares and asking for help when needed. All believe that even doing a few minutes each day can make a difference. We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected] Meet the Team Host: Naomi Creek, National Coordinator at CreakyJoints Australia. A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF. This third season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from UCB Australia. For more information, visit the CreakyJoints Australia website at creakyjoints.org.au See omnystudio.com/listener for privacy information.

In episode 2 of this season, Naomi and her guests discuss the comorbidities associated with axial spondyloarthritis (axSpA). Dr Arupam Raman is a rheumatologist at South by Southwest Specialists in Gledswood Hills, NSW. She also holds a Master of Medicine (Internal Medicine) from the University of Sydney, further strengthening her expertise in managing complex conditions and delivering evidence-based care. Dr Raman is actively involved in medical education and contributes to the ongoing development of rheumatology treatment approaches. Dr Raman outlines the most common comorbidities associated with axSpA, including hypertension, obstructive sleep apnoea, fibromyalgia and depression. She looks at the role of inflammatory cytokines and risk factors in developing comorbidities and believes patients should be screened for such conditions so they can be managed proactively. Naomi is also delighted to talk with Cherie Cleland and Shayne Van Der Heide from Episode 1 again. Cherie and Shayne both live with comorbid conditions and openly share how they manage these conditions alongside their axSpA. Finally, they reflect on the ups and downs of talking to family and friends about their conditions.We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected] Meet the Team Host: Naomi Creek, National Coordinator at CreakyJoints Australia. A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF. This third season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from UCB Australia. For more information, visit the CreakyJoints Australia website at creakyjoints.org.au See omnystudio.com/listener for privacy information.

In this episode, host Naomi Creek and her guests discuss the early stages of Axial Spondyloarthritis (axSpA). Cherie Cleland (70) lives with a non-specific form on axSpA. She has tried numerous treatments over the years and has developed other health conditions including inflammatory bowel disease and thyroid, kidney and heart issues. Cherie and her husband love travelling and cycling. Shayne Van Der Heide (57) was diagnosed with ankylosing spondylitis at age 30 but felt very isolated with little support from his doctors. Shayne later had spinal surgeries and developed Parkinson’s disease. He lives a full life spending time with his family, managing a training organisation and cycling for exercise and enjoyment. Cherie and Shane share their long diagnosis and treatment journeys and the impact of axSpA on their lives. They emphasise the importance of good doctor-patient communication and of getting quality information and support to help them feel less overwhelmed and alone. Dr Michael Yoon is a rheumatologist at Campbelltown Hospital in Sydney, NSW, with a special interest in axial spondyloarthritis (axSpA). His passion for patient-centered care and clinical research drives his continuous efforts to enhance treatment approaches. Dr Yoon explains the challenges of diagnosing axSpA as there is no definitive test and symptoms are similar to those of other conditions. Doctors rely on a mix of tests, imaging and clinical judgement. Treatment can range from anti-inflammatories to medications that suppress the immune system, along with exercise and lifestyle adjustments. We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected] Meet the Team Host: Naomi Creek, National Coordinator at CreakyJoints Australia. A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF. This third season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from UCB Australia. For more information, visit the CreakyJoints Australia website at creakyjoints.org.au See omnystudio.com/listener for privacy information.

In our third episode, Naomi is chatting with Simone Bye from New South Wales, who lives with psoriatic arthritis. Simone was diagnosed in 2018 and is a mum of two young children. She says the hardest part of her journey has been trialling and medically failing so many treatments, which has made it difficult to be the parent she wants to be for her kids. Despite these challenges, she is doing her best to manage her condition and get on with life.Naomi is also joined by Sarah Comensoli from BJC Health in Sydney. Sarah has several roles there as a director, head of marketing and manager of the allied health team. She has been practising as an Accredited Exercise Physiologist since 2008 and has worked in a number of clinical and gym settings since then. Sarah has been instrumental in building the Exercise Physiology service at BJC Health to be one which is unmatched in delivering care to those with rheumatic disease.Sarah shares her expertise in working with rheumatology patients and says there is no “one size fits all” approach in helping people keep fit and healthy. She explains how tailoring an exercise program is the key to success in getting patients engaged in better lifestyle habits. Simone discusses some of the ways her allied health team are helping her integrate techniques into her daily life so she can function more efficiently, physically and mentally. Contact Us We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected] Meet the Team Host: Naomi Creek, National Coordinator at CreakyJoints Australia. A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF. This second season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from UCB Australia.For more information, visit the CreakyJoints Australia website. See omnystudio.com/listener for privacy information.

