The National Forum of ESRD Networks Kidney Patient Advisory Council has developed a poster to encourage their fellow patients to stay strong and continue to be diligent about using COVID-19 safety precautions. They understand the challenges patients have faced in 2020 and they want to send an encouraging message to stay safe and healthy. Please consider printing this poster and sharing it with your kidney patients. The poster is free to download from the Forum website at https://esrdnetworks.org/resources/coronavirus-information-resources/resources-for-kidney-patients/covid-19-poster-for-kidney-patients/view.
UCLA tells us: “Second ever Virtual Kidney Fair on March 14th, 2021 from 11am-1:00pm PST. This is a FREE event! With many joining from all over the world, this truly is going to be a global event! We will have different guest speakers, fun activites, our popular 2K/5K Spirit Walk/Run… virtual style, and much more! Also, we will be introducing our mascot – Mr. Bean… you won’t want to miss out! Mark your calendars! Registration coming soon.” Get the latest news at https://www.uclahealth.org/core-kidney/upcoming-events.
The OPTN Kidney and Pancreas Transplantation Committees will host a November 23, 2020 webinar on Information for Transplant Candidates about Upcoming Changes to Kidney and Pancreas Policies. These changes are intended to create more consistent access to kidney, pancreas, and kidney-pancreas transplants. The new policies include updates to the definition of medical urgency, and changes to the allocation of organs and prioritization of candidates, which will be based on distance rather than regions. Organs from Alaska will be allocated based on distance from Seattle.
The new policies will take effect December 15, 2020, and transplant centers can revise their candidate urgency information to take advantage of the new policies starting December 1. Find details about the changes at https://optn.transplant.hrsa.gov/news/pre-implementation-notice-removal-of-dsa-and-region-from-kidney-and-pancreas-allocation-to-go-into-effect-dec-15/ and register for the webinar at https://register.gotowebinar.com/register/2542491307617944591.
The Network 16 and Network 18 Patient Newsletters for Fall 2020 have been posted to the Network websites, in both English and Spanish. They include articles on the Medicare Open Enrollment Period (which is open through December 7, 2020), Vocational Rehabilitation, and Dialysis Facility Compare, plus short notes on heart health and fluid management, filing a grievance, and (free) subscriptions to the Network Newsletters and blog. The Network 18 Newsletter also includes a short note on volunteering to help the Network improve patient care. Find the English and Spanish versions of the latest Newsletters at https://www.nwrn.org/patients-a-family/ptedres/quarterly-patient-newsletter.html for Network 16, and https://esrdnetwork18.org/patients/newsletters/ for Network 18.
CDC reports that the best way to protect yourself from the flu is to get vaccinated every year, and has begun a campaign to encourage everyone to get the flu vaccine, especially those with weakened immune systems like CKD patients, who have an increased risk of severe illness from the flu, even without considering COVID-19 – which you can get along with the flu. Find campaign resources like the animation below, in English and Spanish, at https://www.cdc.gov/flu/resource-center/freeresources/graphics/animated-fight-flu-punch.htm .
AAKP is supporting a research initiative with Relavo, a medical device company aiming to make peritoneal dialysis safer and more accessible by reducing the risk of peritonitis, which hospitalizes 15% of PD patients annually. Relavo is a recent winner of the KidneyX Innovation Accelerator Phase 2: Redesign Dialysis Competition, and of the KidneyX Patient Innovator Challenge. AAKP and Relavo are seeking patients and caregivers with CCPD experience that are over 18, currently live in the US, and read/understand English, to participate in an online survey. The results will be used to ensure that a Relavo device, the PeritoneX, addresses what matters most to patients and caregivers. Learn more about PeritoneX, which disinfects CCPD tubing during treatment set-up, at https://relavomedical.com/. Find the survey at https://www.surveygizmo.com/s3/5787206/Relavo-Device-Survey.
AAKP will hold their 45th annual National Patient Meeting online September 11-12, 2020 on the theme Patient Voice – Patient Choice. Registration to the virtual event is free this year. Find more information and register at https://aakp.org/2020-national-patient-meeting-2/.
Home Dialysis Central has published a new blog post on The Power of the Patient Voice that cites many examples of how influential the voices of patients have been in CMS policies and regulations, especially those around home dialysis. Find the post at https://homedialysis.org/news-and-research/blog/369-the-power-of-the-patient-voice. In it they mention the ESRD PPS Proposed Rule on Medicare coverage and regulations that CMS publishes every year, and that Home Dialyzors United will next month remind all dialysis patients of your right to comment, and how to do it. If you’d like to read ahead, find a link to the 2021 PPS Proposed Rule at https://nwrnbulletins.wordpress.com/2020/07/10/9-4-comments-due-re-proposed-changes-to-qip/.
ESRD Networks 16 and 18 have prepared their Summer 2020 patient newsletters. Major articles and sidebars for summer include:
- COVID-19: a New World for Dialysis Patients.
- Telehealth: How to connect virtually with your healthcare providers.
- Are you up to date on all your vaccines?
- How to Report Patient Grievances.
- How to Get Our Newsletter! and Join Our Blog!
- Introduction to The KidneyHub.org Mobile Tool (Network 16).
- Invitation to Get Involved! in helping the Network improve patient care (Network 18).
Find Network 16 patient newsletters, in English and Spanish, at https://nwrn.org/patients-a-family/ptedres/quarterly-patient-newsletter.html.
Find Network 18 patient newsletters, in English and Spanish, at http://www.esrdnetwork18.org/patients/newsletters/.
The ESRD NCC will present a June 2, 2020 Patient Town Hall on You Too, Can Manage Transplant. Patients will share their experience with pre-transplant preparation, recovery, and adjusting to life after receiving a transplant. For details see below: