Jessica Bean | Coach

Jessica Bean

Add/Update information

Reviews

Tags

• Businesses
• Sport & recreation
• Coach
• Sport & fitness instruction

25.01.2022 How well do you understand how medicines are listed on the PBS? I have a confession to make, until I accessed a medicine through a clinical trial at age 25 and was uncertain how I would continue to access it once the trial had finished, I hadn't contemplated the process for getting a medicine subsidised by the government. I am pretty embarrassed to admit that although I knew access to healthcare was a privilege, in my 25 years of being dependent of our health system I hadn'...t really thought too hard about the policies or processes. I just rocked up to pharmacy each month, paid a comparatively (and mostly) affordable price and walked away with a box of medicines, But understanding how the PBS works and how patients can ensure the things that matter to them are represented in that process is more important now than it has ever been. We can't just 'assume' the medicines we need will be accessible to us when we need them (and you never know when you might need a new medicine - even if you don't already live with a medical condition). Breaking down this information and ensuring it is accessible is part of solving that problem of lack of patient and community knowledge. Even better if it is engaging, 'bite sized' content! I really love this series from Rare Cancer Australia. Take 8 minutes of your day to have a listen and then go and support RCA's amazing work that supports all patients by hitting like or share.

25.01.2022 My friends are the best cooks. I mean, look at this In the last month my vegan friend cooked me a beautiful meat dish, my busy working mum friend drove to deliver food and goodies on her day off and another friend made me a huge batch of the best soup ever (and her husband sent the most delicious pasta sauce I have tasted)! ... I’ve had friends drive across town bringing a selection of vegetables (and cake) just to check I am nourished, another spontaneously have soup delivered to my hospital room and a CF mum dealing with an admission for her own little one, deliver hand cooked goodies. Having this kind of personal catering is almost worth getting sick for. ALMOST. Jokes aside the last two months have been a wild health ride. In english? Pretty crap. However having a the most thoughtful, caring friends in the world has made things a hell of a lot easier. Their food hasn’t just nourished my belly but my heart too. The level of thoughtfulness and care is humbling to say the very least. Whether it be a beautiful hand written card, a perfectly timed text, a hand picked selection of the internets best dog videos, a home cooked meal or a funny gift to make me smile, they have my back. When you feel alone, confused and just so over it, knowing your tribe are there no matter what gives is a fountain of strength. It isn’t receiving ‘things’ from them that means so much, but the fact they aren’t afraid to acknowledge that I am sick and dealing with hard stuff; that in their beautiful, well thought out, selfless gestures, there is something that says, hey I can’t fix this for you but I see how hard it is and I have got you. That connection is the essence of humanity and supporting one another. So other than a bit of bell ringing about the fact my friends could all take out a season of Master Chef, what I want you to know is if you have a friend who is unwell or going through a tough time, the most thoughtful thing you can do is SOMETHING. Something that says ‘hey there, I see your struggle and you're not alone’. It’s often hard to ask for help. And for those of us who become all too accustomed to dealing with challenges, answering ‘yes’ when someone asks if they can help, requires more energy than we can find. So instead of waiting for the yes, surround your friend, your loved one, the deserving stranger with love in a way that you know matters to them. You will probably never understand just how much it means.

22.01.2022 *** Breaking News *** The FDA has approved Vertex's third CFTR modulator Tezacaftor/Ivacaftor (now SYMDEKO). Like Orkambi and Kalydeco this drug treats the underlying cause of Cystic Fibrosis. While Australian patients still wait for Orkambi the pipeline of new drugs is rapidly developing. We are falling behind in our ability to access best practice treatments.... The benefit of medical research is limited if we don't have the ability to benefit from the incredible advancements it brings. We must have both innovative science AND innovative policy. Australia must find a way to provide timely and appropriate access to these life changing medicines to all those who could benefit.

