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 Kidney 84,672 Pancreas 1,455 Kidney/Pancreas 2,181 Liver 15,954 Intestine 244 Heart 3,143 Lung 1,841 Heart/Lung 81
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$888.89 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$737.84 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$572.36 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$416.00 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 1st 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 care Children 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 12-18 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) 642-8399; www.transplantfund.org National Foundation for Transplants
(800) 489-3863; www.transplants.org Children's Organ Transplant Association
(800) 366-2682; www.cota.org
Resources
Kidney Schoolwww.kidneyschool.org
American Association of Kidney Patients www.aakp.org; 800/749-2257
Life Options Rehabilitation Resource Center www.lifeoptions.org; 800/468-7777
National Kidney Foundation (800)/622-9010; www.kidney.org; Transaction Council
United Network for Organ Sharing (888) 894-6361; www.unos.org
Mary Beth Callahan, ACSW/LCSWDallas Transplant Institute
214/358-2300, [email protected]