Increasing Rates of Patients on a Transplant Waitlist QIA

Transplant Medication Resources:

• American Society of Transplantation (AST) Medication Access and Drug Shortage Concerns During the COVID-19 Pandemic (PDF)
• Patients should always contact the transplant center that they are working with. There are financial coordinators that may be able to provide advice.
• Most pharmaceutical companies have assistance programs for their medications.  It can sometimes be a lengthy process and take a month or two for approval, but often patients can get the medications for free:
  
  • Astellas Pharma US, Inc.: https://www.astellas.com/us/patients-and-caregivers/resources-and-contacts
  • Novartis: https://www.novartis.us/our-products/patient-assistance
  • Pfizer: https://www.pfizerrxpathways.com/
  • UNOS link to pharmaceutical company patient assistance phone numbers for frequently prescribed transplant medications: https://transplantliving.org/financing-a-transplant/prescription-drug-assistance/
• COBRA: Even though the premiums are extremely expensive, patients can apply for premium assistance through the American Kidney Fund (AKF). If the patient qualifies, AKF may reimburse patients for the medical premium only.
• Medicare will cover medication costs for the first 3 years.  The patient may also be able to move into a Medicare supplement plan.
• Good Rx (https://www.GoodRx.com): Provides coupons to lower the cost of prescriptions.
• National Kidney Foundation prescription resources: https://www.kidney.org/patients/resources_Prescription
• Cornerstones4Care.com: https://www.cornerstones4care.com/. This is a program for patients requiring insulin after transplant.
• NeedyMeds: https://www.needymeds.org/: Provides information on assistance for all medications, not just transplant medications.

Interventions/Educational Resources

• Patient Education: Partnering Along the Road to Transplant (English/Spanish): This educational handout can be used to educate patients on ways they can improve communication with their healthcare providers during the transplant process. 
• 2020 Transplant Referral Guide: This guide provides criteria and guidelines for pursuing a kidney transplant in each of the six states in the Network 15 region (AR, CO, NM, NV, UT, and WY). 
• The National Forum of ESRD Networks Kidney Transplant Toolkit (PDF) 
• The National Forum of ESRD Networks Transplant Peer Mentor Program: Dialysis Facility Toolkit (PDF)
• Tips from theTransplant Centers (PDF)  
• Consejos del Centro de Transplante (Spanish) (PDF)
•  Are You Considering a Living Donor? (PDF)
• ¿Considera Tener Usted un Donante Vivo? (Spanish)
• Considering a Transplant? Let's Get Started (PDF)
• ¿Considerando un Trasplante? Vamos e Empezar (Spanish) (PDF) 
• Why Not Consider a Transplant? (PDF)
• Consider This... (PDF)
• Did You Know? (PDF)
• ¿Sabías usted que? (Spanish) (PDF)
• Kidney Transplant Options (PDF)
• Transplant Center-Specific Education
  • 2020 Transplant Referral Guide (PDF)
  • Transplant Tracker (at-a-glance) (XLSX)
  • 5 Steps to Transplant Tracker (XLSX)
• Fixing Paco is a website dedicated to educating the public about the leading causes of kidney disease, how to prevent it, kidney transplant as a treatment option, the need for living organ donors, and the importance of proactive patient involvement in care.There are two components to the website:
  • A public service announcement (PSA) campaign  that carries a strong call to action.
    • Get the Facts (0:30)
    • Get the facts! Get Checked! Get Help! (0.60)
  • A web series that tells the "story of family, big decisions and second chances."
    • Trailer
•  

• • Episode 1: “El Mil Usos” (14:03)
    Paco Fuentes, a busy handyman, husband and father suffering from end-stage renal disease and on dialysis, is ready to learn about what’s involved in kidney transplantation.

• • Episode 2:“Dreamy Dialysis Technician” (9:15)
    To find out if transplantation is an option, Paco and his family visit his doctor at the dialysis center; and later meet Claudia, a transplant coordinator who explains the role of the transplant team and the reality of what Paco can expect.

