Journey to Transplant: How Patients Facing Organ Failure Get on the Transplant Waiting List Christine Lee, RN, BSN, CCTC Leeanne Shinn, RN UCLA Kidney and Pancreas Transplant Program

“How To Be” Being in Action! The Answers Are In the Room “Report out” on Questions to Run-on: – Scribe – Spokesperson All Teach / All Learn

Question to Run on? What can you do to educate your patients or community on the Journey to Transplant?

Introductions Christine Lee Leeanne Shinn

Objectives Understand the referral, evaluation and listing process for organ transplant – kidney transplantation Provide overview of the national wait list and review various deceased donor options Discuss living donor transplant options

Treatment Options – Heart/Lung/Liver failure: Organ transplant Heart - LVAD as bridge to transplant – End stage renal disease (ESRD): Dialysis Kidney Transplant – Type 1 diabetes: Insulin therapy Pancreas alone (PA), kidney/pancreas transplant (SPK)

What is the goal of kidney transplant? Freedom from dialysis Better quality of life Prolongs life compared to dialysis To maximize survival

Fig. 1. Overall unadjusted actuarial survival probabilities for transplanted recipients and haemodialysis patients Mazzuchi, N. et al. Nephrol. Dial. Transplant : ; doi: /ndt/

Kidney Transplant Cons: – Not for everyone: compliance, health – Long wait time due to organ shortage – Require strict adherence to daily medications – Transplant medications for life

Referral Process For kidney transplant - Referral made by physician, dialysis social worker, insurance case manager or patient Find a local transplant program Necessary documents: – H&P, Social worker note, most recent lab, cardiac tests, imaging studies, ABO – Medicare Entitlement Form (2728 form) Schedule an appointment with the transplant team for evaluation

Selecting a Transplant Program The experience of the transplant team Insurance coverage Geographical proximity to the program – The travel time to the transplant center is important when patient is waiting for an organ and is a key factor considered in organ distribution. The quality and availability of pre- and post- transplant services. Availability of friends and family for assistance

Evaluation Process Patient Education Orientation Consultation with the transplant team – Transplant Physician – Surgeon – Transplant Nurse Coordinator – Social Worker – Dietician

Evaluation Process Other consultation as needed – Cardiology, Hepatology, Infectious Disease, Psychiatry, Hematology, Dermatology, Oncology, etc Pending tests – Lab: Blood type x2, HLA, PRA, serology – Cardiac tests: EKG, Stress test, Echocardiogram, Coronary angiogram – Radiology: CXR, renal/abdominal ultrasound, CT scan, MRI – Screening tests: PSA, pap smear, mammogram, colonoscopy

Patient Selection Criteria Must be accepted as a candidate before listing Selection Criteria – In general, all end-stage renal failure patients who, after having been informed of the risks of the transplant surgery and the inevitable chronic immunosuppressive therapy, still express a clear desire for this modality of treatment, will be accepted as candidates for evaluation. Exclusion criteria – Presence of disseminated or recent malignancy – Active infection – Severe coronary artery disease and/or peripheral vascular disease – Underlying disease states such as multiple myeloma, scleroderma, oxalosis, sickle-cell anemia – Serious psychosocial problems – Squamous cell skin cancer – Renal cell carcinomas – BMI > 35 – Partial insurance coverage – Patients that are wheelchair bound, require oxygen, or are severely disabled – Patients who are unwilling to accept blood transfusions under any circumstances while taking anticoagulations

Patient Selection Criteria After completion of the workup, Selection Committee will review the case The Committee is made up of Transplant Nephrologists, Surgeons, Nurse Coordinators, Social workers, dietician, pharmacist and other consultants Once decision is made, the patient and physician will be notified in writing

Listing Process Medical clearance by the Selection Committee Financial clearance Eligibility for wait time accrual – On maintenance dialysis – GFR 20 or less Notification within 10 days to the patient, physician and dialysis social worker

UNOS Wait List National Wait List - United Network for Organ Sharing (UNOS) 107,337 patients are waiting for all organs 84,000+ patients are waiting for kidney transplant

U.S. Waiting List Candidates by Organs Based on current OPTN data as reported on May 7, Data subject to change based on future data submission or correction.