22.01.2022 Life doesn't have to be perfect to be wonderful. As I count down my final days in my twenties, it's hard not to be overwhelmed with what an honour it is to get old. We spend so much of our lives wanting something to be different - our job, our relationship, our health, our SELF that it's easy to overlook what IS great + remarkable + incredible + WONDER-filled right in this moment. ... Rarely does every area of our life align in our expectation of "perfect" at once - if ever. But that is the beauty. Life shifts and changes. It flows no matter how we choose to participate in it. Being witness to the evolution is a gift. We can celebrate the things that are wonderful or focus on the things that we wish to be different. It’s all just a matter of perspective. What is wonderful in your world this week?

21.01.2022 Congratulations to the team at Rare Cancers Australia for putting this powerful piece together. Whether it be a rare forms of cancer or a rare disease, rare patients face inequity in their ability to access treatment. Inequity that costs lives. This will only increase as new paradigms of treatment come to market - as the CF community has experienced with Kalydeco and Orkambi. It has to change.

21.01.2022 Ever wondered why I am so passionate about access to new treatments or harp on about the need for people to stay home when they have a virus? This is why. You might get sick of posts about certain messages, but I get sick of seeing families suffer incredible, unimaginable loss time and time again. This is my community. This is what I and those who live in the cystic fibrosis community see. Loss and heartbreak. Regularly. Cystic fibrosis takes young lives. This beautiful gir...l was only 8 years old. Please send love and prayers to Braylin's family. It is too much to even imagine their pain. I had been following their journey and hoping to see a happy outcome - after all it began with "just" a virus. Loosing the little ones always seems so much harder. Fly free little angel. <3 <3 <3

21.01.2022 Just so you know, this is not comfortable. If you don’t like your regular facemask, you definitely won’t like this. And this is considered NON invasive ventilation. Think about that for a moment. ... Have you ever seen someone on a ventilator? I mean not just in a Facebook photo. It’s much more haunting in real life. You know who I am not seeing complaining about mask wearing? The vast majority of my friends in the chronic illness community. Even those who may have a very valid reason for being unable to wear a mask (side note: your refusal makes life harder for them too). And you know why I think that is? Because I think we know too well the fragility and value of health and life. Many of us know what it is to gasp for every breath. Or be in so much pain we can’t do anything for ourselves- the vulnerability, the loss of dignity, the fear. Many of us have seen how overstretched our health system can be and that you can’t take for granted you will be able to get what you need the minute you need it. Or we know that being isolated in the comfort of our homes has nothing on the loneliness of being isolated for weeks or months in a stark hospital room. Too many of us know the feeling of desperation of a diagnosis with unknown outcomes and agonisingly watching and waiting and praying for a good outcome. Worst of all, many of us have seen people we have got to know and love suffer. We have seen how quickly things can change and the painful silence when suddenly, they are gone. I have visited friends in their final days of life, desperately trying to suck in air to exchange for just a little more life. I have met parents who have had their children die in their arms. We in the chronic illness community have seen our friends and community members die, more so than most. And because of that, we know life is precious. Health is precious. And there are few things we wouldn’t or haven’t done in pursuit of it. Regardless of the cost or what we give up in return. How is the trade off of wearing a mask in exchange for protecting life even a question? If I can wear a facemask (and I do, often, even before COVID) with lung function that has at times been less than 30%, chances are you can too. Afterall skinny jeans, stilettos and neck ties aren’t really comfortable either and we have all tried to squeeze into one of those for far less important reasons than saving lives or without making it a human rights issue. Wear the mask.

19.01.2022 As the cystic fibrosis community celebrates another important step in the fight for better treatments today (see my earlier post), I am excited to be heading to Canberra tomorrow to attend part of Science Meets Parliament. While I am there I will also be speaking with a few politicians to remind them of the importance and need for timely access to new therapies, particularly Orkambi for the CF community. If you have a message you would like me to pass on, I would love you to leave a comment below. This would be particularly helpful if you or someone you love are in the electoral divisions of Brisbane, Queensland or Forrest, Western Australia.

