What's next for Alaskans tested as possible donors for Susan Butcher.

By ANN POTEMPA

Anchorage Daily News

Published: January 17, 2006

Last month, a record 1,147 people throughout Alaska had their blood drawn in hopes of adding their name to the national bone marrow registry.

Many did it to help Iditarod Trail Sled Dog Race champion Susan Butcher, who's fighting leukemia and needs a marrow transplant. But registering as a possible donor meant they might be matched to many other people needing transplants across the nation.

Since forming in 1987, the National Marrow Donor Program has coordinated more than 20,000 transplants of bone marrow or blood cells, most of which went to people with leukemia or other types of blood cancer.

What does joining the donor registry mean? And if you do match someone in need of a transplant, how do you donate your bone marrow?

Staff at the Blood Bank of Alaska and Puget Sound Blood Center explained the donation process, which can start almost as soon as you are logged into the registry or many years later.

That's what happened to Sheri Hobson-Hill from Big Lake. She registered with the National Marrow Donor Program in 1988 during a Lions Club drive. In 2003 — 15 years later — she got a letter saying she likely matched a man she didn't know who needed new marrow. She was still interested in donating so completed counseling about the procedure, received a lesson on what to expect and eventually flew to Seattle for surgery that removed bone marrow from the back of her pelvic bones.

Hobson-Hill said she felt she had something to give someone else — even though she didn't know that person.

"I feel most fortunate that I was able to give that gift, and I would absolutely do it again," she said.

THE DONOR REGISTRY

Today, more than 5.5 million people are registered with the National Marrow Donor Program, the world's largest registry of volunteer donors, said Andrea Marsden, supervisor for the Puget Sound Blood Center's marrow donor program.

The Puget Sound program recruits donors from Washington and Alaska. So far, about 62,000 of the two states' residents have signed up, about 9,000 of them Alaskans.

Only people age 18 to 60 can join the National Marrow Donor Program, Marsden said. Donors 55 or younger are preferred. If two possible donors are available, transplant centers will pick the younger donor. The donation procedure becomes riskier with age, and the recovery period may be longer.

Unless they say they want to be removed from the registry sooner, donors stay on until they turn 61, Marsden said.

To sign up as a donor, people must fill out paperwork that shows they meet the age requirements and don't have health conditions that would prevent them from donating. They also have to give a blood sample that's tested and typed.

"The testing is so simple," said Keri Scaggs, a California woman who repeatedly visits Alaska to sing and take photographs.

In the late 1990s, she entered the national marrow registry when her sister had recurring cancer and was looking for a match. Scaggs and her sister were not compatible, but Scaggs stayed on the list in hope of helping others.

"After watching my sister die, how could I hold on to something that could help someone else?" she asked.

FINDING THE MARKERS

In 2004, Scaggs heard that she might be a match for another woman in need. She went in for more blood tests but later learned the woman had sought other treatment options and the donation wasn't needed.

These blood tests are collected to match the donor and the recipient. Everyone has a blood type such as A, B or O but that's not what laboratories focus on when matching marrow. Instead, they look for the type of human leukocyte antigen, also called HLA markers. These are small proteins found on white blood cells, Marsden said. For a donor and recipient to be paired, the donor's HLA markers need to match the recipient's to a certain degree.

HLA markers are genetically passed from parents to children, so people in need of bone marrow donations are more likely to find matches among family members — especially siblings — than nonrelatives.

"About 30 percent of people find a match within their family," Marsden said.

But that means the majority don't, and they're forced to find a match through the national registry of unrelated donors. Butcher has not found a match in her family so has turned to the national registry, said her husband, David Monson.

It's easier for people of some races than others to find matches. A person needing a bone marrow donation is more likely to match a donor of the same race than a donor of a different race, Marsden said.

For example, about three-fourths of the people registered with the National Marrow Donor Program are white. That makes it easier for Caucasian people to find matches, because there are more potential white donors than donors of other races. Only 8 percent of the registered donors are black. Only about 1 percent are Native American and Alaska Native, said Mysti Skelton, the Blood Bank of Alaska's bone marrow coordinator.

