Sickle Cell Talks With Agnes

The hurdles in sickle cell disease are, and have always been, innumerable. In spite of everything, I’m certain that the pursuit of better days for #SickleCell disease will continue with an irresistible momentum. #sicklecellawarenessmonth

Two weeks ago, we hosted the first Sickle Cell Pharma Forum at Parliament House in Canberra. Thank you for joining us at this crucial event created to enhance the lives of individuals living with Sickle Cell Disease in Australia. We hope you had an enjoyable and enriching experience. To help us improve future events, we invite you to participate in a short survey. Your feedback is invaluable and will guide us in enhancing our future events. The survey will take just a few minutes to complete via this link. https://lnkd.in/gfMuGGvg We appreciate your time and feedback. #SickleCellPharmaForum #SCDPharmaForum #AustraliaSickleCell #HealthPromotion

As we anticipate the upcoming Sickle Cell Pharma Forum on 10th September 2024, we are thrilled to announce that Dr Marguerite Evans-Galea AM will be sharing insights on Clinical Trials in Australia. Join us for a stimulating discussion with experts from Australia and the US, exploring avenues for introducing Sickle Cell curative therapies in Australia. The recent FDA approval of CASGEVY™, a CRISPR/Cas9 cell therapy in the US, raises the question - what options are available for Sickle Cell Disease in Australia? Exciting possibilities lie ahead as we delve into this topic at the forum. Mark your calendars for this insightful discussion moderated by the esteemed Dr Marguerite Evans-Galea AM, a trailblazer shaping Australia's STEM ecosystem. Dr Marguerite Evans-Galea AM is an influential leader change-making at the interface of industry, academia, and government. She is Director of Australia’s Cell and Gene Catalyst, a joint venture of the industry peak bodies, AusBiotech and Medicines Australia. Dr Evans-Galea has led international research in cell and gene therapy for inherited diseases in the United States and Australia and established and led high-impact STEM policy and workforce initiatives with the Australian Learned Academies. Playing a pivotal role in elevating diversity and inclusion in Australian STEM to the national agenda, Dr Evans-Galea cofounded Women in STEMM Australia. She also represented Australia as the inaugural keynote for the APEC Women in STEM & Entrepreneurship meetings and served on the Victorian Ministerial Council for Women’s Equality and the SAGE Expert Advisory Group. Dr Evans-Galea has received awards for her research and leadership and is an inductee of the Victorian Honour Roll of Women and a Member of the Order of Australia. Don't miss out on the opportunity to be part of this engaging forum. Register for free before 3rd September via this link: https://lnkd.in/g6fyqUQH #SickleCellAwareness #SickleCellForum #SickleCellDisease #Health #TeamASCA

Since my medical training days, we have made tremendous strides in developing new treatment options for #SickleCellDisease (SCD), which disproportionately impacts people who are Black or African American. Today, we have a small arsenal of medicines that can alleviate the symptoms of the disease – and even target its root cause. Despite these tremendous medical advancements, patients and their loved ones keep coming up against an unjust healthcare system. We must dismantle the racial stigmas that continue to impede care, and we must keep innovating to create new treatment options. If we do not, we will continue to fail many Black families. Ahead of #SickleCellDiseaseAwarenessMonth, I urge you to read more. #Innovation #SCDAdvocacy #HealthEquity

For over 15 years, my focus has been advocating for better services for individuals affected by Sickle Cell Disease in Australia and beyond. Recently, I had the opportunity to watch #SupaCell, shedding light on this condition that has been a part of my family's journey for over a decade. A few weeks ago, I was honored to connect with Mawunyo Gbogbo , who is also affected by sickle cell disease through a family member, and has written this article about #supacell. In her article, I shared our family's experience, my work at Australian Sickle Cell Advocacy Inc (ASCA), and details about the upcoming Sickle Cell Pharma Forum 2024 See the full article via this link: https://lnkd.in/grpwmQ8T Join us on 10th September for a free roundtable discussion to collaborate on enhancing services for those impacted by sickle cell disease in Australia. Register by 3rd September using the link: https://lnkd.in/gGXDawne. Your participation will help us plan effectively. Thank you to #Interpharm for supporting our event. #SickleCellAwareness #SickleCellDisease #PharmaForum #Australiansicklecell