In this episode, Naomi is joined by two patients. Kay Boucker is from New South Wales and was diagnosed with psoriatic arthritis in 2013. Kay lived with psoriasis for many years before experiencing other symptoms like fatigue, tendon pain and uveitis. She said it took her GP a long time to be convinced about her PsA symptoms but she was finally referred to a rheumatologist. Kay also lives with type 2 diabetes and depression and says singing is her happy pill for helping her through life’s challenges.Naomi’s second guest is Andrea McMahon from South Australia. Andrea was diagnosed with rheumatoid arthritis, Sjogren’s syndrome and fibromyalgia in 2010.  Then, four years ago, she presented to her rheumatologist with new symptoms of splitting nails and lower back pain. Shortly after that she was diagnosed with psoriatic arthritis. The ups and downs in her journey have taught her patience, pacing and resilience. Andrea remains optimistic for her future and continues her life with as much activity as she can.Kay, Andrea and Naomi share their experiences and insights on managing psoriatic arthritis and living with chronic illnesses. They emphasise the importance of lifestyle factors, seeking knowledge, and finding support systems. Kay and Andrea discuss the impact of their conditions on their daily life, while offering practical advice and personal anecdotes to help others navigate the challenges of living with chronic conditions. Contact Us We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected] Meet the Team Host: Naomi Creek, National Coordinator at CreakyJoints Australia. A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF. This second season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from UCB Australia. For more information, visit the CreakyJoints Australia website. See omnystudio.com/listener for privacy information.

In this episode, we talk with Dr Premarani Sinnathurai, a specialist in the Rheumatology Department at Royal North Shore Hospital and Clinical Senior Lecturer at the University of Sydney. She was awarded her PhD from the University of Sydney in 2019 on Comorbidity and Patient-Centred Health Outcomes in Psoriatic Arthritis. Her research focuses on the role of comorbidity and adiposity on outcomes in psoriatic arthritis. Her clinical work includes specialist psoriatic arthritis clinics in addition to general rheumatology and acute referral clinics.Dr Sinnathurai discusses the complexities of psoriatic arthritis, including inflammation in joints, tendons and skin and the challenges of diagnosing the condition. We learn about the importance of early diagnosis and appropriate treatment as well as the comorbidities associated with psoriatic arthritis. We also hear about the various medications and lifestyle changes that can help people manage the condition, highlighting the importance of individualised approaches based on patient priorities and patient-doctor partnerships. Contact Us We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected] Meet the Team Host: Naomi Creek, National Coordinator at CreakyJoints Australia. A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF. This second season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from UCB Australia.For more information, visit the CreakyJoints Australia website. See omnystudio.com/listener for privacy information.

In this episode, we’ll be talking about methotrexate and clarifying how it is used in rheumatology settings. Methotrexate is one of the main medications used to slow or stop the progression of autoimmune arthritis and reduce disease activity.   We’ll hear from Janine Fisher, a patient who has lived with rheumatoid arthritis for 31 years. Janine shares her journey with methotrexate, starting with her initial concerns about taking it. She has tried various other treatments over the years and now uses methotrexate successfully in combination with a biologic medication to manage her condition.   Rheumatologist, Dr Irwin Lim will explain why methotrexate is widely used as a front-line treatment for many forms of autoimmune arthritis. He will also explain how it can safely be used by most people and dispel the myths that have developed around it. See omnystudio.com/listener for privacy information.

Learn more about the medication Methotrexate in this short audio guide that accompanies Episode 4: Methotrexate - Management, Myths and Milestones. The guide gives an overview of Methotrexate and delves deeper into how the medication works, how it is used and its side effects. See omnystudio.com/listener for privacy information.