If a match is made, the donor and recipient will not learn many details about each other to protect confidentiality, Marsden said. If both parties agree, they can meet one year after the donation.

THROUGH THE HIP

During her late 40s, Hobson-Hill heard she matched someone. Before donating her marrow, she had another round of blood tests to confirm the match and was paired with a coordinator who made sure all her questions were answered. She learned what the donation procedure entailed and what side effects she could expect.

"I had no questions about what was going to happen," she said.

Hobson-Hill said she was repeatedly asked if she still wanted to go through with the donation.

"At any time, you can stop the process," she said. "It's up to you."

In May 2003, Hobson-Hill flew to Seattle to donate bone marrow. All of her costs, including travel, hotel, food and medical fees, were covered. Marsden said those costs are typically covered by the National Marrow Donor Program, the Puget Sound Blood Center and the recipient's health insurance.

The purpose of the process is to pull blood stem cells from the donor and give them to the recipient. Blood stem cells normally live in the bone marrow, and they can create other types of blood cells, including red blood cells, white blood cells and platelets, Marsden said.

The recipient prepares for the donation by receiving chemotherapy, radiation or both to destroy the diseased marrow. Then the cells collected from the healthy donor are given to the recipient through the bloodstream. The cells travel to the marrow and multiply, according to the National Marrow Donor Program.

When Hobson-Hill flew to Seattle to donate her marrow, she checked into the hospital in the morning. She was given general anesthesia, and the doctor inserted a large, hollow needle into the pelvic bones in Hobson-Hill's back and removed marrow.

The amount removed depends on how much is needed by the recipient, Marsden said. The marrow is packaged and then flown or driven to the recipient in need. The donor's body replaces all marrow removed in four to six weeks, according to the National Marrow Donor Program.

The entire procedure typically lasts an hour or two, and the donor is sent home or to a hotel that afternoon. Most donors will have pain and discomfort for a few days to a week, but they are walking right after the procedure, Marsden said. They're also given pain medication should they need it. More serious complications are rare, although Marsden said one donor went through massage therapy to alleviate nerve pain in her leg after the procedure.

Hobson-Hill said she felt pain and stiffness and was slow-moving, but all of that waned during the week after her donation.

STRAIGHT FROM BLOOD

A different procedure, called peripheral blood stem cell collection, can be used during bone marrow transplants. Marsden explained the process:

The donor is given a drug for five days to encourage the bone marrow to send the stem cells into the bloodstream. After receiving the drug, the donor is connected to a machine, with a needle inserted in each arm. The first needle pulls blood out and circulates it through the machine, which removes the stem cells. The rest of the blood is returned to the donor through the other needle.

This procedure can take four to 12 hours, Marsden said, and the donor must sit the whole time while the machine removes the blood stem cells. There's no anesthetic, the only pain being from the initial poke of the needles. Side effects may include head, bone or muscle aches during the days leading up the procedure when the donor is receiving the drug, according to the national donor program.

Doctors, not donors, decide which procedure will be used to remove the stem cells. Regardless of the procedure, Alaska donors will have to visit a Seattle hospital, Marsden said.

HOW TO REGISTER

Skelton of the Blood Bank of Alaska said her organization plans to have another bone marrow donor drive Feb. 11 in front of the Egan Center in Anchorage. Times have not been set yet, but people who are interested can call Skelton at 376-1195.

People who don't want to wait for a donor drive can call the Puget Sound Blood Center to receive the necessary paperwork for donation. If they qualify, the center can mail tubes so blood can be drawn at Alaska clinics and sent back to Seattle, Marsden said.

This may come with a cost, however. Depending on whether there's funding to cover a donor drive, a person wanting to register may have to pay up to $65 for the laboratory costs to complete the test, Marsden said. All white people who want to sign up during the Feb. 11 drive in Anchorage will have to pay $65, Skelton said.

Minorities, however, do not have to pay because the government is trying to recruit more of them to the registry, Marsden said.

Those wanting more information should call the Puget Sound Blood Center at 1-800-366-2831.

Daily News reporter Ann Potempa can be reached at 257-4581 or apotempa@adn.com.