18.01.2022 Are you one of the 52% of Australians who are delaying their healthcare during COVID-19? I know entering a medical facility can feel scary at the moment, but instead of delaying the care you need I urge you to find a way that makes you feel safe and supported to continue seeing your healthcare professionals. That might be:... Phoning ahead to see what infection control protocols are in place. Choosing a quieter time of day to book your appointment Asking the healthcare professional to wear a mask or, Asking if your provider is offering Telehealth. (What else would you add to that list?) All of these things are absolutely ok to do but delaying your healthcare - including those important screening tests - is not. This week the #DontWaitMate campaign is being launched, encouraging Australians to reengage in their healthcare. I would love you to join me in sharing this important public health message with your friends and loved ones by posting a selfie with the hashtag or adding the #dontwaitmate frame to your Facebook profile. https://continuityofcare.org

16.01.2022 This year I have spoken at events all over the world... from the comfort of my lounge room! While it isn't quite the same as meeting and networking in person there are plenty of other benefits of virtual events for patients like me including being able to prioritise my health management and being able to attend many different events in many different places (sometimes even in a single day!) with minimal risk and less pressure on my body. As one of my final speaking engageme...nts for the year, I am pleased to be speaking at the Asia Pacific Patient Congress. Registration is free and can be done via the link below!

15.01.2022 Sometimes there are no words. I have received so many beautiful messages lately from people checking in on me. In a world that’s flooded with words and noise it means so very much that you noticed my silence. The last few months... ok... the last year, has been hard. There have been things going on with my health that we don’t have answers too.... I realised that having to rehash that story every time someone asked if I was ok or how my health was wasn’t serving me. It meant reiterating that things weren’t great over and over. To me that wasn’t and isn’t healthy. Our words are powerful, they too are part of health and wellbeing. We have to be mindful of how we use them - including the stories we affirm to ourselves. It’s also really hard (not to mention exhausting) to give answers when you don’t have any yourself. Sometimes there just isn’t words and you can’t give people the reassurance they want (because they genuinely care) that things will be ok. So often that is a burden that those who live with a chronic illness experience. Let me remind you, it’s not your responsibility to make others comfortable. You have to do you and anything it means to take care of yourself and your spirit. I wanted to jump back online to say hi and thank you for all your lovely messages, thank you so much for being here! JB xx

15.01.2022 Ice cream doesn’t count if it’s for a cause right? If you’re in Queensland you probably know this week should have been Ekka Week (ie. 'show week' for everyone else). And what’s The Ekka famous for? STRAWBERRY SUNDAES OF COURSE! The good news is despite COVID, strawberry sundaes haven't been cancelled. ... And these aren’t just any strawberry sundaes, these sundaes fund life saving medical research at the The Prince Charles Hospital The Common Good Au. Many times I have walked the halls of the hospital at night when there are few people around, reading the articles posted on the walls about the research being done and importantly, the people dedicating their lives to improve knowledge and treatment for people like me. It gives me hope for the future. It takes just 8 sundaes to fund one hour of medical research! So if you're in Brisbane, head out to one of the many pop ups or the drive through at the RNA happening until the 16th and take your bff, partner, kids or your dog to eat life saving ice cream!

14.01.2022 Never forget to CELEBRATE the wins! So happy for my beautiful friend The Naked Gardiner who received THE BEST news for her latest scans. Kathy is a tireless advocate for patient community and is a testament to what early access to new treatments can do for patients!!! I am so happy for you beautiful <3 One of the many things I admire so much about Kathy is her commitment to celebration and gratitude. ... As patients we work hard (understatement of the year) to stay well and achieve our best possible health - a tiresome game of physical and emotional strength. We don't always get the results we are hoping for so when we do - whether it be something as big as positive scan results or as 'simple' as having a good health day, it's important to celebrate and recognise our hard work! What are you celebrating this week?

