Organ, Tissue, Blood Donation: ‘Give So That Others May Live’

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Our program addressed the spiritual, religious, ethical, and practical issues that our sisters of diverse ethnicities face if they are confronted with a life-threatening illness that requires donations of blood, tissue, marrow, or organs. Speakers gave up-to-date information about these issues and answered questions from the audience.

Our first speaker was Paula Miller, the Executive Director of the William G. Pomeroy Foundation. She is also director in the office of the CEO for CXtec, a technology company.  In her role, she is responsible for the community relations and philanthropic efforts of the company.  Paula explained the importance of the National Marrow Donor Program and its “Be the Match” Registry.

Paula introduced her topic with some statistics.  Every five minutes someone is diagnosed with blood cancer; every 10 minutes someone dies of blood cancer. Leukemia is the most common fatal disease for children in the United States, and a bone marrow transplant may be the only hope for a cure. Only three out of 10 patients will find the match they need to save their life. Because tissue traits are inherited, a patient will most likely be found from someone of his or her own race. Sixty percent of people of color needing a transplant will not find a match, and will most likely not survive. 

For example, William G. Pomeroy was diagnosed with AML, an aggressive form of leukemia, in October of 2004. His doctors stressed the importance of a bone marrow transplant to save his life. There was no family match, but Bill is Caucasian, and the Registry had hundreds of potential matches for him.  Bill received a successful transplant and is doing very well. 

However, Bill realized that not everyone has the same chance that he had, because finding a match means finding someone who is genetically like you. And if your race or ethnicity is not well represented on the voluntary donor registry, a match is far less likely.  In July 2009, Caucasians made up 73 percent of registered donors, Hispanic/Latinos were 9 percent, African American/Blacks were 8 percent, people of multiple race were 3 percent, and American Indians were 1 percent.  So Bill set out to give everyone the same chance he had received by establishing a private foundation to increase the number of under-represented populations on the Registry. Helen Hudson and Syracuse Police Chief Frank Fowler became co-chairs of the project, reaching out to every racial and ethnic community in greater Syracuse. In four years they added 3,500 donors to the Be the Match Registry.

Antigens are markers found on our cells, and half are inherited from your mother and half from your father. Thus, parents are unlikely to be matches. In fact, only 30 percent of those needing a transplant find a donor within their own family.  Of the remainder, 70 percent find a match in the registry.  The registry now has 7 million donors, but it doesn’t contain enough donors of African-American, Hispanic, Asian, or Native American backgrounds. By increasing the number and diversity of those on the registry, the Foundation hopes to raise the percentage of patients that find a match.

Registering to become a donor is easy and painless.  To register, one must be between 18 and 60 years old, and be in general good health.  The upper age limit is for the safety of the donor as well as the recipient. The donor must provide a cheek swab that will be tested to determine your tissue type, and you must be willing to donate to any patient.  Paula brought forms and cheek swabs and was ready to sign up donors after the meeting.  If you have already enrolled, remember to update your contact information including your name, phone number, address, or email.

If you are selected to be a donor, the procedure is performed locally, in one of two ways. (Eighty percent of donations require no surgery). The first method, peripheral blood stem cell donation, is like giving blood but requires six to eight hours on a machine that takes blood from one arm, separates stem cells from it, then returns the major portion of the donor’s blood into the other arm.  The stem cells are flown to wherever the patient is in the country and he or she receives the life-saving match.

The second method does require outpatient surgery under general anesthesia, with the donor returning home the same day. Pain is minimal, requiring only Tylenol. The donor can resume normal activities within one to seven days with the knowledge that he or she has saved a life.

Paula told us recent stories of local people of color or mixed ancestry who needed transplants.  Natasha, a black student at Yale Medical School, died because no match was found.  Barbara, a 55-year-old woman, had leukemia and was unable to find a match between 2000 and 2009, when she died.  Eddie and Eunique were teenagers hospitalized at Upstate.  Eunique wanted to raise awareness about the lack of African-American and mixed race donors. She gave TV and newspaper interviews, and moved the hearts of Paula, Helen, and all of those who knew her.  Eddie and Eunique became friends while both patients at Upstate, and died at Strong Memorial Hospital within days of one another. The Upstate University Hospital started a fund in their names.