This is an audio guide about patient and doctor communication brought to you by CreakyJoints Australia. Be sure to go to the CreakyJoints Australia website, and join for free to keep updated on all of our resources. TRANSCRIPT This is an audio guide about Patient and Doctor Communication, brought to you by Global Healthy Australia.Whilst many patients have had positive experiences working with their health team, there are still many of you who are unsatisfied with the quality of treatment and are frustrated by the ineffective communication experienced when approaching your GPs/ specialists...Here we would like to offer our top tips so Doctors and Patients can “Get on The Same Page” PATIENTS  Get your needs met, ask, ask and ask some more!  This is about YOU, Doctors are here for you. Be realistic - You won’t always get all the answers from a doctor, so seek advice so you know where to go next!  This process is empowering in itself, there may be setbacks along the way but keep up a proactive mentality/approach and you will land in the right place/direction  Get your needs met - if you are unsatisfied with your doctor, you are 100% entitled to ask your records to be transferred to a new one! It’s common practise and they won’t take it personally.  Helpful ways to keep up effective communication and manage any hesitancy around discussion If you feel nervous or have a particularly sensitive issue, bring a friend, a support person, social worker or someone you feel comfortable with to generate a feeling of safety and security when verbalising your issue. If helpful, Jot down some points before hand so you have a reference point that will keep your discussion on the right track in case you get confused/lost/shy etc. Remember, you are not the first one who has come with the issue you have!  Be accountable with record keeping  Doctors need as much information as possible, the more you have the better you are treated.  If you struggle with this make sure to stay as prepared and organised as possible. This is your best chance at getting the treatment and support you need! Be accountable. DOCTORS  It is essential that doctors have a proper understanding of their patients.  Whilst this may seem obvious, this is not to minimise the health care communities efforts, it’s to address the feedback that there are some barriers that need to be addressed.  Quality Communication  Get clear on your patients value systems: Sometimes patients have a hard time verbalising their needs...  Gain a clear understanding of the patient as a person, ask direct questions that get YOU clear on their needs. What do they like to do with their time?  What kind of lifestyle do they seek?  What is getting in the way of your wants/needs/desires? Pre appointment surveys may be helpful to identify your patients concerns and needs Holistic Understanding: The condition goes beyond physical aspects, affecting emotional, social, spiritual and intellectual aspects of life. Be conscious that there are topics patients struggle to discuss, so you may need to help encourage them on this, remind them its a safe, non-judgemental space.  Broaden your list of resources/ information to offer up. You are a Hub of information for them.  Every patient responds differently to therapy. Be well-versed/updated on the latest news/stats and new developments within Arthritis care. Broaden your pool of resources to suggest to your patients. Get yourself acquainted with key players in the field, help to navigate getting across everything! You’ll be more prepared.  Rosemary: “For sufferers, information is power. It’s one of the ways we cope with the condition”.  People respond differently, be conscious of their personality types when making non-medical based suggestions.  Always be meticulous with record keeping, patient history and handover to specialists  “Something huge I think is missing is an automatic referral for anyone diagnosed with a chronic pain condition to get access to mental healthcare”  Desire for A common platform to keep all records on like the “My Health Record” app.  “I was prescribed a medication that led to hair loss. Things like this can and do have self-image implications! I learnt years later from another specialist that I did not need to take that medication after all!” Always be meticulous and thorough with notes on your patients and collecting relevant information - make sure you share this knowledge promptly and accurately to all members of your patients medical/health/lifestyle team/ support network. Managing complex issues/ chronic illness especially in Hospital settings A known setting where information can be easily lost/miscommunicated.  Take extra care here, having a Complex Disease Coordinator in clinical settings could help keep communication efficient and streamline. Acknowledgement: This is tough and yes there are ups and downs.  Remember this condition does not own you, you have a right to feel empowered in your life choices and you can still pursue your life goals - Life as much a “normal” life as possible See omnystudio.com/listener for privacy information.