UNOS Wait List About 16,000 transplants per year – 6,000 living donor transplant (doubled over 15 yrs) – 10,000 deceased donor California Wait List – 16,250+ patients are waiting for kidney – Average wait time: 7 to 10 years

Allocation Strategies Allocation Strategies Dialysis Wait Time: – wait time starts as initial dialysis start date Dual organ transplant – kidney/pancreas – Liver/Kidney – Heart/Kidney Multiple listing

Is there a way to reduce the waiting time? Expanded Criteria Donor (ECD) kidney – A kidney from a donor age over 60 years or over age 50 with a history of HTN, cause of death due to CVA, or a terminal creatinine greater than 1.5 mg/d Hepatitis C list – Only for the patients with hepatitis C Donation after cardiac death (DCD) – A kidney from a donor who was declared dead based on a lack of a heartbeat. – These kidneys are less likely to function immediately & may have a greater risk of rejection The Centers for Disease Control (CDC) increased risk – Higher risk for the transmission of viral disease including HIV & Hepatitis Donation Point Living Donor Transplant

Living Donor Transplant Options Compatible Recipient-Donor pairs Desensitization Protocols Blood Type incompatible Kidney Exchange Program – AKA Paired Exchange or Chain Transplant

Living Donation Related vs. Unrelated Requirements – Age 18 ~ 65 – Health Concerns (diabetes, high blood pressure, cancer, hepatitis, weight issue) – Lifestyle: substance abuse

Blood type compatibility chart Candidate’s Blood Type O A B AB Donor’s Blood Type O A or O B or O A, B, AB or O

Compatible Recip-Donor Pairs Blood types are compatible Cross match testing indicates low risk of early rejection Donor can donate directly to recipient

But… What if the donor and the recipient are not compatible?

At least one third of patients with a willing living donor are excluded due to incompatible blood type and positive cross match 35% of any two people will be blood type incompatible 30 % of patients needing a kidney transplant will be sensitized because of previous transplants, pregnancies or transfusions

Desensitization Advantages include increasing the donor pool and the friend or love one can donate to the intended recipient Disadvantages include cost which averages approximately $30,000 Decreased patient survival (5yr 87% vs. 94%) AJT 2004 Unpredictable rates of accelerated rejection Decreased graft survival (1yr. 84% vs. 96% ) AJT 2004 Decreased 5 yr. graft survival (69% vs. 81%) AJT 2009

Blood Type Incompatible Living donor has different blood type No other donor available Requires analysis of antibody levels Insurance authorization for treatment Pre-operative treatment protocol over several weeks to achieve safe window for transplantation with your living donor

ABOi Molecules present or absent on blood cells determine blood type When blood types are mixed, these molecules act as antigens that trigger ABO incompatibility reaction Preconditioning is done to cleanse the blood of these circulating antibodies and depends on blood type and amount of antibodies present

ABOi Therapies Plasmapheresis- remove antibodies Immunoglobulin-decrease antibodies which are destructive to the graft Splenectomy Anti-CD20 Antibody (rituximab)- depletes CD20 protein which is found on the wall of most B cells

Paired Donation Initially slow to take off because 1984 NOTA “unlawful to acquire organ in exchange for valuable consideration” 2007 Senate bill “valuable consideration does not apply to paired donation”

Donor Exchange Recipient/donor pair have incompatible blood types Other donor/recipient pair have incompatible blood types Donors evaluated/accepted for donation Donor/recipient pairs “exchange” donor kidneys Exchange is anonymous until after surgery

Paired donor exchange Pair #1 Recip blood type = A Donor blood type = B B to A is not compatible Pair #2 Recip blood type = B Donor blood type = A A to B is not compatible

Paired Donor Exchange Pair #1 Pair #2 Recipient = A Recipient = B Donor = B Donor = A Blood-type incompatible Recip/Donor pairs exchange blood-type compatible kidneys

Down Side of Paired Donation If one living donor backs out then the other pair is disadvantaged Requires simultaneous O.R. start

Donor Exchange “Chains” Participation of multiple pairs of donors and recipients Usually started by a non-directed or “altruistic” One donor is “left over” to begin a new section of the chain

Donor Chains Living donor can donate local to where they live Kidneys are shipped using established OPO protocols on commercial flights Do not need simultaneous O.R. start times

Donor Chains Very time intensive, high work load for low yield Only about 120 done to date Potential for 1,000 -2,000 additional kidney transplants per year If there is a delay in donation, donor may back out

In short, there are new options “Standard” living donor transplant Highly-sensitized Blood-type incompatible Paired or triple exchange Donor exchange “chains”

Conclusion Timely referral to transplant center Communication and collaboration between the referring physician, patient, dialysis unit and the transplant team are the key Advances in living donation are providing patients with more opportunities for transplant

Question to Run on? What can you do to educate your patients or community on the Journey to Transplant? 3 minutes to work at your tables and report back, Go!

Transition to Breakout Session #2 Next Breakout Session starts at 11:30 Please see your agenda for specific room locations Enjoy the Learning!

