2018

A1E

Gwenn Verbakel

[EUROTRANSPLANT]
Eurotransplant is responsible for the allocation of donor organs in Austria, Belgium, Croatia, Germany,
Hungary, Luxembourg, the Netherlands and Slovenia. This international collaborative framework
includes all transplant hospitals, tissue-typing laboratories and hospitals where organ donations take
place.

1
Content
 History 3
 Getting an organ transplant 5
 The deceased donation process 10
 Thr living donation process 13

2
 History

A new approach

Until the mid-sixties transplant surgeons matched kidney donor and patient mainly by blood type.
Patients had to wait until a suitable donor was found in the center where they were treated.

In Leiden, Prof. Dr. Jon J. van Rood (1926-2017) obtained evidence that the HLA (Human Leucocyte
Antigen) system plays an import role in the outcome of renal transplantation. Matching of the HLA-
type of donor and recipients led to superior graft and patient survival. However, the number of HLA
antigens was large, which made the probability of finding a donor with a matching tissue type for a
particular patient low. This probability will increase if a donor is offered to a central database of many
patients in need for a transplant.

For this reason, Van Rood founded Eurotransplant in 1967. Twelve transplant centers in three countries
participated voluntarily by providing the information of their transplant candidates to Eurotransplant.
Every donor of these centers was reported to Eurotransplant in order to select from the waiting list the
patient with the best possible match. This patient oriented allocation of organs led to an enormous
improvement of the kidney graft survival.

Rapid growth

What started as a scientific experiment soon became a foundation, in which many transplant centers in
several European countries participated. A period of rapid growth followed. At the end of 1970
Eurotransplant was active for 68 centers in six countries: Austria, Belgium, Luxembourg, West-
Germany, the Netherlands and Switzerland. Eventually Switzerland withdrew from Eurotransplant, but
in 1991 East-Germany joined in, followed in 1999 by Slovenia, in 2007 by Croatia and in 2013 by
Hungary.

Several former Eastern European countries are currently interested in cooperating with Eurotransplant.
This would help them bring the quality of transplantation medicine to a higher level.

During the seventies Eurotransplant started allocating donor livers. A few years later Eurotransplant
expanded its services with the allocation of hearts and pancreas. In 1988 the allocation of lungs
started and since 1999 intestines are exchanged, although at a small scale.

Constant improvement

Since its foundation, Eurotransplant has allocated donor organs for 185 thousand transplants. From
the start till the present, Eurotransplant works on a constant improvement of its allocation. In 1996 the
Eurotransplant Kidney Allocation System (ETKAS) was introduced. This sophisticated system supports a
patient oriented allocation of kidneys, balancing medical and ethical principles. The same year the
Acceptable Mismatch program started fulfilling its purpose: finding a suitable organ for highly
immunized patients.

The Eurotransplant Senior Program, also known as the ‘old for old’-program, started in 1999. Organs
of donors of 65 years or older are allocated to recipients of the same age group, without taking into
account the tissue characteristics.

3
Democratization

Starting in 1994, the organization of Eurotransplant underwent a process of democratization. In 1996

an Assemby was installed, thus giving the transplant centers a say in managing Eurotransplant. From
then on the members of the Advisory Committees were selected by the national transplant societies.
After almost thirty years Prof. Dr. Jon van Rood resigned and was succeeded by Prof. Dr. Yves
Vanrenterghem as President, until he retired in 2005 and Prof. Dr. Bruno Meiser was elected.

The most recent step in de process of democratization was the formation of the Eurotransplant Council
in 2009. The Council strengthens the bonds within Eurotransplant by offering a permanent platform
for the exchange of information between the national authorities of the member states and the
Eurotransplant Board.

