Five years after approval, cord blood program at a standstill

Senate Minority Leader Len Fasano, R-North Haven, says Democrats caved to Malloy.

Kyle Constable / CTMirror.org

Senate Minority Leader Len Fasano, R-North Haven.

Despite the passage of legislation five years ago that authorized creation of the state’s first public umbilical-cord blood collection bank, organizers say any state-sponsored effort to collect cord blood in Connecticut is at a standstill.

“It hasn’t been that we’ve just ignored it,” said Dr. Edward Snyder, professor of laboratory medicine at Yale University and head of the committee responsible for the program. “It’s been a conscious decision not to proceed forward.”

State officials first backed the program because of the medical opportunities cord blood offers. It contains stem cells that can be used in research or for transplants for people with diseases like leukemia and multiple myeloma.

In recent years, it has become a viable alternative to bone marrow transplants in certain situations. However, cord blood types are significantly more diverse than regular blood types, which can make finding a close match difficult. As a result, state and federal funding has propped up a number of cord blood banks around the country to increase the diversity of cord blood available.

Connecticut’s cord blood program, which received $250,000 in seed funding from the state thanks to a push from Senate Minority Leader Len Fasano, R-North Haven, is still well short of the approximately $2 million it needs to get off the ground, Snyder said. The committee overseeing the program has raised about $13,000 in additional funding from outside sources, bringing the total to $263,000.

But the money has remained untouched. Snyder said that will not change any time soon. Estimates show creating a bank in the state would cost about $10 million, according to Michael Boo, chief strategy officer for the National Marrow Donor Program. Boo said it “didn’t make sense” to proceed with that option – despite pressure from lawmakers – because of the cost.

As a result, Snyder said, his committee quickly began looking for alternatives. By 2013, officials began exploring partnerships with existing cord blood banks in the region. An initial request for proposals found some interest – including from the New York Blood Center – but none of the potential partners was willing to share revenue in a way that would be cost-efficient for the state, Snyder said.

The committee decided not to proceed with any of the options under consideration. Since then, attempts to raise outside funds have been halted and a date for another RFP has not been set, Snyder said.

One of the largest difficulties has been generating support for funding the program fully when nearly all of the beneficiaries would be outside of Connecticut – some even outside the United States.

“The idea that people in Connecticut would donate a cord and it would be used by people in Connecticut isn’t going to work because of the biology,” Snyder said, referring to the difficulty of finding a match for someone close to home. “Would the state want to spend money to provide altruistic cord blood to someone in Nigeria, for example, or someone in Haiti?”

Furthermore, Snyder said, advances in the medical field have resulted in less demand for specific cord blood types, which are far more numerous than typical human blood types. He said transplants with less-than-perfect matches, coupled with chemotherapy, can be nearly as effective as a more-perfect cord blood match.

More importantly, Snyder said, that procedure tends to be significantly less expensive.

Nationwide, cord blood banks are struggling to achieve self-sufficiency. Many that have launched in recent years promised to be fiscally solvent, but have not been, Boo said. Some of these banks are receiving federal funding, as part of an effort to reach a certain diversity threshold in the blood types contained in the banks. But once the threshold is reached, he said, federal funding will probably be cut off, leaving them with few options to remain solvent.

Many of those without federal funding already have gone under, Boo said, which has made it more difficult for Connecticut to find a partner willing to process cord blood coming from the state. And since Connecticut’s population would not be particularly helpful in reaching the diversity goals, those with federal funding have little incentive to partner with the state.

“The market is working against expanding activity into Connecticut, and the focus on making this available for minority units – as one group that continues to benefit from cord blood – isn’t really supported by the population of Connecticut, either,” Snyder said.

Fasano said he hoped the $250,000 in seed funding could generate enough interest for the program to raise the funds it needs to get off the ground, adding that he thought the organizers could “do it right” with $1 million.

But additional money won’t be coming from the state. They will have to raise it themselves, Fasano said.

“We’re broke,” Fasano said. “The cord blood is a great program, but this state doesn’t have a lot of resources. And when we’re cutting medical needs to the poor and we’re putting more burden on municipalities, you’ve got to make tough choices. I’m not about to lobby for cord blood to the risk of programs that people depend on every single day.”

The bill signed by Democratic Gov. Dannel P. Malloy in 2011 provided that the state would facilitate the collection of donated umbilical cord blood shortly after birth. This blood is typically discarded unless parents opt to pay thousands of dollars to privately store it.

Snyder said he would not oppose any effort to return the $250,000 in state money to the general fund because spending it now would “not be a good use of public funds.”

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