As a sickle cell advocate, I have seen the struggles and issues we have with the 500mg of Hydroxyurea capsules. My family is equally affected. Our family experience started in 2009 when our daughter was diagnosed with sickle cell disease in Western Australia. During that period, the children's hospital in Perth were compounding the capsules with a shelf life of about 30days. At that period, being new to the sickle cell family, I never thought there was any issues with Hydroxyurea. In 2011 we moved to Sydney NSW and again the hospital was able to compound this drug for us. However when I did a university research assignment during nursing studies, I deliberately took on Hydroxyurea in the management of sickle cell disease. This assignment made me understand more about Hydroxyurea and that in Australia specifically, it is not registered on the PBS to be used for sickle cell disease. It was registered as a cancer drug, it has been repurposed to be used for sickle cell warriors. In 2014, I started my Advocacy work and moved to Melbourne Victoria to chase a cure for our daughter. From 2014, I have heard different stories of how warriors and families struggle to get the right doses of Hydroxyurea. In Melbourne, the children's hospital had no compounding facilities for cytotoxic drugs hence we were told to dissolve the drug at home ourselves. With no experience in "compounding" drugs soon enough Hydroxyurea stopped working for our daughter. The fetal haemoglobin started dropping. Our hospital visits increased and we had to change to routine blood transfusion to manage nasty complications of sickle cell disease SS. From the age of 8, our daughter became dependent on Red Cell Exchange and we stopped using Hydroxyurea. Healthcare professionals equally have issues prescribing the right doses based on weight for different warriors. Some hospitals here in Australia have to import smaller doses to make it easy to solve this problem. However the smaller doses are not on PBS and are costing more for warriors and their families. So with these issues still ongoing, one doctor on this platform suggested Siklos. Siklos® has been studied and proven safe and effective for adults and children 2 years of age and older ( siklossa.com) Siklos has the same components as Hydroxyurea. It is: Scored Breakable Dissolve in water or swallow whole 100 mg & 1,000 mg Strengths Flexible Dosing No compounding needed💯💯 This year Australian Sickle Cell Advocacy Inc (ASCA) will support pharmaceutical companies intending to have Siklos registered in Australia. Having this drug will not only help healthcare providers in streamlining the prescription process but most importantly sickle cell warriors will be getting the right doses that will work effectively in managing sickle cell disease. 💯💯 Do you have a story about Hydroxyurea? Contact me on hello@agnesnsofwa.com.au #SickleCellExpert #SickleCellAwareness #SickleCellDisease #StrongerPBS

There's so many issues with the prescription of Hydroxyurea for sickle cell disease around the world mainly because the most common dosage is in 500mg. I have discussed this issue for years going as far as contacting Bristol Myers Squibb as to why we don't have other smaller doses available in Australia. Their final response was an update that they have sold global rights to another company. We have not yet contacted that company because our focus now is to try and assist pharmaceutical companies dealing with Siklos to have this drug registered in Australia. Siklos is Hydroxyurea but in tablet form. This drug has been on the market for a while now but not registered in Australia. Help us advocate to have Siklos registered in Australia. Email your support to info@aussicklecelladvocacy.org 🙏🏾🙏🏾 #SickleCellAwareness #SickleCellDisease #SickleCellExpert #Australiansicklecell #StrongerPBS Mark Butler MP Australian Government Department of Health and Aged Care Medicines Australia

Excited to support Zambian Network for Sickle Cell Amplified Voices & Advocacy Ltd and all sickle cell advocates in Zambia hosting The Sickle Cell Disease Symposium on July 17th at Radison Blu, Lusaka , Zambia. Organized by The Ministry Of Health (MOH). Calling all supporters of sickle cell warriors and their families to register and be part of changing the different misconceptions of sickle cell disease in Zambian. Registration link here 👇🏾👇🏾 https://lnkd.in/gJrX6EQF Time: 8:30am CAT Date: July 17th, 2024 Location: Radison Blu, Lusaka, Zambia Don't miss out! Register today! #ProudlyZambian #SickleCellAwareness #SickleCellDisease #TeamZnsava

This September Australian Sickle Cell Advocacy Inc (ASCA) will be hosting a sickle cell awareness forum to connect with #Pharma and other #Stakeholders in Australia. The event to be held at Parlaiment House in Canberra will be an opportunity for sickle cell warriors and families to engage with these stakeholders and brainstorm how sickle cell disease services / therapies can be improved in Australia. The event will be held on 10th September 2024 from 9am to 1pm at Parliament House Canberra. #NoteTheDate #Change Contact us for #partnership #opportunities info@aussicklecelladvocacy.org Paul Cross Petrina Keogh Simon Higgins Monica Ferrie Deidre Mackechnie #Australiansicklecell #SickleCellAwareness #SickleCellDisease

Our booth is set up and the Global Action Network for Sickle Cell and Other Inherited Blood Disorders (GANSID) is looking forward to meeting with clinicians and people with interest in bleeding disorders in the next few days at #ISTH2024. #GANSID: Bringing the Inherited Blood Disorders Community together. International Society on Thrombosis and Haemostasis (ISTH)