Some local people are still awaiting matches. Taylor is a 17-year-old girl from Cazenovia High School, now at Upstate Hospital. She is one-quarter Native American, and there is no match. Paula has done drives at the Onondaga Nation, at the Oneida Nation, and at Turning Stone, but no match has been found. Jennifer is a wife and mother with AML. She has been an attorney for 20 years, with a practice benefiting children and families. She has not found a match.  See more of her story at www.savejenaustin.com.

There are success stories, too.  Jasmina is a 5-year-old with leukemia living in Harlem. After her condition was publicized, thousands of New Yorkers joined the registry, and a match was found. She had a successful transplant last June. (Sadly, following this meeting we learned that Jasmina passed away on 1/27/10. Ten thousand people had joined the registry at her sponsored drives, and 12 patients have found matches so far due to this effort. She was an incredibly brave and inspiring little girl. We are all deeply saddened by this news.)

Recent research has found that a bone marrow transplant can cure severe sickle cell disease, a condition that affects one in 500 African Americans.  Since a match is more likely if patient and donor are the same race, signing up black donors will be critical to eradicating this debilitating disease.  Paula showed a video of Paizley, who received a successful bone marrow transplant for sickle cell.

Every day there are 6,000 searches of the registry. Transplants of bone marrow or stem cells can cure or treat 40 different diseases.  Patient insurance, the National Marrow Donor Program, or government programs pay the expenses for both the patient and the donor. The donor is reimbursed for any travel expenses.

People who have been bone-marrow donors say they are treated like heroes, and most would do it again if another match is found. However, matches are so difficult that a donor is unlikely to be called more than once. To join a donor registry, go to www.BeTheMatch.org.

Our second speaker was Jessica Duffy, the Hospital and Community Relations Coordinator at the Central New York Eye and Tissue Bank.  She has worked there for over four years on both clinical and administrative issues.  The organization has six full-time staff, plus per diem workers when needed. The CNYETB collects tissues and organs from recently deceased donors, and uses them to help sick or injured patients locally, nationally, and internationally.  A single donor can help up to 50 people who need corneas, sclera, bones, heart valves, arteries, veins, skin, or nerves. In addition, scientists can use tissues and organs to advance research that is necessary to develop procedures for future cures. The Eye and Tissue Bank gets weekly updates on the kinds of tissue researchers need, so it changes constantly. Donor forms ask donors whether they want to donate for transplant, research, or both. Hospitals check every death against the two donor registries.

Bones and tissues for transplant are freeze-dried before use and do not need to be matched for type; they can be given to anybody. Since corneas and sclera have no blood in them, there is no necessity for a match there, either. 

Jessica corrected a few misconceptions about eye donations: A person with diabetes or cancer can donate; a person who wears glasses or is blind or has glaucoma or macular degeneration can donate eyes.

Jessica explained that there has been a change in the organ donor registry. Before June 2008, a donor form indicated intent to donate upon death, but the final decision was up to the next-of-kin, a decision that often caused delays that made the organs unusable. The new donor form makes the donor the final authority and family cannot override the donor’s decision. In addition, next-of-kin is no longer decided by the state law, but by the donor’s legal proxy statement. 

Jessica advised that anyone signing a donor form talk to their family about the decision, in order to avoid traumatic feelings at the time of death. The family should also be prepared for the possibility that a donation may not be accepted. Donation helps make something good happen from the tragedy of losing a family member: saving other lives.  Being denied that opportunity can be an additional pain.  Jessica also explained that simply signing the organ donation form on the back of a driver’s license is ineffective, because it does not put you on a list and your license may be unavailable or overlooked at time of death.

Jessica explained the workings of the Eye and Tissue Bank.  They don’t waste any tissues because they keep close track of their inventory and do not remove what is not currently needed.  Eyes must be taken within 15 hours of death, tissues within 24 hours.  If consent or driving time to reach the donor take too long, the organs will be unusable.  Once tissues or organs are taken, the family can still hold a normal, open-casket funeral if they wish.

