Local Marrow Donor Drive Set For June 6

By Jan Howard

A local drive being planned to benefit the National Marrow Donor Program may hold the key to life for someone with leukemia, aplastic anemia, or other life-threatening diseases that are curable through unrelated stem cell transplantation.

The tissue drive is scheduled for June 6, from 4 to 8 pm, at Integrated Rehabilitation Services, 137 Greenwood Avenue, Bethel, located next to the United Methodist Church. A simple blood test determines tissue type. The New England Marrow Donor Program (NEMDP) is responsible for the drive.

For an appointment for the drive, call 203/730-9994. For information about marrow transplants, call the New England Marrow Donor Program at 1-800/676-4545.

Frans Van Vliet of Bethel, who opened Integrated Rehabilitation Services about a year ago, is organizing the drive.

 Mr Van Vliet, who is a registered bone marrow donor, said, “The need is all over the world. The more people who register the better.”

Twenty people have already registered for the tissue drive, he said, and he has sent notices about the drive to local churches and radio stations.

Donors must be between 18 and 60 years old, in good health, and within weight guidelines set by the National Marrow Donor Program.

 There is a shortage of minority people being registered, Mr Van Vliet said. Federal funding is available to test anyone who is African American, Hispanic, Asian or American Indian.

 Because there are community funds available, Mr Van Vliet said, the cost is only $21 per person for Caucasions. Without this funding, the test would be $80.50.

Volunteers are asked to watch a video and fill out medical information and a consent form. A tissue typing consists of donating a sample of blood. The whole process takes about 20 minutes.

Carol Ann Baldwin of the NEMDP said at any given time there is an average of 4,000 patients searching the registry. While the marrow program is national, it is linked internationally to other data banks.

Approximately 30 percent of patients needing a marrow transplant will have a family member, usually a sibling, who is suitably matched and able to donate stem cells. The remaining 70 percent must search for a compatible donor.

People with leukemia have a 0-15 percent long-term survival rate without a transplant and a 55 percent long-term survival rate with a bone marrow transplant.

The difficulty in finding a close match for a bone marrow transplant is being experienced by William Marsilio, 57, of Newtown, who has myelodysplastic syndrome. The only treatment for this very rare blood disease is a bone marrow transplant.

Most of Mr Marsilio’s family is deceased, and his brother, who lives in Monroe, is not a match. A close match, located recently in the United Kingdom, turned out not to be a match, according to his wife, Terri Marsilio.

“The search is not always easy, whatever the reason,” she said.

Patients and donors are matched by comparing their HLA (Human Leukocyte Antigens) typing. There are six HLAs that are considered important for marrow matching. The closer the match, the better the success rate for the patient.

Mrs Marsilio said at present there are two people in Italy whose preliminary matches look good. The Fred Hutchinson Cancer Research Center in Seattle, Wash. is checking to see if the prospective donors can be tested in Italy to reduce costs, which can be up to $1,700 if the blood samples are brought to the United States for testing. It then costs $2,000 to test each donation.

Mr Marsilio was diagnosed two years ago with chronic myelogenous leukemia. While Interferon and other drugs killed the cancer cells, they also killed his white and red blood cells and platelets, requiring blood and platelet transfusions. While a bone marrow biopsy at that time showed only minute traces of myelogenous leukemia, myelodyspastic syndrome was discovered, which can transform into acute leukemia at any time and progress very rapidly, Mrs Marsilio said.

“It’s like sitting on a time bomb,” she said. “We don’t know when it will transform. It doesn’t respond to other treatments.”

Mrs Marsilio said at present Mr Marsilio is in fairly good health, but if his condition worsens, his body might not be able to cope as well with the bone marrow procedure.

“He’s been a very complicated case,” she said, noting doctors had heard of only two other such cases.

Mrs Marsilio said her husband has a B factor that is not common, which makes it harder to find a donor. “Everyone’s DNA is different. Some people are easier to match.”

Recently, only one donor responded out of five called, she said. The person was not a match.

According to the NEMDP, once a donor is confirmed as a match, a complete physical examination is performed. The donor will be asked to give one to three units of blood before the  marrow collection. The marrow procedure is done in a hospital operating room under sterile conditions. The marrow is extracted from the back of the pelvic bone, using a special needle and syringe. The donor is under anesthesia during the simple procedure. The donor can feel soreness at the site of donation for one to three weeks.

Mrs Marsilio said a recent fundraiser for Mr Marsilio went well, bringing the total raised for the blood marrow transplant to $55,000. The hospital requires a $75,000 down payment toward the $225,000 transplant. Insurance will cover only 80 percent of the cost. The insurance company does not pay for donor search, which costs $800 to initiate the search, plus $410 per donor in the United States to deliver the blood to the hospital in Seattle, and $2,500 per donor to run tests. It costs $26,000 to do the work up on the final donor selected.

A car wash and a tag sale to benefit Mr Marsilio are currently being planned.