This is an audio guide about the approval and sale of therapeutic goods in Australia, brought to you by CreakyJoints Australia.  Be sure to go to the CreakyJoints Australia website and join for free to keep updated on all of our resources. TRANSCRIPT This audio guide is about the approval and sale of therapeutic goods in Australia. It is brought to you by CreakyJoints Australia. Before therapeutic goods (including medicines, biologicals, vaccines, medical devices and products such as vitamins) can be sold in Australia, they must be approved for sale by the Therapeutic Goods Administration (or “the TGA”). The TGA is a part of the Australian Government Department of Health. Individuals or organisations, such as pharmaceutical companies, can apply for (or “sponsor”) a therapeutic good to be considered for sale in Australia by the TGA. Sponsors must also supply evidence of their product’s quality, safety and efficacy gathered through clinical trials. The submission is then evaluated by the TGA. If approved, the product is added to the Australian Register of Therapeutic Goods as a “listed” or “registered” product according to its risk profile. No medicine is 100 per cent risk-free, but the risk is greater for some medicines. Therefore, they place more rigorous controls on higher risk “registered” medicines than lower risk “listed” medicines. Listed products can be sold through supermarkets or pharmacies without a prescription, though not all are evaluated by the TGA for efficacy. All registered products are always evaluated for efficacy before they go on sale. Some are available in pharmacies over the counter after consultation with a pharmacist. Prescription products are only available with a valid prescription from an approved health professional and can only be sold through pharmacies. The Pharmaceutical Benefits Scheme (or “PBS”) heavily subsidises the cost of prescription products for all Australians with a Medicare card as well as some Australian visitors. For example, the actual cost of some medications for autoimmune arthritis is well over $1,000 but, through the PBS, consumers pay less than $50 for them at the pharmacy. Sponsors can apply for registered products to be added to the PBS. These applications are considered by the Pharmaceutical Benefits Advisory Committee (or “the PBAC”). The PBAC is an independent body of health professionals and consumer representatives appointed by the Australian Government. The PBAC meets at least three times a year to review the applications on their agenda. They assess relevant information from the sponsor, the TGA and public submissions before deciding if they should recommend products to the Minister for Health for inclusion on the PBS. Public submissions can come from patients, carers, members of the public, health professionals or consumer groups and are a valued part of the process. They help the PBAC understand how the proposed product will benefit consumers. These perspectives may be quite different from those presented by the sponsor. Products that are on the Australian Register of Therapeutic Goods but are not included on the PBS may still be sold in Australia but they are not subsidised by the Government. If there is a product that you would benefit from that is not currently listed on the PBS, you can ask your healthcare professionals or relevant consumer groups to help you bring it to the attention of the PBAC. This could start the process of making the product available to you and others like you.   See omnystudio.com/listener for privacy information.

This is an audio guide about biosimilar medications, brought to you by CreakyJoints Australia. Be sure to go to CreakyJoints Australia website, and join for free to keep updated on all of our resources. TRANSCRIPT Audio Guide 1: Biosimilar Medications   This is an audio guide about biosimilar medications, brought to you by CreakyJoints Australia. A biosimilar medication (also known as a “biosimilar”) is a very close duplicate of an original brand of biologic medication (or “biologic”).  Biologic medications are developed from living cells and are used for a wide range of conditions including diabetes, chronic kidney failure and some types of cancer. They are often also prescribed to treat autoimmune conditions such as rheumatoid arthritis, psoriatic arthritis and Crohn’s disease. You might already be using biologics such as etanercept (sold under the brand name Enbrel), infliximab (sold under the brand name Remicade) or adalimumab (sold under the brand name Humira) to help treat your condition. Biologics have large complex molecular structures compared to tablet medications. (Picture a basketball next to a pea and you’ll get the idea.) As a result, they cannot be processed through the digestive system. Instead, they are injected or infused into the bloodstream. Unlike the synthetically made generic versions of tablet-form medications (which are 100 per cent identical to the original brand-name medication), biosimilars are almost identical copies of biologics. Biosimilars are made using the same research and materials as the original reference biologics they replicate. The manufacturing processes are also exactly the same. Biosimilars even have the same active ingredient name as their reference biologic, but they are sold under different brand names. However, the end products can never be exactly the same as the original biologics, so they cannot be reproduced identically. Both biologics and biosimilars can even vary slightly between batches. Does this mean biosimilars are safe? Yes, they are. The very minor differences between a biosimilar and its reference biologic mean that the biosimilar has the same safety profile as the reference biologic. Both must go through the clinical trial process, although biosimilars can use some of the data from the clinical trials conducted for their reference biologic. Biosimilars must also pass the same strict regulation processes of Australia’s Therapeutic Goods Administration. Biosimilars will not be approved if they don’t meet the same quality, efficacy and safety standards as their reference biologics. Is there a cost difference between biologics and biosimilars? While biologics are planned and developed from the ground up, biosimilars are based on biologic structures that already exist. This means they are more cost-effective to produce than their reference biologic so they can be sold to the government at a lower price.  