4
 Getting an organ transplant

Getting on the organ transplant waiting list

1. Get a Referral
You must get a referral from your physician in order to be evaluated by a transplant
program as a potential transplant candidate.
2. Gather Information
There's a lot to learn about the transplantation process, everything from where a
patient can be listed, to financial considerations, to recovery. This free brochure,
"What Every Patient Needs to Know ," from UNOS provides an overview of the
process.
3. Select a Transplant Center
While you may be referred to a transplant center or program, you may also want to
make sure that it meets your needs. Consider its location, compatibility with your
insurance program, financial arrangements and support group availability. The OPTN
has a list of member transplant centers.
4. Schedule an Evaluation Appointment
Contact the transplant hospital. Schedule an appointment for an evaluation to find
out if you are a good candidate for transplant. During the evaluation, ask questions
to learn as much as you can about that hospital and its transplant team.
5. Get Listed
If the transplant team members determine that you are a suitable transplant
candidate, they will add you to the OPTN national waiting list of all people waiting for
a transplant. The transplant team will contact you in writing about 10 days after you
are listed to let you know the date and time that your name was added to the
national list. Any questions you have about your status on the waiting list should be
directed to your transplant team at your transplant center.

Planning your finances

Understand the Costs Involved in Transplantation

Transplantation involves costs before, during, and after the actual transplant surgery. These costs are
the responsibility of the recipient, not the donor. Costs include:

 Laboratory tests, organ procurement, transplant surgeons and other operating room
personnel

 In-hospital stays, transportation to and from the transplant hospital for surgery and for
checkups

 Rehabilitation, including physical or occupational therapy

 Medications, including immunosuppressive or anti-rejection drugs which are very costly

For a list of important questions to ask your insurance company, visit transplantliving.org.

5
Putting Your Financial Plan Together

Planning for transplant surgery requires financial planning. Health insurance may cover some or most
of the costs, but insurance policies vary widely. Call your insurance company or your employer's
benefits office to get detailed information about how your insurance company handles the costs
related to your specific situation. For a list of important questions to ask your insurance company,
visit transplantliving.org.

In general, you are responsible for any costs not covered by insurance. You need to think about what
resources you will use to pay the costs not covered by insurance. These resources may include
savings, sale of property, or other sources.

Fortunately, you do not need to face these decisions alone. Members of the transplant team, such as
the transplant center's social worker and financial coordinator (see below), can help you develop a
financial plan and may be able to put you in touch with organizations that provide financial
assistance to transplant recipients.

Work with Your Financial Coordinator

The financial coordinator at a transplant center is a member of the transplant team. Financial
coordinators have detailed information and experience with health care financing and hospital
billing. It is helpful to speak with the financial coordinator before making financial decisions related
to your transplant and to keep the coordinator up to date as your financial plans evolve.

The financial coordinator can help you:

 Understand how your insurance company's benefits apply to transplant surgery

 Make a financial plan for paying for your transplant

 Make a financial plan for nonmedical (for example, living expenses) costs

 Locate additional sources of funding, if necessary

 Understand (and, if necessary, correct) bills from hospitals, doctors, pharmacies, and other
providers

Important questions to ask your financial coordinator are on pages 37–38 of What Every Patient
Needs to Know (PDF - 3.64 MB) and at transplantliving.org.

More detailed information on finding financial resources for a transplant may be found at:

 The financing and funding page of transplantliving.org.

 What Every Patient Needs to Know (PDF - 3.64 MB)

6
Find Out if Medicare or Medicaid Might Help You

Medicare is a federal program, and Medicaid is operated by individual states. Both are health
insurance programs that can help eligible people pay for the costs of transplantation.

Medicare is available for people age 65 or older, people who have certain disabilities, or people who
have end-stage renal disease (ESRD). The Medicare Part A insurance plan is available free to those
who qualify and covers inpatient hospital care and some nursing home care. People who wish to
participate in the Medicare Part B insurance plan pay premiums; Part B covers outpatient care,
doctor bills, some home health care, and prescription medicines including, in some cases,
immunosuppressive (antirejection) drugs.

Medicare certifies transplant programs throughout the country, and you must use a Medicare-
approved transplant facility in order to receive full Medicare benefits. To find out more about
Medicare-approved transplant centers or Medicare benefits for transplantation, visit the Medicare
website or contact your local Social Security office.

Medicaid is an insurance program for low-income persons and is funded jointly by the federal
government and the states. States determine who is eligible and what benefits and services are
covered.

