Assisting Your Patient Through the Transplant Process

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Assisting Your Patient Through the Transplant
Process
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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

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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

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Waiting Times

• O gt1771 days (approx. 5 years)
• A gt1144 days
• B gt2003 days (approx. 5 years)
• AB gt732 days

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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

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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

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What the dialysis social worker can do and why

• Kidney Health Care
• Apply even if its 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!

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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.

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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

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Costs and Side Effects

• For your knowledge and background

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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.
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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

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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)

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Other Meds Commonly Prescribed at Discharge
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
Should be covered under a patients Medicare Part
D plan. Include these if you are helping a
pre-transplant patient determine the best Part D
plan.
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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

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Non Medical Costs
Transportation (to and from transplant center to and from follow up visitsabout 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!
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Freedom?

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

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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

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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

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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

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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.

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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

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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.

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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.

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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

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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
• [phone] www.transplantfund.org
• National Foundation for Transplants (800)
  489-3863 www.transplants.org
• Children's Organ Transplant Association
• [phone] www.cota.org

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Resources

• Kidney School
• www.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
• [phone] www.unos.org

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• Mary Beth Callahan, ACSW/LCSW
• Dallas Transplant Institute
• 214/358-2300, 6290
• callahanm_at_dneph.com