Journey to Transplant: How Patients Facing Organ Failure Get on the Transplant Waiting List Christine Lee, RN, BSN, CCTC Leeanne Shinn, RN UCLA Kidney and Pancreas Transplant Program

“How To Be” Being in Action! The Answers Are In the Room “Report out” on Questions to Run-on: – Scribe – Spokesperson All Teach / All Learn

Question to Run on? What can you do to educate your patients or community on the Journey to Transplant?

Introductions Christine Lee Leeanne Shinn

Objectives Understand the referral, evaluation and listing process for organ transplant – kidney transplantation Provide overview of the national wait list and review various deceased donor options Discuss living donor transplant options

Treatment Options – Heart/Lung/Liver failure: Organ transplant Heart - LVAD as bridge to transplant – End stage renal disease (ESRD): Dialysis Kidney Transplant – Type 1 diabetes: Insulin therapy Pancreas alone (PA), kidney/pancreas transplant (SPK)

What is the goal of kidney transplant? Freedom from dialysis Better quality of life Prolongs life compared to dialysis To maximize survival

Fig. 1. Overall unadjusted actuarial survival probabilities for transplanted recipients and haemodialysis patients Mazzuchi, N. et al. Nephrol. Dial. Transplant : ; doi: /ndt/

Kidney Transplant Cons: – Not for everyone: compliance, health – Long wait time due to organ shortage – Require strict adherence to daily medications – Transplant medications for life

Referral Process For kidney transplant - Referral made by physician, dialysis social worker, insurance case manager or patient Find a local transplant program Necessary documents: – H&P, Social worker note, most recent lab, cardiac tests, imaging studies, ABO – Medicare Entitlement Form (2728 form) Schedule an appointment with the transplant team for evaluation

Selecting a Transplant Program The experience of the transplant team Insurance coverage Geographical proximity to the program – The travel time to the transplant center is important when patient is waiting for an organ and is a key factor considered in organ distribution. The quality and availability of pre- and post- transplant services. Availability of friends and family for assistance

Evaluation Process Patient Education Orientation Consultation with the transplant team – Transplant Physician – Surgeon – Transplant Nurse Coordinator – Social Worker – Dietician

Evaluation Process Other consultation as needed – Cardiology, Hepatology, Infectious Disease, Psychiatry, Hematology, Dermatology, Oncology, etc Pending tests – Lab: Blood type x2, HLA, PRA, serology – Cardiac tests: EKG, Stress test, Echocardiogram, Coronary angiogram – Radiology: CXR, renal/abdominal ultrasound, CT scan, MRI – Screening tests: PSA, pap smear, mammogram, colonoscopy

Patient Selection Criteria Must be accepted as a candidate before listing Selection Criteria – In general, all end-stage renal failure patients who, after having been informed of the risks of the transplant surgery and the inevitable chronic immunosuppressive therapy, still express a clear desire for this modality of treatment, will be accepted as candidates for evaluation. Exclusion criteria – Presence of disseminated or recent malignancy – Active infection – Severe coronary artery disease and/or peripheral vascular disease – Underlying disease states such as multiple myeloma, scleroderma, oxalosis, sickle-cell anemia – Serious psychosocial problems – Squamous cell skin cancer – Renal cell carcinomas – BMI > 35 – Partial insurance coverage – Patients that are wheelchair bound, require oxygen, or are severely disabled – Patients who are unwilling to accept blood transfusions under any circumstances while taking anticoagulations

Patient Selection Criteria After completion of the workup, Selection Committee will review the case The Committee is made up of Transplant Nephrologists, Surgeons, Nurse Coordinators, Social workers, dietician, pharmacist and other consultants Once decision is made, the patient and physician will be notified in writing

Listing Process Medical clearance by the Selection Committee Financial clearance Eligibility for wait time accrual – On maintenance dialysis – GFR 20 or less Notification within 10 days to the patient, physician and dialysis social worker

UNOS Wait List National Wait List - United Network for Organ Sharing (UNOS) 107,337 patients are waiting for all organs 84,000+ patients are waiting for kidney transplant

U.S. Waiting List Candidates by Organs Based on current OPTN data as reported on May 7, Data subject to change based on future data submission or correction.