Some states' Medicaid plans cover only transplant procedures performed within the state (unless
there is no transplant center for that organ in the state). Some states' Medicaid programs do not
cover transplantation.

For more information on Medicaid, contact your financial coordinator, local Social Security office, the
Social Security information line at 800.772.1213 or the financial coordinator at your transplant
center.

How organs are matched

The Organ Procurement and Transplantation Network (OPTN) has policies that regulate how donor
organs are matched and allocated to patients on the waiting list. There are some common factors in
how organs are matched, such as blood type and how severe the patient's illness is. However,
depending on the organ, some factors become more important than others, so there is a different
policy for each organ.

After your transplant

Be a Partner in Your Follow-up Care:

Even years after surgery, doctors will continue to monitor the health status of both your transplanted
organ and your whole body. Laboratory tests are a regular part of a transplant recipient's life.
Understanding the purposes of the tests can make it easier to follow specific instructions and get
accurate results. Talk to your transplant team about what ongoing monitoring will be needed, how
much can be done at home, and what will require visits to the transplant center or other locations.

7
Rejection and Anti-Rejection Medications:

Rejection is the body's way of protecting itself against a foreign invader such as infectious germs.
Rejection can happen when the body sees the transplanted organ or tissue as a foreign invader and
attempts to destroy it. There are two types of rejection, acute and chronic. Acute rejection happens
very quickly; chronic rejection is the slow failure of a donated organ to function.

Immunosuppressant (or anti-rejection) medications that prevent the body from rejecting the
transplanted organ are an important part of life after transplant surgery. In general, a suppressed
immune system can be slower in defending against germs. Transplant recipients may be somewhat
more vulnerable to infections and may find it more difficult to recover from certain infections and
illnesses. This is especially true for the first 6 months after surgery but will remain an ongoing
concern. You can protect your health by following good prevention practices to avoid illness and
injury and by seeking treatment early when illness does occur.

Know Your Pharmacist:

Transplant recipients usually need to take an array of medications. Some will be new medications
prescribed after transplant surgery. Some may be continued from before surgery. Certain
medications may be taken several times a day while others are taken only on certain days. Transplant
team doctors may have to change medications or adjust dosages every few days or weeks to find the
best combination for maximum benefit and minimum side effects. In short, managing medications
after transplant surgery can be complex and confusing.

Selecting a good pharmacy and getting to know your pharmacist can help you understand your
medications and manage your medication schedule. Pharmacists can help explain effects and side
effects of medications. Sometimes they can recommend tools like timers and organizers to help you
keep track of medications. The social worker at the transplant center should be able to provide a list
of pharmacies to choose from.

Pharmacy services and prices vary. If you are not limited to particular companies by your insurance,
shop around for lower prices and for features such as home delivery, refill reminders, and ability to
speak with a pharmacist directly by phone or in person. Important questions to ask your pharmacist
about pharmacy services and about medications are listed at Medications: Protecting Your
Transplant—Questions to Ask and on page 41 of What Every Patient Needs to Know (PDF - 3.64MB)
.

Stay Healthy:

Choosing a healthy lifestyle is as important for organ recipients as they are for everyone. Follow a
low-fat diet, exercise regularly, and avoid smoking to promote the health of your new organ as well
as the rest of your body. Your doctor and the transplant center dietician can help you develop a plan
for healthy diet and appropriate exercise as you heal and transition to a normal healthy life.

8
Eat Well:

 Eat a balanced diet with plenty of fruits and vegetables.

 Eat a minimum amount of salt, processed foods and snacks.

 Use herbs and spices to add flavor, instead of salt.

 Watch your food intake and drink plenty of water (unless you are told to limit fluids).

 Try to eat high-fiber foods, such as raw vegetables and fruits, which make you feel full.

 Add calcium to your diet by eating calcium-rich foods, such as low-fat dairy products and
green, leafy vegetables or calcium supplements.

 Eat as little fat and oil as possible.

 Read food labels so that you can be smart when food shopping.

 Become more aware of serving sizes that are listed on food labels.

 Because protein helps you build muscles and tissue, which will help you heal, eat foods high
in protein, such as meat, poultry, fish, eggs, nuts (without salt) and beans.

