Assisting Your Patient Through the Transplant Process

Why Does a Patient Choose Transplant Avoid dialysis Improve quality of life Continuation of life goals Work Family Hobbies/interests/travel Fewer diet restrictions Live longer Doctor or staff tells them to do it They have a living donor Family pressures

Waiting List 5/3/10 All 107,223 Kidney84,672 Pancreas1,455 Kidney/Pancreas2,181 Liver15,954 Intestine244 Heart3,143 Lung1,841 Heart/Lung81

Waiting Times O >1771 days (approx. 5 years) A >1144 days B >2003 days (approx. 5 years) AB >732 days

Improving Transplant Outcome Begins Long Before the Transplant Assess the whole picture Individualized Plan Assessment of resources Plan to meet need Medical contraindications Psychosocial contraindications Financial Support Adherence to medical recommendations Mental Health/Psychiatric Issues Depression; Substance abuse

Psychological Issues Psychological or Psychiatric evaluation recommended Substance abuse, psychiatric history Will patient be able to adhere to medical recommendations for transplant Ongoing counseling indicated to adapt to transplant regimen Adherence assessment and plan

What the dialysis social worker can do and why Kidney Health Care Apply even if it’s only for travel AKF can no longer pay for Medicare supplement after transplant. Usually patient cannot pay and supplement ends. KHC will pay 20% for anti-rejection meds not covered by Medicare Part B if patient does not have Medicare supplement. If patient loses EGHP, KHC will cover 4 meds with EGHP termination notice. When transplant patients need meds, they need them quickly to avoid transplant rejection!

What the dialysis social worker can do and why Keep KHC record updated with current insurance, including Medicare supplement info. If this is not kept up to date, billing for anti-rejection meds can be billed incorrectly immediately following transplant. This can cause patient not to get anti-rejection medications.

What the dialysis social worker can do and why Choose the most cost effective Medicare supplement possible If there is any chance of patient paying this cost post transplant, it needs to be the lowest cost possible Educate yourself on changes to the supplement plans. Several will no longer cover full 20% co-insurance. Assess for Medicaid/QMB/SLMB/QI-1 Educate the patient re AKF and post transplant guidelines

Costs and Side Effects For your knowledge and background

Anti-rejection Medications (cost without insurance) Prograf Headache, nausea, diarrhea, high blood sugar, tremors, excessive hair growth, trouble sleeping, high blood pressure, swelling, high cholesterol/ triglycerides sleep problems, mood swings, abnormal liver function 5 mg twice a day $ per month Neoral Headache, tremors, abnormal kidney function, high blood pressure, high blood sugar, hyperlipidemia, excessive hair growth, gum over growth, sleep problems, mood swings, seizures 200 mg twice a day $ per month Cellcept / Myfortic Nausea, vomiting, diarrhea, stomach cramping, headache, low white blood cell count, low red blood cell count, low platelet count 1000 mg twice a day $ per month Prednisone Fluid retention, swelling of face, high cholesterol & triglycerides bone disease, stomach ulcers, acne, mood swings, anxiety, weight gain, increased blood sugar, cataracts, bruising 10 mg once a day $7.16 per month Rapamune/ Zortress High cholesterol, high triglycerides, high blood pressure, rash, acne, low platelets, diarrhea 2 mg once a day $ per month These meds remain covered under Medicare Part B for most people rather than Part D.

Side Effects of Medications  swelling of feet, hands, abdomen, or face  anxiety  mood swings  trouble sleeping  tremors (shaking)  nausea, diarrhea  headache  unwanted hair growth  increased appetite  changes in fat and sugar metabolism  weight gain  hair loss  high blood pressure  gum overgrowth  tingling hands and feet  vomiting  increased risk of infection  increased risk of cancer