• • Episode 3: “Do As I Say, Not As Tia Julia Does” (10:13)
    With his energy low and barely able to work, Paco and his family meet with a transplant surgeon to begin the medical evaluation and transplant process, while Tia Julia continues to be a bad example, by not being compliant and proactive with her health.

• • Episode 4: “I'm Broken, So You Fix Me” (7:40)
    Paco begins the medical evaluation process to determine his eligibility for a kidney transplant; he learns how long the wait can be for a deceased donor kidney; and is reminded of how important it is to stay proactive with his health while he waits.

• • Episode 5: “Dad, I Want To Give You My Kidney” (9:05)
    Paco and his family are elated that he’s eligible for a transplant, but the reality of how long Paco might have to wait for a deceased donor kidney makes his family decide to explore living donation in hope of “fixing” him more quickly.

• • Episode 6: “How Daisy Got Her Backbone Back” (8:04)
    Paco’s family begins their own medical evaluation process to find out if any of them are a suitable match and can donate a kidney to him, while Daisy has had it with Tia Julia’s lack of compliance.

• • Episode 7: “Check!” (8:32)
    Margie works with Paco to learn about transplantation and dialysis, while Paco’s family and friends try to help him through his ups and downs with their support and encouragement for staying healthy until his transplant.

• • Episode 8: “I'm Ready To Fix You” (7:29)
    As the big day arrives for Daniel’s living donation to Paco, everyone in the family is nervous but excited, and Paco realizes the big responsibility he’ll have to take on as transplant recipient.

• • Episode 9: “Now I Need Therapy, And You're Coming With Me” (12:14)
    Paco’s transplant was a great success, but the depression he’s feeling from the side-effects of his medication leads Carmencita to give Paco a push to reach out for help, and he finds an unexpected ally in Tia Julia, who’s ready to make a change.

ESRD Transplant Quality Improvement Activity (QIA) LAN Calls

• 2020 Transplant QIA Orientation 
  This is a recording of the live presentation on the Transplant QIA. This presentation outlines the 2020 project goals, successful stories, and expectations for moving patients to the transplant lidney waiting list.
• Overview of the Kidney Allocation System Webinar 
  February 19, 2020, at 12:00 p.m. MT
  Register now!

Did you miss the last ESRD National Coordinating Center (NCC) Transplant QIA LAN call? The NCC calls offer the opportunity for one Continuing Education Credit. Access past recordings at https://esrdncc.org/en/qia/.

Understanding the Kidney Allocation System: Wednesday February 19, 2020

Arizona Mayo Clinic Transplant physicians, Dr. Khamash and Dr. Jadlowiec, share a wealth of information on the essentials to understanding the Kidney Allocation System. This presentation may be viewed at the click below:

• Play recording (56 minutes)

Past State-Specific Transplant Center Events

Arizona

Kidney Transplant Referral and Criteria Overview
Tuesday, February 11, 2020 |  Play Recording (1 hr., 11 min.)
This presentation addresses kidney referral and transplant criteria, multi-center listing, and individual transplant contact information. Presented by Banner University Medicine in Tucson, Banner University Medicine in Phoenix, Dignity Health St. Joseph’s Hospital and Medical Center, and Mayo Clinic Kidney Transplant. 

Colorado: Recording Unavailable.

Nevada

Kidney Transplant Referral and Criteria Overview
Tuesday, February 4, 2020 | Play Recording (59 min.)
This presentation addresses kidney referral and transplant criteria, multi-center listing, and individual transplant contact information. Presented by UMC Center for Transplantation.  

New Mexico

Kidney Transplant Referral and Criteria Overview
Wednesday, February 5, 2020 | Play Recording (57 min.)
This presentation addresses kidney referral and transplant criteria, multi-center listing, and individual transplant contact information. Presented by Presbyterian Hospital Transplant and University of New Mexico Hospital.  

Utah

Kidney Transplant Referral and Criteria Overview
Thursday, February 6, 2020 | Play Recording (52 min.)
This presentation addresses kidney referral and transplant criteria, multi-center listing, and individual transplant contact information. Presented by University of Utah Health and Intermountain Healthcare Transplant Services.