Additionally, every time a new biosimilar is launched, the price the PBS pays for ALL equivalent medicines in the category drops. For example, if a new adalimumab biosimilar is approved, the price to the PBS of the reference biologic HUMIRA plus other approved adalimumab biosimilars all drop to the same lower price. In the long run, that means less expensive medicine as the cost savings allow the government to invest in other medications and areas of the healthcare system. There is no price difference for consumers between biologics and biosimilars as these are sold at the same fixed price through the Pharmaceutical Benefits Scheme (PBS). However, consumers benefit from the increased range of treatment options available to them. How are biosimilars prescribed? Only rheumatologists and clinical immunologists are authorised to prescribe biologics and biosimilars in Australia. If you have autoimmune arthritis you will most likely see a rheumatologist to access either of these medication types.  There are several ways you may be prescribed a biosimilar. Firstly, if you meet the access requirements and have not previously been treated with a biologic medication  your rheumatologist may prescribe an appropriate biosimilar for you if there is an approved one on the market for your condition. Also, if you have tried a biologic or biosimilar of one active ingredient and it didn’t work for you, your rheumatologist may prescribe a biosimilar with a different active ingredient that you haven’t tried. Second, you may receive a biosimilar brand if you have been treated with an original biologic brand of the same active ingredient (such as etanercept) and it has been successful. Your rheumatologist can simply specify the biosimilar brand name they use on your prescription. (This process is known as “switching”.) Finally, just as brands of synthetic medications can be substituted with their generic counterparts at pharmacy level, so too can original brands of biologics be substituted with their equivalent biosimilars without the pharmacist checking with the prescriber. This process is known as ‘A’ flagging.  It is important to note that biologics will never be switched for biosimilars at pharmacy level if your rheumatologist has ticked the ‘Brand Substitution not permitted’ box on the prescription form. This ensures your biologic won’t be substituted for its biosimilar unless your rheumatologist deems it safe. Studies have shown there are no increased risks to patients switching between biologics and biosimilars of the same type of medication, although it is always best to speak to your rheumatologist about which options are best for you.  For more information about biosimilars visit the Arthritis Treatments section of the CreakyJoints Australia website (creakyjoints.org.au/education/arthritis_treatment_options/). If you have any further questions regarding biosimilars and biologics in relation to your treatment, speak to your rheumatologist. See omnystudio.com/listener for privacy information.

In our third episode, Naomi learns some top tips from fellow patient Sarah Clark abouthaving good communication with your doctor. Sarah tells of her rocky start with her initial diagnosis and early treatment until she found a specialist who really listened to her.  Rheumatologist, Dr David Liew shares some wonderful insights and what helps him provide the best care possible to his patients. Amongst other committee positions, he served on the Council of Australian Therapeutic Advisory Groups' Expert Advisory Group for the Guiding Principles for the Governance of Biologics and Their Biosimilars in Australian Hospitals and maintains an academic interest in adverse drug reaction surveillance. Dr David Liew ProfileDavid Liew is a rheumatologist and clinical pharmacologist at Austin Health in Melbourne and also leads the Medicines Optimisation Service there. He is also the deputy editor of Rheumatology Republic and a co-host of the Australian Prescriber Podcast. Amongst other committee positions, he served on the Council of Australian Therapeutic Advisory Groups' Expert Advisory Group for the Guiding Principles for the Governance of Biologics and Their Biosimilars in Australian Hospitals and maintains an academic interest in adverse drug reaction surveillance. HOST: Naomi Creek PATIENT: Sarah Clark DOCTOR: Dr David Liew My GP helped me find a Rheumatologist at the Rheumatology ward in Wellington. I just did not connect at all with him. He didn’t really listen to me, his approach was cold and clinical. Hi, I’m Naomi Creek and welcome to our 3rd Episode of Patient Prep Rheum. In this episode, we are diving into the art of communication between Patients, Doctors and the rest of your healthcare team.  We know that many patients have a great line of communication with the members of their healthcare management team. However, we also know there are others out there who find themselves quite overwhelmed due to poor communication when they are just trying to find the best treatments for their often complex conditions.  