12.01.2022 Need to learn to multitask? Ask a diabetic. The mental load of diabetes is relentless. It’s a constant evaluation process. Little tweaks to keep ourselves safe and invest in our future health. ... At the back of our minds the tabs are always open. Can I safely do that activity without going low? Do I need a snack first? Is that heart rate elevation from too much coffee or low blood sugars? Did I calculate the amount of carbs in that meal correctly? Was the food label accurate? Are my blood sugars going to be in the ‘clear headed’ range for that important meeting? Have I ordered enough sharps/insulin pens/test strips to get me through that trip away? Do I have a script? Is that injection site ok to use or does it need a break? Will this outfit enable me to inject discretely? Did I eat at an appropriate time and take the right dose of insulin to go to sleep safely? Should I set an alarm just in case? These are just some of the thoughts that run through my head between the 8-15 insulin jabs and finger sticks I do each day. According to @DiabetesAustralia It is estimated that people with diabetes face up to 180 diabetes related decisions every day. That’s more than 65,000 extra decisions a year. Exhausting (and no wonder we have to learn to multitask). This week is National Diabetes week. Diabetes is the fastest growing chronic condition in Australia, with 1.7 million patients living with one of the different types of the condition (including people like me who have cystic fibrosis related diabetes which isn’t T1 or T2). While treatments and technology are improving, we must continue to support patients with the mental load including recognising and reducing the mental health impacts through better mental health services and wider access through reimbursement of technology such as continuous glucose monitoring for all. If you know someone with diabetes, take the time this week to let them know you recognise how hard they work to do something that your body does without you even having to think about it.

11.01.2022 :::::: Did you hear the incredible news? :::::: Finally, Australian patients living with Cystic Fibrosis and eligible gene mutations will be given access to the little pink pills, Orkambi!!! I am very rarely lost for words but knowing just how much lives will be changed by this decision left me emotional and overwhelmed. ... I can’t adequately describe what having Orakmbi has meant for my life. OR how it broke my heart to see others suffering without it - at times with the most devastating consequences. While these little pills are not a cure, for me they have absolutely been a miracle. FINALLY other Australians will experience that (and more!!!) and my heart couldn’t be more happy or grateful. The future is full of better, brighter tomorrows for many (sadly not all) patients living with cystic fibrosis. Can you think of anything more important than to be able to take bigger, easier, more effortless breaths? A HUGE heartfelt thank you and congratulations to those who have played a part in this journey, in Australia and around the world. From those who had a vision for better outcomes for the CF community many, many years ago to those (including many brave patients) who have fought hard to ensure patients have access and the countless steps in between. Words just don’t seem enough. These are the treatments we have waited our entire lives for. It has been a hell of a journey but this is only just the beginning <3 Picture: @ToriJacksonCreative

10.01.2022 Hello my name is... How often has a healthcare professional forgotten to introduce themself to you? I know I couldn't begin to count! And while it isn't intentional, it can really change the way you are feeling in the moment. ... Those simple words make an instant connection that can create trust, respect and help a patient feel more supported. Today is #hellomyname is day, an international campaign which is the legacy of Kate Granger a doctor and rare cancer patient, that reminds health professionals of the value of the simple action of an introduction. So go on, introduce yourself in the comments below or take part in the campaign by posting a selfie with #hellomynameis www.hellomynameis.org.uk

07.01.2022 "The key to success is action and the essential in acton is perseverance" Thank you to all of my beautiful community members who took time to send me messages and photos to take to Canberra last week - if you have ever wondered why I keep talking about this take a moment to scroll in the comments sections of my last posts and see the faces of those waiting for Orkambi. Along with the comments on my page I received a number of private messages from people waiting desperately ...for access to the drug they hope will give them more tomorrows. I am pleased to report my meetings in Canberra were well received. The work the CF community has done to raise awareness of the need for earlier access to new therapies was clear. I emphasised that this issue wasn't going away - as we see an increasing shift towards personalised medicines, the limitations of policy design (as well as the price of new medicines) will cost patients precious time in their ability to access life changing treatments. Whether it be Orkambi, the next generation CF drugs or medications for other patient communities. While this is also a challenge for countries with similar health systems around the world, Australia can do better. We are a leader in innovative science, why can we not also be a leader in innovative, patient centred policy? If there has ever been a time to be placing pressure on government and Vertex about access to Orkambi, it is now. Although it would be unlikely the community could be granted access without going back to the PBAC (which requires a submission), negotiations are still underway. This is positive. A huge and heartfelt thank you to Shadow Health Minister Catherine King, Nola Marino MP, Senator Anne Urquhart and her team, my local member Trevor Evans MP and Ross Hart MP for taking time on what was a very busy day in Canberra to meet with me. If you live with or love someone with #cysticfibrosis please take a moment to click through to their pages and thank these politicians for continuing to listen to our community and being willing to be a voice for our needs. As a community we have come so far in our fight for longer, healthier lives but still we must persevere. We need action - we need more timely and appropriate access to new medicines #weneedorkambi.