Exercise:

Most people are weak after any surgery. Transplant recipients must recover both from the operation
as well as the illness or injury that caused the need for a transplant.

As a result, exercise and muscle strain should be limited when you first return home. Talk with your
doctor about what to expect for physical reconditioning and any activity limitations or restrictions.

As you start to feel better, regular exercise will help you regain your strength. Because you may feel
tired at first, you should take rest breaks during exercise. Gradually, increase the amount and type of
physical activity you enjoy. Enjoy life.

9
The deceased donation process

Registering as a donor
The process of donation most often begins with your consent to be a donor by registering in your
state. Signing up does not guarantee you will be able to donate your organs, eyes, or tissues—and
registering usually takes place many years before donation becomes possible. But it is the first step
to being eligible to save lives.

Medical care of potential donors

For someone to become a deceased donor, he or she has to die in very specific circumstances. Most
often, a patient comes to a hospital because of illness or accident, such as a severe head trauma, a
brain aneurysm or stroke.

The patient is put on artificial or mechanical support, which keeps blood with oxygen flowing to the
organs. The medical team does everything possible to save the patient's life. At this point, whether or
not the person is a registered donor is not considered.

Brain death testing

Even though the medical team members do everything they can to save the patient's life, sometimes
the injuries are too severe and the patient dies.

If the patient is dead and is not responding, physicians will perform a series of tests to determine if
brain death has occurred. A patient who is brain dead has no brain activity and cannot breathe on his
or her own. Brain death is death and it is irreversible. Someone who is brain dead cannot recover.

Only after brain death has been confirmed and the time of death noted, can organ donation become
a possibility

The organ procurement organization

The hospital notifies the local Organ Procurement Organization (OPO) of every patient that has died
or is nearing death. This is in keeping with federal regulations.

The hospital gives the OPO information about the deceased patient to confirm whether he or she has
the potential to be a donor. If the person could be a candidate for donation, a representative from
the OPO travels immediately to the hospital.

10
 Authorizing donation
The OPO representative searches to see if the deceased is registered as a donor on their state
registry. If so, that will serve as legal consent for donation.

If the deceased has not registered, and there was no other legal consent for donation, such as a
notation on the driver's license, the OPO will ask the next of kin for authorization.

After authorization, a medical evaluation takes place, including obtaining the deceased's complete
medical and social history from the family.

The matching process

If the deceased person's evaluation allows donation, the OPO contacts the Organ Procurement and
Transplantation Network (OPTN).

The OPTN operates the national database of all patients in the U.S. waiting for a transplant. The OPO
enters information about the deceased donor into the computer system and the search begins.

The computer system generates a list of patients who match the donor (by organ). Each available
organ is offered to the transplant team of the best-matched patient.

The transplant surgeon determines whether the organ is medically suitable for that patient or may
refuse the organ—for example, if the patient is too sick to be transplanted or cannot be reached in
time.

Most organs go to patients in the area where the organs were recovered. The others are shared with
patients in other regions of the country.

Recovering and transporting organs

While the search for matching recipients is under way, the deceased donor's organs are maintained
on artificial support. Machines keep blood containing oxygen flowing to the organs. The condition of
each organ is carefully monitored by the hospital medical staff and the OPO procurement
coordinator.

A transplant surgical team replaces the medical team that treated the patient before death. (The
medical team trying to save the patient’s life and the transplant team are never the same team.)

The surgical team removes the organs and tissues from the donor's body in an operating room. First,
organs are recovered, and then additional authorized tissues such as bone, cornea, and skin. All
incisions are surgically closed. Organ donation does not interfere with open-casket funerals.

Organs remain healthy only for a short period of time after removal from the donor, so minutes
count. The OPO representative arranges the transportation of the organs to the hospitals of the

11
intended recipients. Transportation depends on the distance involved, and can include ambulances,
helicopters, and commercial airplanes.

Transplanting the organs

The transplant operation takes place after the transport team arrives at the hospital with the new
organ. The transplant recipient is typically waiting at the hospital and may already be in the operating
room awaiting the arrival of the lifesaving organ.