UNOS Wait List About 16,000 transplants per year – 6,000 living donor transplant (doubled over 15 yrs) – 10,000 deceased donor California Wait List – 16,250+ patients are waiting for kidney – Average wait time: 7 to 10 years

Allocation Strategies Allocation Strategies Dialysis Wait Time: – wait time starts as initial dialysis start date Dual organ transplant – kidney/pancreas – Liver/Kidney – Heart/Kidney Multiple listing

Is there a way to reduce the waiting time? Expanded Criteria Donor (ECD) kidney – A kidney from a donor age over 60 years or over age 50 with a history of HTN, cause of death due to CVA, or a terminal creatinine greater than 1.5 mg/d Hepatitis C list – Only for the patients with hepatitis C Donation after cardiac death (DCD) – A kidney from a donor who was declared dead based on a lack of a heartbeat. – These kidneys are less likely to function immediately & may have a greater risk of rejection The Centers for Disease Control (CDC) increased risk – Higher risk for the transmission of viral disease including HIV & Hepatitis Donation Point Living Donor Transplant

Living Donor Transplant Options Compatible Recipient-Donor pairs Desensitization Protocols Blood Type incompatible Kidney Exchange Program – AKA Paired Exchange or Chain Transplant

Living Donation Related vs. Unrelated Requirements – Age 18 ~ 65 – Health Concerns (diabetes, high blood pressure, cancer, hepatitis, weight issue) – Lifestyle: substance abuse

Blood type compatibility chart Candidate’s Blood Type O A B AB Donor’s Blood Type O A or O B or O A, B, AB or O

Compatible Recip-Donor Pairs Blood types are compatible Cross match testing indicates low risk of early rejection Donor can donate directly to recipient

But… What if the donor and the recipient are not compatible?

At least one third of patients with a willing living donor are excluded due to incompatible blood type and positive cross match 35% of any two people will be blood type incompatible 30 % of patients needing a kidney transplant will be sensitized because of previous transplants, pregnancies or transfusions

Desensitization Advantages include increasing the donor pool and the friend or love one can donate to the intended recipient Disadvantages include cost which averages approximately $30,000 Decreased patient survival (5yr 87% vs. 94%) AJT 2004 Unpredictable rates of accelerated rejection Decreased graft survival (1yr. 84% vs. 96% ) AJT 2004 Decreased 5 yr. graft survival (69% vs. 81%) AJT 2009

Blood Type Incompatible Living donor has different blood type No other donor available Requires analysis of antibody levels Insurance authorization for treatment Pre-operative treatment protocol over several weeks to achieve safe window for transplantation with your living donor

ABOi Molecules present or absent on blood cells determine blood type When blood types are mixed, these molecules act as antigens that trigger ABO incompatibility reaction Preconditioning is done to cleanse the blood of these circulating antibodies and depends on blood type and amount of antibodies present

ABOi Therapies Plasmapheresis- remove antibodies Immunoglobulin-decrease antibodies which are destructive to the graft Splenectomy Anti-CD20 Antibody (rituximab)- depletes CD20 protein which is found on the wall of most B cells

Paired Donation Initially slow to take off because 1984 NOTA “unlawful to acquire organ in exchange for valuable consideration” 2007 Senate bill “valuable consideration does not apply to paired donation”

Donor Exchange Recipient/donor pair have incompatible blood types Other donor/recipient pair have incompatible blood types Donors evaluated/accepted for donation Donor/recipient pairs “exchange” donor kidneys Exchange is anonymous until after surgery

Paired donor exchange Pair #1 Recip blood type = A Donor blood type = B B to A is not compatible Pair #2 Recip blood type = B Donor blood type = A A to B is not compatible

Paired Donor Exchange Pair #1 Pair #2 Recipient = A Recipient = B Donor = B Donor = A Blood-type incompatible Recip/Donor pairs exchange blood-type compatible kidneys

Down Side of Paired Donation If one living donor backs out then the other pair is disadvantaged Requires simultaneous O.R. start

Donor Exchange “Chains” Participation of multiple pairs of donors and recipients Usually started by a non-directed or “altruistic” One donor is “left over” to begin a new section of the chain

Donor Chains Living donor can donate local to where they live Kidneys are shipped using established OPO protocols on commercial flights Do not need simultaneous O.R. start times

Donor Chains Very time intensive, high work load for low yield Only about 120 done to date Potential for 1,000 -2,000 additional kidney transplants per year If there is a delay in donation, donor may back out

In short, there are new options “Standard” living donor transplant Highly-sensitized Blood-type incompatible Paired or triple exchange Donor exchange “chains”

Conclusion Timely referral to transplant center Communication and collaboration between the referring physician, patient, dialysis unit and the transplant team are the key Advances in living donation are providing patients with more opportunities for transplant

Question to Run on? What can you do to educate your patients or community on the Journey to Transplant? 3 minutes to work at your tables and report back, Go!

Transition to Lunch Lunch is from 12:30 – 1:30 In the Crystal Ballroom, on the main level of the hotel Open seating Bon Appétit!