9/7 CMS Webinar on Medicaid/CHIP Renewals for Native American & Alaska Native Populations

CMS will present a September 7, 2023 webinar on Medicaid and CHIP Renewals: Reaching Out to American Indian and Alaska Native Populations. RSVP at https://cms.zoomgov.com/webinar/register/WN_-uRUL8P0QFW2_iRCvfqT8g. For more information and toolkits, including links to English and Spanish resources on Reaching Kids and Families, Disenrolled patients, and Asian American, Native Hawaiian and Pacific Islander, Hispanic/Latino, Black American, Aging & Disability, and Rural Populations, see https://www.medicaid.gov/resources-for-states/coronavirus-disease-2019-covid-19/unwinding-and-returning-regular-operations-after-covid-19/medicaid-and-chip-renewals-outreach-and-educational-resources/index.html.

6/15 HDU Webinar on Advocating For Your Best Care

HDU and others will present a June 15, 2023 Dialysis At Home Let’s Talk About It webinar on Advocating For Your Best Care During Medical Procedures in hospitals and long-term care facilities. Find more information and register at https://www.homedialyzorsunited.org/so/24OYlNJJd.

6/14 CMS National Stakeholder Call to Action on Medicaid and CHIP Renewals

CMS will host a June 14, 2023 National Stakeholder Call on Medicaid and CHIP Renewals at 10 am Pacific Time, introducing newly published resources on keeping people covered as states restart routine Medicaid and CHIP renewals. The call is open to all national, state, and local stakeholders. Resources include:

• CMS Press Release
• CMS Letter to Governors
• State Strategies to Minimize Terminations
• All Hands On-Deck Factsheet for Medicaid Renewals
• Call to Action instructions for people with Medicaid and CHIP coverage, for the Public and Private Sector, for States, for Members of Congress and State/Local Elected Officials, for the Health Care Community, for Grocery stores, Retailers, and Small Community Businesses, for Advocates, Civil Rights Groups, Faith Communities, Senior Centers, and other Community Organizations, for Unions, for Employers, and for Philanthropic funders
• A Communications Toolkit is provided at https://www.medicaid.gov/resources-for-states/coronavirus-disease-2019-covid-19/unwinding-and-returning-regular-operations-after-covid-19/index.html

CMS avers that all parties must do everything in their power to help people stay covered. Register for the Call at https://cms.zoomgov.com/webinar/register/WN_tySvAeHDQJG7XWnL1W8J3A.

Patient-to-Patient COVID Poster

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.

HDC Blog Post re Patient Power

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/.

3/24 AAKP Healthline on AAKP Ambassadors

In honor of National Kidney Month, AAKP Healthline will present a March 24, 2020 webinar on AAKP Ambassadors: Thriving with Kidney Disease and Inspiring Others.  The program will feature current AAKP Ambassadors discussing “What I know now that I wish I knew when first diagnosed,” “Why it is important to be your own best advocate, and “How I am making a difference through AAKP.”  For details and registration see https://aakp.org/programs-and-events/aakp-healthline/.

12/7 First AAKP Annual Fun Walk

AAKP will celebrate their 50th Anniversary on December 7, 2019 by initiating their first AAKP Annual Fun Walk.  The formal celebration will take place in Tampa Bay FL with a one-mile walk, music, exhibitors, and family fun activities, but you can celebrate by yourself or as a team wherever you are, nationally, globally, or virtually, by staging your own Fun Walk.  For details see https://aakp.org/programs-and-events/fun-walk/.

AAKP/FDA Medical Device Survey

AAKP’s Center for Patient Research & Education (https://aakp.org/center-for-patient-research-and-education/research/) is collaborating with the FDA to foster engagement with patients, caregivers, and patient advocates throughout the development, evaluation and surveillance of medical devices in order to gain insight from patients and caregivers about their experiences living with their diseases as well as experiences with medical devices intended to diagnose and treat their medical conditions.  To further this effort, AAKP asks members to take a brief anonymous survey about the devices you have used.  Find the survey at https://www.surveymonkey.com/r/GGTZNKX.

NW16 11/26 Recruiting Patient Advisory Committee Volunteers

ESRD Network 16 is recruiting for new volunteers to serve on our Patient Advisory Committee (PAC).  PAC members:

• Advise on Network education and outreach
• Assist with Network Quality Improvement Activity design and interventions
• Meet with Medicare (CMS) on conference calls to provide feedback from a patient perspective

Most PAC activities are conducted by phone call and email, though there are occasional opportunities for in person meetings.  Any travel to in-person meetings will be funded by the Network.

Please share the Informational Flyer at https://s3-us-west-2.amazonaws.com/nwrn.org/files/PAC/Nw16PACFlyer1118.pdf, and the Application form at https://s3-us-west-2.amazonaws.com/nwrn.org/files/PAC/Nw16PACForm1118.pdf, with patients and care partners in Alaska, Idaho, Montana, Oregon, and Washington that might be interested.  Application forms are due to the Network by November 26, 2018.

NW16 8/14+ Donate Life NW Volunteers

Donate Life Northwest is dedicated to helping transplant candidates maintain hope while waiting for an available matching kidney.  They offer training to volunteers for various situations.  Their upcoming training, volunteering, and celebration schedule includes:

• August 14, 2018 – School Speaker training in Portland OR
• August 15, 2018 – Volunteer Orientation in Bend OR
• August 16, 2018 – School Speaker training in Portland OR
• September 4, 2018 – Volunteer Orientation in Portland OR
• September 8, 2018 – Volunteer Opportunity in Vancouver WA
• September 8, 2018 – Donor Family Picnic in Salem OR
• September 13, 2018 – School Speaker training in Eugene OR
• September 13, 2018 – Volunteer Orientation in Eugene OR
• September 16, 2018 – Volunteer Opportunity in Portland OR
• September 23, 2018 – Volunteer Opportunity in Portland OR
• November 7, 2018 – Lifesavers Breakfast

For more details, see https://mailchi.mp/donatelifenw.org/sharing-hope-this-summer.  This web page also introduces their new Latino Outreach Coordinator, Donor stories in English and Spanish, winners of their recent raffle, and information on including Donate Life Northwest in your estate, insurance, or financial plans.