The biggest obstacle to donation is lack of education. People do not know what miracles can be performed, or believe that they are not eligible to donate. The criteria for Red Cross blood donation and for bone marrow and stem cell donation are more restrictive.  But anyone can donate eye and tissue upon death. And donor status will not affect end-of-life care.  However, it is necessary to sign up where you live, as registrations made in another state will not show up on local registries. However, everyone was surprised when Jessica told us that several mid-Western states have no registries at all.

Jessica said that some people say that they are ethically opposed to organ donation, but she made available a list of 29 religious groups including various branches of Christianity, Buddhism, Hinduism, Islam, Judaism, and Shinto that either support or have no position on donation. Instead, they make it an individual choice. As with the bone marrow registry, Caucasians sign up and donate most often. Those at the meeting who wished to sign up to be donors, were invited to do so at the end of the meeting, since all of the necessary forms were available. Donors can specify which tissues they wish to donate.  For more information, see www.cnyetb.org or www.unyts.org.

Betty Lamb, a WTB member, told of the recent loss of her adult daughter. She received an 11 p.m. phone call from the hospital about possible organ donations. The call lasted for at least half an hour, because there was so much information needed. Betty was grateful that after her donation, the hospital kept in touch with a plaque, mail, and a memorial quilt. These help to ease her pain. Betty had an open casket funeral for her daughter, which also helped her adjust to the loss. Her father had died in a plane crash, and with no body to bury, she felt there was no closure.

Betsy Wiggins, one of WTB’s co-founders, told us of her son Alan who died of a stroke in 1996 at the age of 26. He had been watching television when his roommate left the room, and a minute later the roommate, an EMT, found him unresponsive. Alan was immediately taken to a hospital but could not be revived. Betsy and Alan’s father made the difficult decision to donate Alan’s tissue and organs. Later, Betsy received information about the following people who benefited from Alan’s bone grafts. They ranged in age from 16 to 73 years old, and had a wide variety of medical problems including unstable rotator cuff; disease of the spinal roots; herniated disk; stricture of the spinal canal; acute inflammation of the marrow and surrounding bone; degenerative hip joint; torn ACLs; failed hip revision; and degenerative lesion of the spine. Alan’s eyes, lungs, heart valves, pancreas, brain fibers, skin, cartilage, tendons, small intestine, dura covers, and fascia were also used.

Betsy believes that Alan is still helping, still giving. Several of his recipients have signed up on registries. Betsy herself is now on a donor registry.  She has no regrets about the donation; it has been a painful process but it was a gift as well. The funeral had an open casket, and it was still Alan. She urged us to talk to our families, including our children, so that we can do what we need to do when we need to do it. 

Betsy later remembered that they also donated Alan’s coffin to a person who had died of AIDS. They had an open coffin for the family because Alan died so suddenly.  Particularly affected were Alan’s sister, grandfather, uncles, aunts (one who flew in from Paris for the service) and many cousins that Alan had grown up with. Betsy and Alan’s father felt it important that their distraught family be able to see Alan and say their good-byes. They had Alan’s body cremated after the service, so the donation of his coffin was one more of the mysterious gifts Alan gave a total stranger as a result of his death.

WTB’s other co-founder, Danya Wellmon, added that she wished someone had asked her about donation when her own daughter died.

When we entered today’s meeting we were asked our blood types, which were then indicated on our name tags. As a closing, we arranged ourselves in a circle, grouping ourselves with those of the same blood type. Danya reminded us of WTB’s second Interfaith Blood Drive in January and asked us to donate. Syracuse needs 3,000 pints of blood per month, and seldom has any extra.  Seventy percent of Americans are eligible to donate, but only 4 percent do.  There is no upper age for donation. 

To emphasize the importance of donation, Danya then selected a woman with blood type A and took her across the room to “save” a woman who is type AB. Then a woman who is type O was taken to “save” a woman who is type B and another who is type A. Then a woman who is type AB was taken to “save” a type O woman who needed plasma. Finally, women who didn’t even know their blood types were able to “save” the remaining women with platelets; these have no typing, so any donor can give to any recipient.

As women held hands with those they could save, Judy Antoine read a closing thought, “To Our Community of the Heart.”