Cord-blood donor is limited in choice - Catholic Courier

Cord-blood donor is limited in choice

Some western New York Catholics cheered in 2006 when then-Gov. George E. Pataki announced the allocation of $10 million in state funding to establish an umbilical-cord blood bank and research center in Syracuse.

Yet four years later, the blood bank has not been established, it is unclear what happened to the money, and expectant families in upstate New York have only a national option if they want to donate the blood from their children’s umbilical cords.

Rich in so-called “adult” stem cells, umbilical-cord blood can be collected from the umbilical cord and placenta moments after a baby’s birth. Collection does not harm the mother or child, and the Catholic Church considers umbilical-cord blood an ethical source of stem cells for medical treatment and research.

Although stem cells from umbillical-cord blood have been used successfully to treat such diseases as leukemia, lymphoma, and sickle-cell, immune-deficiency and metabolic diseases, most units of umbilical-cord blood are routinely discarded within the Diocese of Rochester as medical waste.

Representatives of the State University of New York Upstate Medical University in Syracuse, which operates Upstate University Hospital, and of project proponent state Sen. John DeFrancisco of Syracuse did not respond to questions about the project’s current status and what happened to the promised $10 million.

A spokesman for the state health department, meanwhile, said that the project has been held up because of lack of funds due, in part, to the state’s budgetary crisis.

“There is a preliminary concept, and we certainly have supported it, but basically the funding hasn’t been identified,” said Peter Constantakes, spokesman for the state Department of Health, which was a partner in the project.

Maria Spencer, director of legislative relations for the National Marrow Donor Program — a nonprofit organization designated by the federal government to coordinate donations of bone marrow, peripheral blood stem cells and cord blood nationwide — said her organization was aware of the proposed Syracuse cord-blood bank and has spoken with the state Department of Health about it.

“We don’t know the complete answer of what is going on there, but we did find out some money had been put aside, and I believe what happened was that it was used for capital improvements at the university,” Spencer said.

She noted that cord-blood banks can be very expensive to establish and to operate. That is why her agency is putting greater emphasis on setting up hospitals as collection sites for the 21 public cord-blood banks that already exist across the country. These public cord-blood banks only accept donated umbilical-cord blood at hospitals that have been designated as collection sites.

“We have been looking for opportunities to talk with folks in the state Legislature to support expanding donations in New York state,” Spencer said.

Although no local collection sites have been established for cord-blood donation, one privately held company, Lifeforce Cryobanks, accepts cord-blood donations from throughout the country. The company, which also privately banks cord blood for the exclusive use of clients’ families, can only accept a limited number of donated units per month and typically receives more requests than it can accommodate, according to Dr. John R. Edwards, president, chief operating officer and chief medical officer.

He noted that some requests are denied for health reasons based on a screening of potential donors before the 34th week of pregnancy.

“Being willing to donate — whether it is blood or cord blood — is a very generous act, even if you are not able to donate because of health, a pre-existing condition, the hospital doesn’t collect it or another health reason,” said Edwards, noting that he has seen many successful cord-blood treatments during his 20 years as a transplant physician.

Donors pay nothing to make umbilical-cord blood donations, and a recipient’s insurance company covers the cost of $25,000 to $30,000 for each donated cord-blood unit received. Edwards explained that the high cost is due to the fact that currently only a small fraction of banked units are used for transplants.

More than 10,000 U.S. patients are diagnosed each year with illnesses that could be treated with cord blood, and about 70 percent of patients needing transplants do not have matching donors in their family, according to the National Marrow Donor Program. Advocates noted that more cord-blood units are needed, especially from racially and ethnically diverse communities.

The need for more genetic and ethnic diversity in donated cord blood was one reason Catholics across New York lobbied for a 2007 law requiring the state health department to increase public awareness about public and private umbilical-cord banking. The law also requires the department to educate health-care providers about cord-blood banking.

Constantakes said the law prompted the state health department to add information about cord blood to its website. Women with additional questions can call the health department directly or contact the National Marrow Donor Program.

“We get between three calls a week and three calls a month,” Constantakes said.

Kathy Welte, director of the Center of Cord Blood at the National Marrow Donor Program, noted that although there is a need for more awareness of how to donate cord blood, there is already high awareness among pregnant women of the benefits of cord blood, thanks to marketing of private cord-blood banking by a legion of for-profit companies.

Although there is a high awareness of cord-blood benefits, additional funding is needed to help expand umbilical cord-blood donation, Spencer said. To address the lack of funding, the state of California is currently considering adding a fee to birth-certificate requests to raise revenue to establish collection sites.

“Most states right now have budget shortfalls, and it’s challenging at best to get legislators to appropriate additional funds for this,” Spencer said.

At the federal level, Congress is currently reviewing how it funds public umbilical cord-blood banks. The Stem Cell Therapeutic and Research Reauthorization Act of 2010 would reauthorize and re-fund two existing umbilical cord-blood programs: the CW Bill Young Cell Transplantation Program and the National Cord Blood Inventory. Welte noted that these programs allow the National Marrow Donor Program to facilitate about 1,150 cord-blood transplants a year.

Welte said one lesser-known component of the proposed legislation is funding for her agency’s Related Donor Cord Blood Program, which allows expectant families to bank cord blood at participating cord-blood banks at no cost if a sibling has a diagnosed medical condition that can be treated with cord blood. This program operates in partnership with a private cord-blood bank, which allows families from across the country to participate.

“Congress has recognized some situations where the federal government is needed to step in and support families with a potential need,” Spencer said.

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