This Transplant Change Package was created by collecting best practices from highly effective outpatient dialysis facilities and transplant centers. It identifies proven roads to success (Primary Drivers) and actionable resources (Secondary Drivers) to support small changes or ideas to help dialysis facilities reach transplant referral and wait list goals. The Network encourages dialysis facilities to review the Change Package with the IDT during monthly Quality Assessment and Performance Improvement (QAPI) meetings to design a plan for the facility.
Network 17 Transplant Centers (America Samoa, Guam, Hawaii, Mariana Islands, and Northern California)
- University of California (UC) San Francisco Transplant Center: https://www.ucsfhealth.org/clinics/connie-frank-transplant-center-at-ucsf
- UC Davis Transplant Center: https://health.ucdavis.edu/transplant/
- California Pacific Medical Center (CPMC) Transplant Center: https://www.sutterhealth.org/cpmc
- Queens Transplant Center―Hawaii: https://www.queens.org/the-queens-medical-center/services/transplant-center/transplant-center-qmc
- Stanford Health Care Kidney Transplant Program: https://stanfordhealthcare.org/medical-clinics/kidney-transplant-program.html
Network 7 Florida Transplant Centers:
- Tampa General Hospital: https://www.tgh.org/services/transplant/kidney-transplant
- UF Health Shands: https://ufhealth.org/kidney-transplant
- Largo Medical Center―Transplant Institute of Florida: https://largomedical.com/specialties/kidney-transplant
- The Miami Transplant Institute: https://jacksonhealth.org/transplant/
- Mayo Clinic Kidney Transplant Program: https://www.mayoclinic.org/departments-centers/kidney-transplant/home/orc-20203197
- Halifax Health Center for Transplant Services: https://www.halifaxhealth.org/services-treatments/our-services/transplant
- Ascension Sacred Heart Kidney Transplant Program: https://healthcare.ascension.org/Locations/Florida/FLPEN/Pensacola-Ascension-Sacred-Heart-Kidney-Transplant-Program
- Cleveland Clinic Florida Kidney Transplant Program: https://my.clevelandclinic.org/florida/departments/transplant/depts/kidney
- Advent Health Orlando Transplant Institute: https://www.adventhealth.com/hospital/adventhealth-orlando/transplant-institute
- Memorial Healthcare System Transplant Institute: https://www.mhs.net/services/transplant
Transplant Medication Resources:
- American Society of Transplantation (AST) Medication Access and Drug Shortage Concerns During the COVID-19 Pandemic
- 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.
California Specific Resources
Patients can apply for Covered California or Medi-Cal by going to: https://c4yourself.com/c4yourself/index.jsp.
Patients can apply for MRMIP (Major Risk Medical Insurance Program) through the State of California by going to: https://www.dhcs.ca.gov/services/Pages/MajorRiskMedicalInsuranceProgram.aspx. AKF may be able to assist with the premium costs.
Florida-Specific Resources:
The NKF of Florida’s Hawthorne Patient Assistance Fund will provide short-term financial assistance to qualified kidney transplant recipients to meet the cost of their kidney transplant related medications (immunosuppressant and prophylaxis drugs), while they seek out other longer-term solutions.
Approved patient applicants are eligible to receive assistance of up to $1,000 per month, with a lifetime maximum of $3,000, paid directly to their pharmacy of choice.
Understanding Kidney Donor Profile Index (KDPI) Resources: Learn more about how accepting a high KDPI kidney can shorten your wait time for a transplant.
- Understanding KDPI Scores Handout
- Understanding KDPI Scores Poster
- Understanding KDPI Scores Handout in Spanish
- Understanding KDPI Scores Poster in Spanish
Partnering Along the Road to Transplant (English/Spanish): Use this handout to educate on ways to improve communication between patients and their providers and ease the transplant process for patients.
Ascent to Transplant videos for patients and healthcare providers:
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 link below:
- Play recording (56 mins.)
Considering a Transplant? Let's Get Started! (PDF)
This tri-fold brochure can easily fit into a pocket and can be used to track progress and keep details organized as a patient prepares for transplant evaluation.
More Resources
- 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).
- Kidney Talk With Family and Friends Over the Holidays: Caring Is Sharing: The holidays are a great time to share information about kidney disease and the option for transplant with family and friends who are gathering. Use this handout for talking points to help guide you in your conversations.
- 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 the Transplant 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
- 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."
- 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.
- A public service announcement (PSA) campaign that carries a strong call to action.
-
- 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 2:“Dreamy Dialysis Technician” (9:15)
-
- 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 3: “Do As I Say, Not As Tia Julia Does” (10:13)
-
- 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 4: “I'm Broken, So You Fix Me” (7:40)
-
- 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 5: “Dad, I Want To Give You My Kidney” (9:05)
-
- 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 6: “How Daisy Got Her Backbone Back” (8:04)
-
- 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 7: “Check!” (8:32)
-
- 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 8: “I'm Ready To Fix You” (7:29)
-
- 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.
- Episode 9: “Now I Need Therapy, And You're Coming With Me” (12:14)
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)
- Transplant Ready Review Checklist
Use this Transplant Ready Review Checklist with patients who are active on the transplant waiting list to make sure they are "transplant ready." Being ready and prepared to receive a transplant is so important, and this checklist will help assess if additional support or interventions are necessary.
- Network 7 2019/2020 Transplant Referral Guide
The Transplant Referral Guide is a tool to help guide dialysis patients, their family members and care partners to the transplant centers that could most likely meet their needs. It provides location and contact information, as well as easy-to-compare eligibility criteria for the 10 transplant centers in the Network 7 service area.
- Quality Assessment and Performance Improvement (QAPI) Quality Improvement Activity (QIA) Monitoring Form
Use the Quality Assessment and Performance Improvement (QAPI) Quality Improvement Activity (QIA) Monitoring Form for tracking education, referrals, work-ups, and waitlist status for transplant and for discussion of progress toward goals during QAPI meetings.
- PDSA Cycle Intervention
Use this Plan-Do-Study-Act (PDSA) tool to guide you in your transplant QIA rapid-cycle improvement process.
- Transplant Refusal Follow-up: Why Not Consider a Transplant
Use this one-page document to educate patients and understand the reason patients are refusing to be referred for transplant.
- 5 Step Transplant Tracker
Use the 5 Steps to Transplant Tracker (XLSX) for tracking patients through the 5 step waitlist process, documenting contacts with transplant centers, monitoring active/inactive status and identifying barriers.
- Tips for Engaging Patients and Hosting a Successful Transplant Lobby Day
This one-pager provides simple, easy-to-follow steps for hosting a successful Transplant Lobby Day.
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.
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