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Adhering to Treatment

Following Your Treatment Plan

You will need to take several medications after your transplant surgery. Taking all medications as prescribed is your best chance for a healthy, long-lasting transplanted organ. Not taking your medications may lead to future health problems. Factors that may reduce the life of your transplanted organ include:
  • Missing doses
  • Changing the dose without your transplant team’s okay
  • Stopping medications on your own
  • Taking other medications not prescribed by your transplant team
  • Missing medical or laboratory appointments
  • Not following a proper diet
  • Lack of exercise
  • Abusing alcohol or drugs
  • Smoking

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Side Effects

Occasional side effects may occur with some of the medications you are taking, including those that prevent rejection. Be sure to report and discuss any side effects that you notice with your transplant team. Do not stop taking your medications even if you experience side effects. Your transplant team can work with you to help reduce some of these side effects.

You may have considered taking over-the-counter self-medications or herbal products to lessen some side effects. However, you should consult with your transplant team before taking other ANY new medications or herbal products.

Your Medications: "Take as Directed"

Your transplant team has carefully tailored your medications to YOU. Taking each medication as directed is one of the best ways to keep your transplanted organ healthy and functioning. Here are some other useful tips:
  • Always take your medications at the same time
  • Do not change the amount of medication you take unless the transplant team has given their okay
  • Always swallow pills and capsules whole unless the transplant team has told you otherwise
  • Tell your transplant team if you experience side effects. Do not stop taking your medications without their approval
  • Do not take any over-the-counter medications without first asking your transplant team
  • Avoid grapefruit and grapefruit juice because they can alter the effectiveness of some medications
  • If you cannot remember how to take your medications, call your transplant team!

Remembering to Take Your Medications

Getting organized is the first step to making sure you take your medications correctly. Listed below are some tips to help you remember to take your medications:
  • Take your medications at the same time each day
  • Schedule pill-taking time with another daily activity (for example, before brushing teeth or eating meals)
  • Use an alarm clock to remind you that it is time to take your medications
  • Put your medications in an accessible location
  • Make a schedule of all of your medications using the schedule organizer in the Table

Figure. Schedule organizer for anti-rejection medications

Figure. Schedule organizer for anti-rejection medications
Here are some other tips to help organize your medications:
  • Create a chart of all your medications, when they should be taken, and how they should be taken – carry the chart with you wherever you go
  • Take time each week to sort out your medications for the next week
  • Pay close attention to what your pills look like
  • Take an inventory of your pills at least once a week — do it on the same day each week so you can get into a routine
  • Keep track of how many pills you have left and be sure to leave enough time to order your refills
  • Mark your calendar so that you remember to refill your prescriptions before they run out
More helpful tips:
  • Keep a list of medications with you at all times and wear a bracelet or necklace that alerts others that you are a transplant recipient
  • When traveling, keep your medications with you in a carry-on bag or in your handbag
  • In case your return is delayed, take extra doses of medications when you travel. If you are delayed for an extended period, contact your local pharmacist for options. If you are unable to get a hold of your medications, contact your transplant team
  • When traveling overseas or passing through customs, take a letter from your transplant team that lists your medications

Keeping Your Appointment

The best way to maintain a healthy organ is to keep all of your medical appointments. You will need to have lab tests done regularly just after transplantation and then less often as time goes by. You may be feeling fine, but these tests allow for potential medical problems to be detected and treated early, before they get worse.

Financial Issues: Cost Of The Transplant Procedure And Medication

The financial costs associated with organ transplantation can be challenging. For example, the average billed charges for a kidney transplant — 1 month before to 6 months after the transplant — approached $250,000 in 2008. The billed charges for other organ transplants can be higher. Then there are the ongoing costs of anti-rejection drugs, laboratory tests, and office visits (including travel and accommodation). The indirect costs, such as loss of income, can also be quite large.

Common funding sources to help with the costs of transplants include:

  • Private insurance
  • Medicare and Medicaid
  • Prescription drugs assistance programs
  • Veterans Administration

Private Insurance Coverage

Many people — or family members — may be covered by an employer-based or personal insurance policy. However, the benefits provided by these insurance policies can vary widely. Therefore, you should read your policy carefully and ask questions about how much will by covered, including lab tests, medications and follow-up care after you leave the hospital.

Many transplant centers have social workers and financial coordinators that can help guide you through complicated insurance questions. They can check with your insurance company and explain your coverage in more detail.

Insurance "Caps"

Insurance policies often have a lifetime "cap" in benefits and/or a "cap" on certain procedures or treatment, such as a transplant or the total amount of drugs per year. It is important to know about these "caps" and keep track of how your insurance dollars are paid out.

Gaps In Coverage

One of the issues you should explore is any vulnerability caused by "transitions" in insurance. For example, potential gaps/barriers in coverage if you transition to new hospital/new group of physicians, and the possible gap in coverage from pediatric to adult clinic (unless Medicare eligible).

Any change that could affect your medical insurance could result in a gap in coverage. You should seek the help of your transplant team in determining what options are available to you that will ensure your ongoing care.

Living Donation Costs

Most living donor-related medical costs are covered by insurance, but some associated expenses may not be reimbursable.