07.01.2022 Dear Australia, your health is essential. Don't delay your preventative or routine healthcare - even during COVID-19 ... #DontWaitMate

06.01.2022 Because of Orkambi I celebrated my 30th Birthday. This week, the PBAC (the committee that makes decisions about the public reimbursement of medicines in Australia) met to again consider whether or not they recommend making Orkambi available to those who could benefit from it via the PBS. In Australia this is the only avenue to make the drug affordable for patients. ... This week also marked my fifth Orkambi-versary. Five years ago I was accepted into the clinical trial that changed my life. In March I turned 30. A huge milestone for someone who lives with a disease for which the median age of death has only very recently been slightly increased from 27 years old. Think about that: around half of Australian patients with cystic fibrosis don’t live to see their 30th Birthday. Females also have a life expectancy lower than males. Although these numbers are shocking, even they can’t tell the full story about this disease or the impact it has on those who live with it. What was most remarkable to me about turning 30, was not just the milestone itself but the life I have been able to create around me at this point in my life. A life that would not have been possible without those little pink pills. A life that certainly wasn't my reality at 24 years old. For many of us, Orkambi is SO much more than about numbers. It isn’t just about having more years, but the quality of them. Patients don’t want new therapies so they can admire perfect numbers, patients want new therapies that allow them to LIVE. Because of Orkambi I have enjoyed five years with less pain, less toxic medication crippling my body, dramatically less time in hospital. Because of Orkambi I have been able to be social, make new friends and spend precious time making memory with the ones I love. Because of Orkambi I can get out of bed effortlessly most mornings, I can independently care for myself and can venture outside without support. Because of Orkambi I feel I can be a purposeful, contributing human and do more than take care of my own health day in day out. Because of Orkambi not only did I turn 30 but because of Orkambi I live, and don’t simply work to stay alive. While I make no secret of the fact my health is still not perfect particularly in recent times, when I started this drug I had significant, advanced stage lung damage already done. Orkambi can’t fix that, but it did reduce the impact it could have on my life and slow further damage. That’s what matters to me. Orkambi isn’t a cure, but it sure has been my miracle. Imagine what it can do for when started earlier, when less damage has been done? While the impact of Orkambi is as personalised as the way it works in our bodies, let’s hope that this time, all patients who could benefit from it are granted access and the hope of their own miracle. (Pictured: My beautiful friends holding used boxes of those precious pink pills at my Birthday dinner. They too know just what these pills have meant for my life.)

05.01.2022 Flu season has arrived In Queensland alone there have been 25 deaths, 78 admissions to ICU and 850 hospital admissions (according to news outlets).... Not all of these people would be from at risk communities, the flu can have devastating consequences for ANYONE. For my community though (as with many others it) it is more likely to be deadly. Last year someone gave me a virus (suspected to be a flu strain) that compounded some other health issues I was having. It resulted in lung function loss that I haven’t been able to regain. It has significantly impacted my quality of life. Let’s be clear: lung function loss = loss of years of life. I was one of the lucky ones. Members of the Cystic Fibrosis community loose their life to the flu EVERY year. I need your help to keep myself and my friends alive this flu season. If you’re unwell this flu season (or your kids are unwell), STAY AT HOME until the infectious period has passed. You are NOT a hero for soldiering on. It might be inconvenient to stay home for a few days but it might save someone else weeks in hospital or even their life by reducing the ability for the virus to spread amongst the community. Share this post, not your virus. #knowwhatyourflucando (This is a message about community health and saving lives once you are unwell. It applies to everyone vaccinated or not. Thanks though to TerryWhite Chemmart Gasworks for doing their bit to help keep me stay safe this #fluseason )