Some Medical Costs that come with Transplant  the hospital stay and surgery (Medicare deductible, $1100)  additional hospital stays for complications (Medicare deductible, $1100 per 60 day admission)  follow-up care and testing  anti-rejection and other drugs, which can easily exceed $10K per year;  fees for surgeons, physicians, radiologist, and anesthesiologist  insurance deductibles, out of pocket expenses and co-payments (Medicare and/or Employer Group Health Plan)

Other Meds Commonly Prescribed at Discharge Should be covered under a patient’s Medicare Part D plan. Include these if you are helping a pre-transplant patient determine the best Part D plan. Valcyte (needs to be on Part D formulary) $2700/month (needed first 3 months after txp) Mycelex (clotrimazole)$200 (needed 6 weeks after txp) PPI (nexium, protonix (pantoprazole), aciphex, prevacid, kapidex, omeprazole) Stomach meds Blood pressure meds

Part D and other Creditable Coverage Issues of having both Part D and EGHP Denial of coverage COB Auto enrollment in Medicare Part D if enrolled in Medicaid even temporarily

Non Medical Costs Transportation (to and from transplant center; to and from follow up visits—about 13 1 st month) Food while staying near transplant center $15-$25 a day ($15 x 42= $630) Lodging (6 weeks) while staying near transplant center $40-60 a day ($40 x 42= $1680) Lost wages (8 weeks) Dependent careChildren should not come with patient for transplant!

Freedom? A transplant does not mean the end to seeing doctors, going to clinic, taking lots of pills, staying on a diet, etc.

What to Expect The first 3-4 months after transplant can be a difficult period for the patient and the family 50% of people go back into the hospital at least once during the first 6 months post op Rejection episodes can be anticipated Debt accrues due to loss of insurance, loss of wages, medical costs

What to Expect Problems with access to insurance Medicare terminates 36 months after transplant unless the patient has another disability or if over 65 After Medicare ends, options include EGHP High risk insurance pools VA Medicaid

Help the Patient Prepare Early for Return to Employment Social Security Review usually occurs within months after transplant. If patient was disabled solely on ESRD, they will no longer be considered disabled as early as 12 months following transplant. LTD will also end unless there is an ongoing disability. Help the patient to begin thinking of rehabilitation early

Help the patient remember.. To receive full Medicare benefits for a transplant, you must go to a Medicare approved facility If the person has their transplant in another country, Medicare Part B will not cover the anti-rejection medications The anti-rejection meds create huge problems with Part D donut hole Medicare Part D does not cover anti-rejection meds if person qualifies under Part B for coverage.

Medicare Issues Patients can choose to wait to sign up for Part A at the time of transplant They can wait to take Part B until they need it Must plan ahead to avoid a gap in coverage Coordination of benefits (COB) Applying for Medicare Part B if Part A is in place Can only apply during January-March Medicare Part B becomes effective July Can usually apply for Part B at time of transplant

What the Dialysis Social Worker Can Do and Why If Medicare Part B is terminated, notify transplant center, as anti-rejection medications WILL NOT be covered until it is reinstated.

Medicare Issues Medicare must be effective the month of the transplant for the anti-rejection meds to ever be covered by Medicare Part B If someone is on COBRA, this can have the implication of losing COBRA.

Desired Outcome of Transplant Psychosocial Assessment and Education Plan for Access to Medications Plan for Caregiver and Support Plan for Lodging Plan for Transportation Plan for Fundraising Plan for Employability Plan for Insurance after Transplant To promote improved transplant outcomes

Fundraising Patients and families often use public fundraising to help cover expenses not paid by medical insurance. It is a good idea to ask for assistance in planning, promoting, and carrying out these activities. The transplant social worker or coordinator will often need to help complete part of the application National Transplant Assistance Fund (800) ; National Foundation for Transplants (800) ; Children's Organ Transplant Association (800) ;

Resources Kidney School American Association of Kidney Patients 800/ Life Options Rehabilitation Resource Center 800/ National Kidney Foundation (800)/ ; Transaction Council United Network for Organ Sharing (888) ;

Mary Beth Callahan, ACSW/LCSW Dallas Transplant Institute 214/ , 6290