We believe effective conversations between doctors and patients are extremely important as this not only fosters positive relationships, it also helps to   greatly improve patient outcomes. Sarah Clark, from New Zealand, lives with rheumatoid arthritis. She knows all too well the negative impact that poor communication between a patient and doctor can have on treatment. My GP helped me find a Rheumatologist at the Rheumatology ward in Wellington. I just did not connect at all with him. He didn’t really listen to me, his approach was cold and clinical. My symptoms progressed rapidly, he did not really listen to that. Put me on anti-inflammatories, and said that that should deal with the symptoms which it did not. I was flaring everywhere at this point, probably in every joint. I just wasn’t getting anywhere with him. It was by chance that Sarah”s rheumatologist was away on the day she had her appointment, so she saw a younger female rheumatologist, Rebecca, instead. They connected instantly. She was just really holistic in her approach and could clearly see from my lab results and how I presented in the clinic that my rheumatoid arthritis was 100% not under control. She then started me on strong medications. In NZ it starts with anti-inflammatories, and then it works up tier by tier, so if you fail a medication you can go to the next tier of medications so quite swiftly she got me to try biologics and try humira and I was on methotrexate and still nothing was really helping so she got me on the infusions. One of the major things for me is that she didn’t just sit there with their head in a piece of paper and a pen, they didn’t actually take notes while I was talking to them so they were engaging with me, making eye contact and it made me feel like I was having a conversation and they were responding to me. Rheumatologist Dr. David Liew is aware that the relationship between a patient and their doctor can be complicated. He tries to figure out in the first appointment what they really need from him. When people come to treatment, I’m looking at a few things -  What kinds of things that you need from me that you can only really get from me? What are going to be the biggest impact things for you? What are the things that you are interested in? The biggest value that we add in this situation as rheumatologists, I don’t think it's a diagnosis, I don’t think it’s about knowing what medication comes next… The value that we add is actually being a human person sitting in front of you that can have some, some damn level of empathy for you in this situation when you are going through this tough moment. Dr David Liew appreciates the frustrations patients have, when they feel they can’t get all the answers they seek from their rheumatologist. But, as a medical professional, he’s sometimes limited in the information he can share. I’m not an expert in every bit of medicine and in fact I don’t want to do a disservice. Sometimes, giving a bit of knowledge is a dangerous thing. The times when things go badly it’s often from getting bad advice rather than no information at all. So, I know my limitations and I think most of my colleagues do too. That’s why we try not to go beyond what we know. It’s frustrating to not be able to try and solve everything at once. Just because we don’t deal with those problems outside of our area does not mean that we shouldn’t be aware of those problems - that’s crucial.  We know that with many rheumatological problems there are other issues that sit in other specialities that can come up and it’s up to us to be able to be conscious of all the things that are going on. I think it’s important that a rheumatologist can really articulate some of the things to make sure that we’re getting the same message across different disciplines. I’m very happy to have these conversations with my patients.  I’d rather have these conversations with you and kind of talk through things rather than just leave these things be because that's something you are clearly interested in if you're bringing it up. Although rheumatologists may be willing to listen to other health issues, they may also have a team of allied health professionals in mind. The most important part is picking the right people to help each individual patient. Patients aren't all the same. I’m not going to try and put everyone in one bucket and say this is my cookie-cutter approach for everyone. Sometimes when we are prescriptive, we don’t allow for the situations our patients are in. We don’t want people to get to the point where because they can’t achieve what’s been prescribed to them they stop all together. Sometimes it works, sometimes it doesn’t.  That’s why we don’t just have one session… And we just have to keep on trying things and circling back, seeing what works until something that works for you.  Because that's ultimately what we're trying to do.  There’s also an active role that patients can play to help their healthcare professionals as well. I think it works best when patients are engaged in their care and tracking these things but having said that...I can’t expect that all patients are going to do that. I really like it when my patients bring along their blood tests and it’s brilliant but at the same time I don’t want to abandon my patients who don’t. It’s important to remember that this is all about you. The support is there to help you, so don’t feel as though you are overburdening your doctor with questions. Instead, adopt a proactive approach to your healthcare and align yourself with support systems and find what works for you.  