The recipient's insurance covers costs associated with medical evaluation of a potential living donor. In certain circumstances, the Transplant Centers Organ Acquisition Fund (OAF) may also cover some of these expenses. In either case, no costs for medical evaluation should be incurred by the potential donor.

The recipient's insurance covers the actual donation surgery expense.

Non-medical expenses for the donor are generally not covered including annual physicals, travel, lodging, and lost wages. However, the recipient may pay for these expenses. In addition, the National Living Donor Assistance Program provides financial assistance to those who want to donate an organ.

Medicare

Medicare is a federally funded health insurance program available to people who are 65 years or older, disabled or have end stage renal disease (ESRD). Medicare often does not pay all of your medical expenses. You are responsible for paying deductibles and co-pays. Consequently, many people purchase a private insurance policy, called a supplemental or "Medigap" policy, to defray some costs not covered by Medicare.

Medicare Part A

Medicare Part A pays for medical care in hospitals as an inpatient, nursing facilities, hospice care, and some home health care. It offers coverage for kidney transplants in a Medicare-approved facility and coverage for certain heart, lung, liver and heart/lung transplants (if you already have Medicare due to age, disability, or kidney failure) in Medicare approved facilities. Most people get Medicare Part A automatically when they reach the age of 65 years and do not have to pay the premium for it because they or a spouse paid Medicare taxes while they were working.

Medicare Part B

Patients who are eligible for Medicare may make monthly payments for Medicare Part B, which covers doctors' services, outpatient hospital care and some other medical services, such as the services of physical and occupational therapists, and some home health care. Part B helps pay for these covered services and supplies when they are medically necessary. If a patient is qualified for anti-rejection therapy coverage, Medicare Part B pays for 80% of immunosuppressive therapy and the patient is responsible for the other 20%. To qualify for immunosuppressive therapy coverage under Medicare Part B, a patient must:
  • Be entitled to Medicare because of age, disability, or end-stage renal disease
  • Have received an organ transplant that was covered by Medicare at the time of the transplant surgery (for example, kidney, heart, liver, lung, or pancreas)
  • Have received surgery at a Medicare-approved transplant facility
  • Have a working transplant organ that requires you to take anti-rejection drugs

Medicare Part D

Medicare recipients can enroll in a Medicare prescription drug plan (Part D). If you join a plan, Medicare Part D can help pay for prescribed drugs not covered by Part A or Part B. Anti-rejection drugs may be covered under Part D if you didn’t have Medicare Part A when you got your transplant or if you didn’t have your transplant in a Medicare-approved transplant program.

Patients pay a monthly premium for Medicare Part D coverage. Most patients will also pay a $250 annual deductible and 25% of the next $2,000 in drug costs. After a total of $2,250 in drug costs, patients pay 100% of the next $2,850 in medication expenses (the "doughnut hole") and then pay only 5% of the remaining annual costs.

Benefit stages Medication costs You pay… Up to a maximum of… Your total costs (including the yearly premium cost of $445)
Annual deductible $0 to $250 100% $250 $445 + $250 = $695
Initial coverage $250.01 to $2,250 25% $500 $695 + $500 = $1,195
Coverage gap $2,250.01 to $5,100 100% $2,850 $1,195 + $2,850 = $4,045
Catastrophic coverage Over $5,100 5% 5% $4,045 + 5% of the costs over $5100

You should carefully select Medicare Part D plans. Be sure to look at your list of medications and check if they are covered by a plan before you select one. You can get more information about Medicare Part D at the Centers for Medicare and Medicaid Services or by calling the Medicare Hotline (1-800-Medicare).

Medicaid

Medicaid is available only to certain low-income individuals and families with low incomes and resources. It is funded and administered through a state-federal partnership. Individual states set eligibility criteria and determine benefits and covered services (not all states cover transplants). Depending on your state's rules, you may have to pay a small part of the cost (co-payment) for some medical services.

For more information, contact your local social security office, transplant team or the Medicare Hotline (1-800-Medicare).

Prescription Drug Assistance Programs

Many pharmaceutical companies have programs to help patients who do not have insurance. Some programs provide free or discounted prescription medicines to patients meeting specific financial requirements. Information about these patient assistance programs can be obtained directly from the pharmaceutical companies, pharmacists, social workers, transplant team, and several web sites (http://www.needymed.com and http://www.rxassist.org and http://www.ashp.org/pap)

You can call individual drug companies to find out more about patient assistance programs for specific medications:

Abbott Patient Assistance Program (Gengraf)
(800) 633-9110

Astellas Patient Assistance Program for Organ Transplant (Prograf)
(800) 477-6472

Novartis Patient Assistance Program (Cyclosporine)
(888) 455-6655

Novartis Transplant Reimbursement Information (Neoral)
(877) 952-1000

Roche Patient Assistance Program (Cellcept)
(800) 772-5790

Wyeth Patient Assistance Program (Rapamune)
(877) 472-7268

Veterans Administration

Some people may be eligible for VA benefits. You may be also eligible to receive a transplant at a VA Medical Center if you first became ill while in the service or are indigent. For more information, contact your local Veterans Hospital or VA office.

References
Milliman Research report. 2008 US Organ and Tissue Transplant Cost Estimates. April 2008.