Sickle Cell Society’s Post

Let’s talk about kidney number 2, or 3, or 4… This is not an easy subject. I know, since I had my second kidney transplant less than one year ago. Besides the physical battle, the emotional and mental turmoil might have been, and still remains, the tougher one. Needing a transplant means that your organ failed - which per extension means you failed in managing your original disease. This is hard to think about, and many of us are ashamed and feel like burdens due to that definition. So imagine what it feels like to fail a second time - and this time with an organ that was given to you by someone you know and love, or from someone who died, while you go on living. My wish for this year, 2024, is that the transplant and kidney community starts to understand and prioritize the time POST transplant (for both recipients and donors/donor families) as much as it has focused on the importance of getting people in end stage kidney disease their first transplant…. By keeping more people on their transplants LONGER, we reduce costs by 5-10 x per year (vs dialysis), and the quality of life is improved immensely. In addition, we allow more people to get access to the limited pool of organs that currently only allow for 25k kidney transplants per year, while 125k patients die annually on dialysis… One Transplant For Life United Network for Organ Sharing (UNOS) Department of Surgery, Columbia University Lyfebulb Veloxis Pharmaceuticals, Inc. CSL Bristol Myers Squibb Hansa Biopharma Astellas Pharma US Sanofi Novartis DaVita Kidney Care Fresenius Medical Care CareDx, Inc. Eurofins IKONA Health Lisa Hehenberger Michael Hehenberger Eledon Pharmaceuticals, Inc. ITB-MED Sana Biotechnology, Inc. Vertex Pharmaceuticals #transplantation #kidneydisease #innovation #advocacy

An 'untenable stalemate'... The clear and obvious demand and recent major reports all point towards the need for sustainable increased funding for #NHS #primarycare #property. This article highlights what is happening on the ground...not enough if anything at all!

National Minority Donor Awareness Day (The first day of National Minority Donor Awareness Week) is observed at the beginning of August each year. This event is meant to honor the contribution of donors and donor families from a wide array of cultural and ethnic backgrounds, while also highlighting the urgent need from members of minority communities to register themselves as organ, eye, and tissue donors. Although it is not necessary to the success of a transplant for a donor and recipient to be from the same racial or ethnic group, transplant success rates increase when such a match can be made! Blood type is one of the most significant considerations made by healthcare providers when matching donors to recipients, and because certain blood types tend to be more prevalent among any given racial or ethnic group, there is a higher likelihood of a recipient and donor matching if they are both members of said group. Again, this is not absolutely necessary, but any opportunity to increase the number of successful transplants should be taken. We encourage you to raise awareness on this important issue in observance of this annual event!

The Life Sciences industry has made incredible strides in the clinical treatment of rare diseases, such as Cystic Fibrosis (CF). Remarkably, the median age of survival for people with CF has been extended from late 20s in the 1980s to almost 60 years today! As the industry advances treatments such as TRIKAFTA®, there is tremendous opportunity to partner with advocacy organizations, rare disease communities, and CX experts to elevate the patient experience. The Cystic Fibrosis Foundation is doing important work in transforming the human experience, not only addressing patient’s medical needs but also financial, social, and racial equity issues for the family, ensuring a comprehensive support system for the community. The Foundation accredits and provides funding for more than 130 CF care centers, both pediatric and adult, located at hospitals across the country. Families can access support from experts who assist with navigating legal, insurance, and financial issues. There is also a focus on Motivational Interviewing training for care teams, encouraging open-ended questions to understand the daily challenges and experiences of individuals living with CF and promote personalized and empathetic care. Check out this article to learn more about the important work of the Cystic Fibrosis Foundation in transforming lives through compassion and advocacy. #CysticFibrosis #LifeSciences #RareDiseases #PatientExperience #Healthcare #Advocacy #Compassion #TransformingLives