04.01.2022 Dads and their Daughters. Each person in our life brings unique gifts and lessons to our world. I believe that is what is truly meant by the saying "It takes a village". Everyone has talents and skills to offer. The relationship between a dad and his daughter is often a special one. I am grateful this has been the case for me. Generally, I also see the role dads play in caring for children (and adults) with chronic illness as different to that of mums or women. Perhaps it's... un PC to say this, but I think men often carry the burden in different ways. My dad and I have got closer as I have got older (read: less rebellious). My dad is the one I call when I need a pep talk or just some sound life advice. My dad has always been the grounding figure in my health team and the one that taught me to keep calm and carry on because whinging really won't get you far; that it's ok to feel sorry for yourself when times are tough, but don't stay there too long. My dad is the one that talks logic to me when I am overwhelmed or emotional and on many occasions has had to reason on my behalf with medical professionals and advocate for my health needs - a job that's never easy. My dad was always the one to remind me to work hard but put my health first. I watched him take time off work to share the responsibility of taking me to doctors appointments or be with me in hospital - where he diligently brought me coffee/hot chocolate every morning (not sure if that was for my sake or the nurses though!). As recently as last year my dad dropped his work for a week to help me with home IVs while my husband was away. My dad is always the first one to remind me of all the times I have picked myself up and found a way when everything seems too big or too hard. And for all the loving, caring things my dad does he is also the one that I can always count on to give me a hard time or have a laugh at me when I am taking myself too seriously. I guess that's a dads right for all I have put you through and I should laugh at the dad jokes sometimes. I might have been a day late to share your Birthday with you - and let's be honest I have kept that tradition going by always forgetting to get your birthday gift on time, but today I celebrate you and all you have done for me! Happy Birthday Dad!

03.01.2022 The past few years have been a really bumpy ride... even without adding the complexities of a pandemic. That has meant that I have pulled back a bit here. I am so grateful for all the beautiful messages and emails I have received checking in on me in that time. It makes me emotional thinking about the kindness and support so many have offered.... A little while ago I was honoured to be interviewed for the Rare Cancers Australia podcast. The team at Rare Cancers have taught me so much about advocacy and understanding the health system in Australia. The founders Richard and Kate Vines have inspired me with their vision and dedication to patients and been incredible mentors to me over the past few years. It seemed appropriate to share with their team some of the challenges I have faced including (spoiler alert!!!) a bit about the road to accessing a new therapy earlier this year. I hope you enjoy listening as much as I enjoyed speaking to Emily.

03.01.2022 Hell to the YES! FEELING your FEELS is so important, especially when you live with a chronic illness. Just a little end of week reminder that being positive all the time is not practical, realistic or HEALTHY. How would it feel if you took that pressure off yourself lovely?

01.01.2022 There’s just one more sleep until the Rare Cancers Australia virtual 2020 CanForum. RCA do incredible work advocating for better access pathways to medicines and innovative medical technology. While their focus is Rare Cancers, the work they do will benefit ALL patients now and importantly, into the future. Particularly patients (like the CF community) whose futures depend on high cost precision and genetic based therapies. If you would like to hear about the vision RCA has... for our healthcare system, you can register for this free virtual event via the link below. Thank you RCA for all you do. For your dedication and for believing in a future where patients can experience the benefit (and wonder) of the treatments we have been waiting desperately for in the most timely way. For recognising that delay to access costs lives and life. (PS Those of you who have followed me for a while might recognise a familiar face in this clip )