Surgical teams work around the clock as needed to transplant the new organs into the waiting
recipients.

12
The living donation process

Living organ donation

Living donors potentially can donate:

One of the two kidneys

A kidney is the most frequently donated organ from a living donor. The donor's remaining kidney
provides the necessary function needed to remove waste from the body.

One of two lobes of their liver

Cells in the remaining lobe of the liver grow or regenerate until the liver is almost its original size.
This re-growth of the liver occurs in a short period of time in both the donor and recipient.

A lung or part of the lung, part of the pancreas or a part of the intestines

Although these organs do not regenerate, both the donated portion of the organ and the portion
remaining with the donor are fully functioning.

Living tissue donation

Some of the tissues donated by living donors are:

 Skin, after certain surgeries such as an abdominoplasty

 Bone after knee and hip replacements

 Healthy cells from bone marrow and umbilical cord blood

 Amnion, donated after childbirth

 Blood, including white and red blood cells, platelets, and the serum that carries blood cells
throughout the circulatory system.

A healthy body can easily replace some tissues such as blood or bone marrow. Both blood and bone
marrow can even be donated more than once since they are regenerated and replaced by the body
after donation.

Suitability to donate
Potential living donors are evaluated by the transplant center where they intend to make the
donation to determine whether they are suitable to be a donor.

The evaluation is performed to make sure that no adverse physical, psychological, or emotional
outcome will occur—before, during, or following the donation.

13
Generally, living donors should be physically fit, in good health, between the ages of 18 and 60, and
should not have (or have had) diabetes, cancer, high blood pressure, kidney disease, or heart disease.

The benefit of saving another by becoming a living donor must be weighed carefully against the risks
that come with any major surgical procedure, as well as financial considerations. A healthy donor
faces the risk of an unnecessary major surgical procedure and recovery.

 A small percentage of patients have had problems maintaining life, disability, or medical
insurance coverage at the same level and rate as previously.

 There can be financial concerns due to possible delays in returning to work because of
unforeseen medical problems.

 As with any major surgical procedure, there is a small risk of complications and/or death.

You can find out more information about living kidney donation from the National Kidney Foundation
or from Informate.org a site in both Spanish and English that discusses financial issues and
benefits and risks.

Long-term effects and follow-up

The National Institutes of Health (NIH) is conducting a study to collect information on the outcomes
of living donors over time. At present, follow-up reviews of living donors by some transplant centers
show that living donors, on average, have done very well over the long term.

However, there is some question about the effects of stress on the remaining organ. There could be
subtle medical problems that do not develop until decades after the living donation. The effects are
not completely known at this time. To better understand the safety of all living donors, it is critical
that the long-term effects of living donation are studied further.

The decision to donate

The decision to be a living donor is very personal one. The potential donor must consider the
possibility of adverse health effects after donation—as well as the potential to save the life of the
recipient, who may be a loved one.

Because we don't know what the short-term and long-term effects to the donor will be, the Federal
government does not actively encourage anyone to be a living donor.

However, the Federal government does recognize the wonderful benefit that this gift of life provides
to the patient awaiting a transplant and has several ongoing programs to study, support, and protect
the living donors who do choose to provide this gift.

The decision to say yes both to organ donation after death and/or as a living donor is the focus of
several ongoing and completed research projects conducted across the nation, many of which are

14
supported by the Division of Transplantation, Health Resources and Services Administration, U.S.
Department of Health and Human Services.

Grants and assistance for living organ donors

The Regents of the University of Michigan (Michigan), in partnership with the American Society of
Transplant Surgeons (ASTS), has been operating this Program under a cooperative agreement with
HRSA since 2006. The National Living Donor Assistance Center (NLDAC) was established to increase
access to transplantation, particularly for individuals of lesser financial means. The Program does not
promote living organ donation and it has no performance goals for increasing the number of living
organ donors. The NLDAC helps potential donors with travel, lodging, and meal expenses
associated with the organ donation process. These expenses may not be supported under any state
compensation program, insurance policy, or under any federal or state health benefits program; by
an entity that provides health services on a prepaid basis; or by the recipient of the organ.

15
16