Can People with ALS Be Organ Donors?

by Bill Norman on Fri, 2010-01-01 11:55

The fact that many people have the altruistic desire to donate their organs upon their deaths points out the inherent goodness of humans.

But when a potential donor has ALS, can his or her good intentions still be honored?

The answer can be hard to determine. For example, one woman wrote in an online chat that the state of Montana wouldn’t accept the organs of her husband who had ALS, but she later learned that Massachusetts had accepted the kidneys of a man with ALS.

The reason for such discrepancies is that there are 58 regional organ procurement organizations (OPOs) around the United States, and each has slightly different organ acceptance policies, based on guidelines from federal agencies such as the Centers for Disease Control and Prevention, and the Food and Drug Administration.

In the event that the OPO in one region will not accept the organs of a person with ALS, it’s possible that a neighboring OPO will.

Organ acceptability

Beyond regional policy differences, many medical conditions also can preclude people from donating their organs, says Rich Laeng, a public health analyst with the federal Health Resources and Services Administration (HRSA), “but it mostly depends on the donor’s overall health status and what condition their organs are in at time of death.” The urgency of need of a potential recipient also may be taken into consideration.

A determination of organ suitability is usually made by the medical staff that recovers the organs or by the transplant team, which reviews all of the data about the donor.

Organs that can be donated include the heart, heart valves, lungs, liver, pancreas, kidneys, eyes/corneas, tendons, some veins, intestines, skin, bone and more.

The bottom line: “In general, we recommend that all individuals consider themselves potential organ and tissue donors,” says Laeng.

It’s possible to elect to be an organ donor at the last minute, simply by advising medical staff in attendance. Conversely, those who change their minds at the last minute need only advise medical personnel that they no longer wish to donate.

Potential donors should discuss their decision with family members and indicate their intent by signing a donor card, Laeng says, and when the time comes, transplant professionals will determine the suitability of particular organs or tissue. (See “Resources” for more information about organ donation.)

Donating to science

If organ donation proves unworkable, there is still the option of donating to science, as an assist to medical and scientific research.

Most organizations pay for all expenses involved with the process of donating a body to science.  This includes taking possession of a person’s remains, cremation after research is completed and return of the ashes to the family. This whole process typically takes several weeks. Some organizations also pay for the cost of a final ceremony.

The United Network for Organ Sharing, which focuses on donating organs to people in medical need, also has information about donating to research (see “Resources”).

Many educational institutions advertise their programs on the Internet under search terms such as “donate body to science.” 

Note: Paying donors for their organs or bodies is illegal in most countries, including the United States.

Donating for ALS research

Some people with ALS want to donate specifically to institutions doing research on ALS.

Two organizations that accept brains and spinal cords for ALS research are the Harvard Brain Tissue Resource Center and the University of Miami Brain Endowment Bank (see “Resources”).

Other donation organizations, such as MedCure of Portland, Ore., advise donors that their request to have their bodies used for ALS research will be honored if feasible, but not guaranteed. Donations also may be used to find cures for other debilitating conditions, develop new medicines, study human anatomy and perfect new surgical procedures, such as for hip or knee surgeries.

Whether used for ALS or other research, donating a body is a gift to “future generations,” says the company on its Web site.

“There is no replacement for the human body when it comes to teaching and research.”

Organ donation
(888) 275-4772
Answers questions about organ donation and provides contact information for OPOs.

Mayo Clinic Transplant Center
(800) 344-6296 (Arizona)
(904) 953-3309 (Florida)
(866) 227-1569 (Minnesota)

United Network for Organ Sharing
(888) 894-6361
This is the federal government contractor that oversees administration of the Organ Procurement and Transplantation Network.

ALS medical research donation

Harvard Brain Tissue Resource Center
(800) 272-4622

University of Miami Brain Endowment Bank
(800) 862-7246

(866) 560-2525
(Donation for ALS research is not guaranteed.)

Bill Norman
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