Sarah Clark is living proof that addressing what you need can have a major impact on your treatment. She shares some simple steps to help you reclaim your healthcare power. As long as you keep the communication up and you can just continually talk about what’s happening for you, your symptoms, your side effects then you feel like you're working towards a common goal even if you're not there yet. Making sure you have a list so that when you go in there and you might get into an emotional state you have a list to go back to so you don’t leave the appointment feeling like you haven't been heard about everything you needed to talk about. Even taking a support person who can keep bringing the conversation back to your list or to what’s important to you and who also might also be able to give another perspective on your life outside of that appointment. I know relationships with specialists and GPs are really important but relationships with other people who have autoimmune disease are equally as important. You can help each other navigate the system, you can discuss things that you’ve discussed in your appointments that maybe you didn ‘t completely understand. I just think it’s just a different level of support than a friend who hasn’t had that experience. I think firstly, when dealing with anyone in the healthcare system is that you are only your own advocate so if you don’t stand up for yourself probably no one is going to.  So If the relationship isn’t working it’s going to be up to you to have to  navigate that and actually be brave enough to say something. Regardless of who your rheumatologist is, you can always improve your relationship, which will in turn improve your treatment outcomes, so it’s pivotal to address any and all healthcare concerns. If you are unsatisfied with your doctor, you are 100% entitled to ask for   your records to be transferred to a new one! It’s common practise and they won’t take it personally.  If you need more information about patient/doctor relationships or choosing your healthcare team, be sure to listen to our audio guide or visit the CreakyJoints Australia website at creakyjoints.o

In episode 2, Naomi talks with Janine Monty, who lives with multiple autoimmune conditions. Janine shares why having access to a large range of affordable medicine is key to her being able to manage her everyday life. Having to take 17 different medications, not all on the Pharmaceutical Benefits Scheme (PBS), Janine explains just how crucial the PBS is for her. We are also joined by Rheumatologist Paul Bird, who explains, in easy-to-understand terms, the important role the TGA and PBS plays and how patients can have a say in improving access to a medicine. Dr Paul Bird ProfilePaul Bird has over twenty years’ experience in treating rheumatic disease, with particular expertise in Rheumatoid arthritis, Psoriatic arthritis and Ankylosing spondylitis. A/Professor Bird received his medical degree with Honours from the University of Newcastle, and he completed his physician and rheumatology training in Sydney. Pursuing research alongside clinical medicine and patient care, he completed a PhD in 2005 examining MRI in Rheumatoid arthritis, and a Graduate Diploma in MRI. He continues to undertake arthritis research with fellow Australian rheumatologists and with international colleagues. He has held Staff Specialist roles at both St George Hospital and Prince of Wales Hospital and a visiting medical officer position at Griffith Base Hospital, where he managed a rural rheumatology clinic from 1999-2005. He continues to teach medical students and postgraduates as part of his commitment to medical education. In addition to his clinical practice Dr Bird is the Director of Optimus Clinical Research, a facility dedicated to pursuing trials of the latest developments in rheumatology. Part of review boards for several large international medical journals, he spends time reviewing research and publications, keeping up to date with the most recent medical advances. As part of his commitment to optimising rheumatology treatments, he is member of the OPAL group directorate, a dedicated group of clinicians pursuing exploration of better delivery of rheumatology care through clinician driven research. Internationally recognised as a specialist in rheumatic disease and imaging, he is the current Chair of the International Magnetic Resonance Imaging Research association and actively participates in national and international rheumatology research. HOST: Naomi Creek PATIENT: Neen Monty DOCTOR: Dr Paul Bird I need these medications, some keep me alive, some make my life more comfortable, and some just make my life more convenient, but they’re all incredibly helpful. I’m really grateful I don’t have to choose, but without the PBS I wouldn’t be able to treat all my various health problems.  Hi I’m Naomi Creek, National Coordinator for Creakyjoints Australia, I’ve been living with Rheumatoid arthritis since I was 12 years old, so I appreciate the importance of having access to a range of medicines that I can afford to treat my disease. In this episode of Patient Prep Rheum we’re uncovering the process of how medications are approved by the Therapeutic Goods Administration (the TGA), and from there, how patients can play a role in getting them listed on the Pharmaceutical Benefits Scheme (the PBS).  