⏩2024 Healthcare Change Maker: Madi Vanstone https://lnkd.in/gmhEHH5U For more than half of her young life, Madi, 22, has been fighting for access to life-changing treatments for #cystic #fibrosis. Diagnosed with the condition at 8 months old, Madi had the opportunity to enrol in a clinical trial for a novel CF treatment called Kalydeco a decade later. Just one problem: after the trial ended, Madi could no longer receive the costly drug without paying for it. She and her mother spent two years lobbying the Ontario government before they agreed to cover it. In the meantime, Madi’s family, supported by fundraising efforts in her community, had to cover a good portion of the drug’s $300,000 annual cost. [see the full article for more] #specialtypharmaceuticals #Canada #patients #patientsfirst #healthoutcomes #data #healthcare #pharmaceuticalindustry #outcomes #innovation #access #drug #drugaccess #realworldevidence CC: Beth Vanstone Cystic Fibrosis Canada / Fibrose kystique Canada CF Get Loud

It was reported in the Health Service Journal this morning that #NHS trusts are being offered up to £4m to make a last-ditch attempt to reach A&E targets: https://lnkd.in/eADAKS_w with national leaders ‘desperate’ for the NHS to hit this in 76% of cases in March.   If only it was as simple as that! Having recently been leading the emergency and medicine division at an NHS Trust in the South of England on behalf of Acumentice I was supporting the local teams overcome the most challenging issues on the ground, and I’m not convinced last minute additional capital funds will significantly improve the position by the end of this month.   In this 5-month deployment back on the NHS frontline, I led and supported excellent clinical teams deliver acute care during a challenging winter, which saw the highest number of A&E attendances on record. Working closely with clinicians, I led on many initiatives such as improving patient flow through reconfiguring the medical bed base which was a great success. However, the challenge of achieving the A&E 4-hour target is a system-wide one. Like many acute hospitals, a high number of patients were in an acute bed that do not need to be there, i.e., patients that do not meet the Criteria to Reside.   Therefore, it’s not surprising to see experienced community and mental health trust chief executives openly criticise this capital incentive for A&E performance. At Acumentice we always work to deliver initiatives that drive real long term value for our partner trusts and patients and we look forward to seeing the 2024/25 operating plan (when it is finally published), hoping it has more to offer for sustained improvement in both acute and #electivecare.

The Donation and Transplant System Explorer has been updated with data through March 2nd, 2024. Some additional trends/stratifications include: - Graft Survival stratified by Adult vs Pediatric recipient - Graft Survival stratified by whether the donor underwent (presumed) Normothermic Regional Perfusion (NRP) - Non-Use/Non-Utilization rates stratified by whether the donor underwent (presumed) Normothermic Regional Perfusion (NRP) - Non-Use/Non-Utilization rates stratified by whether the donor was HCV NAT/COVID-19 positive - Deceased Donor Transplant Rate/Waitlist Mortality Rate for Kidney After Liver (KAL) Safety Net candidates

Talk about succession planning! What inspiration for anyone joining the Trust now.

🌟 We recently helped a patient facing financial barriers to his cancer treatment. With a balance of $2,100 for #Keytruda infusion, our dedicated patient advocate stepped in. Through persistence and care, we secured a $10,000 grant for him, easing his financial burden and ensuring continued treatment. This is what Atlas advocacy is all about – turning challenges into victories. #PatientAdvocacy #HealthcareHeroes #MakingADifference https://hubs.la/Q02bKkhw0

Let’s acknowledge the role blood donors play in healthcare and explore some of the innovations in blood collection and storage, including apheresis pathogen reduction technologies, which are improving the outcomes for both donors and patients who benefit from the donated blood. Read the blog to know more: https://ow.ly/aCiJ50SqOtk #MDForLives #BloodDonation #HealthcareHeroes #MedicalInnovation #BloodDonors #Apheresis #MedicalResearch #HealthTech #PatientCare #DonateBlood #PaidSurveys #MedicalSurveys