This is a process that can be complicated, however it is one that allows accessibility to medication, and also one that we, as patients, can influence. We spoke with Rheumatologist, Dr Paul Bird, who explained the role of The Therapeutic Goods Administration in Australia. The TGA is the body in Australia that looks after approving medications so they can be available to the general public, that’s a very important role. So their job is to look at new products as they come through, look at the data that’s presented, and say is this effective, is this safe, is there a need for people in Australia to have this medication. The information they are usually given comes from clinical trials, the TGA will look at all of the data and they’ll either say we are satisfied that this compound that you have developed is effective and safe on the data you’ve given us, we’re going to license it in Australia, or they’ll say no. No, there’s no clinical need for this medication. Once a compound is listed by the TGA, it can be available to the general public, now here’s the catch, it’s available at the price the pharmaceutical company charges for it. So if a drug costs $40,000 per year, yes you can have it immediately, but you’re going to have to pay $40,000 per year if I write you a script. As you can imagine this is not sustainable or affordable for most people. That’s why in Australia we have the Pharmaceutical Benefits Scheme (the PBS), which subsidises certain medications, which is critical for people like Neen Monty who has been living with rheumatoid arthritis for 15 years. I take 17 medications that are on the PBS, every day. I take two medications that are not on the PBS, and one of them runs for $400 a month, and the other one is $80 a month, so without the PBS the medications add up really quickly. Unfortunately for Neen, the costs of medication that aren’t on the PBS put financial pressure on her. She can continue to petition for these two medications to be approved on the PBS, however, for people living with a chronic disease this isn’t an easy process. It is exhausting, because if you are under 17 medications, I’m not such a well person, I really don’t have that much energy so I really do have to pick my battles. Sometimes it feels like you shouldn’t have to fight so hard, this shouldn’t need to be this difficult.  I don’t even know what the process is, I know there’s the PBS advisory committee and they take submissions, and they advise the government, I don’t know what’s involved in what needs to be in the submission, if there was some sort of template as to what kind of information you need to gather, what sort of evidence you need to provide as to what kind of information you need to gather, what sort of evidence you need to provide This is a confusing process that a lot of chronic disease patients rely on but don’t know a lot about. Dr Paul Bird explains the role of the Pharmaceutical Benefits Advisory Committee (PBAC). To get onto the PBS a medication has to pass some very stringent tests, those tests are again, around making sure it’s effective, does it do the job it’s supposed to, making sure it’s safe and does no harm to the people it’ll be given to. Is it cost effective? This is a big thing, cost effectiveness. Is the cost of this drug going to give enough benefit to enough people to enable it to be listed on the PBS. The Pharmaceutical Benefits Advisory Committee is the committee that sits in that room and confers on these issues, and they then advise the PBS as to whether the drug should be listed. All medications are open for comment, so that when a new medication is being submitted to the PBAC there will be a time when comments can be put in by clinicians and patients, and the PBAC will consider those comments. It is sometimes difficult to be aware of when these things are happening, they are generally publicly listed on the Government websites when they are open for comment. Sometimes it’s not just about the stats, it's about the experience that individuals have had with different medications, so there’s power in those voices as well. So it’s a difficult process, and necessarily difficult, because we’ve only got so much in the health budget pot, and the problem is if we let every drug onto the PBS, then we have no money left. So we have to be careful. We have to say ok we only let the medications on where we see the greatest benefit, and the greatest safety, and cost-effectiveness for the majority of people. There are other ways patients like Neen can raise their voice to get medicines put onto the PBS.  Their local member is not a bad person, writing to their local member and expressing their frustrations in regards to medicines. Usually they’re the sort of person who has to reply if they get a written correspondence, and if they get it from a lot of people, they start to do something.  Some people find this an easier option as Federal MP’s can support your request by directing your concerns to the relevant officials.  You can also take your comments directly to PBAC, their agenda is published on the PBS website 14 weeks before their meeting. Patients can submit comments on the medications up for approval for up to eight weeks, by filling in the information sheet found on the PBS website. It’s crucial that patients play an active role in the PBS. Because if it didn’t exist, Neen wouldn’t be left with many choices. It would be a matter of prioritising the medications. There are the ones that literally keep me alive, there are ones that improve my quality of life, manage pain, that sort of thing, and there are ones that just make life easier. My hydrocortisone, if I don’t get that, I will die. I would die pretty quickly without that. Without my thyroid medication I would die really really slowly. Without my rheumatoid arthritis medication I would be lying in bed, crying and having a really miserable life. I wouldn’t be able to get up and move around, I would need a whole lot of help. Same goes with my pain medications. I’m really grateful I don’t have to choose, but without the PBS I wouldn’t be able to treat all my various health problems. The Therapeutic Goods Administration (the TGA) and the Pharmaceutical Benefits Scheme (the PBS), are essential in the Australian healthcare system to keep safe and affordable medications on the market. To learn more about the TGA and the PBS, be sure to listen to our audio guide. If you need guidance making a submission to the PBAC get in touch at creakyjoints.org.au, and remember, your small changes can have a big impact. See omnystudio.com/listener for privacy