HARLEM—Shanghel Meighan wanted to preserve the umbilical cord blood from the births of her three sons because she heard about its life-saving potential.
The blood, which is collected from the cord between the baby and the placenta, supplies stem cells which can treat 76 different diseases, including diabetes, sickle cell anemia and leukemia. But at a cost of up to $2,000 to collect and at least $125 per year to preserve the material in a private bank, Meighna could not afford it.
So when the 35-year-old was pregnant with her now 7-week-old daughter Erin, the staff at Harlem Hospital approached her about donating the umbilical cord blood to a public bank at no cost to her.
Meighan embarked on an educational program set up by the hospital and Preserve Our Legacy, Inc., a group dedicated to raising awareness among minorities about the need for umbilical cord blood and bone marrow donations, that counsels women and their families from their first prenatal visit.
"We are all brought here for a reason. Maybe she is going to be able to help someone," Meighan said while looking at her daughter.
Harlem Hospital officials believe the counseling component makes the P.O.L Umbilical Cord Blood Program at the obstetrics and gynecological clinic the first program of its kind in the country.
Since its inception in December, the hospital has collected 20 units of cord blood, well above their expectations and a desperately needed boost in the African-American and Latino communities where donations of bone marrow and cord blood lag severly behind that of whites. Umbilical cord blood has unique characteristics that make it desirable for transplants.
Of the 9 million potenial bone marrow donors on the national registry, only 650,000 — or 7 percent — are African American. Caucasians make up almost 80 percent of the national donor registry.
It's a disparity that leaves African Americans, Latinos, Asians and Native Americans at risk of dying from diseases that might be treated, said Dr. Edgar Mandeville, director of Obstetrics and Gynecology for Harlem Hospital.
The reluctance, particulary from African-Americans, stems from a long distrust of the medical establishment that dates back to the Tuskegee Syphillis experiments where poor black men in the South with syphillis went untreated for decades as part of a federally-funded study.
"Minorities have an historically based general reluctance to get involved with anything that doesn't seem mainstream. We are overcoming those obstacles with education," Dr. Mandeville said.
Shana and Brett Melius founded Preserve Our Legacy to honor Jaden Hilton, the African American 3-year-old son of a friend who died of leukemia in 2007 while the pair was organizing a celebrity basketball game to try and find a bone marrow transplant match.
"It just touched us because it happened so quickly. We didn't realize we had so little time," Brett Melius said of Jaden's death.
"It's a trust issue," said Shana Melius. "You say stem cells and people think about cloning."
The couple says they seek to educate African Americans and Latinos that the umbilical cord, if not utilized, will be treated as medical waste and thrown away. The procedure presents no risk to mother or child.
And because African Americans tend to have more genetic diversity, it's more likely that a match will have to be of the same race.
"I ask potential donors how many people in their family have diseases such as sickle cell, leukemia and cancer?" Elanor Griffin, senior manager of Harlem Hospital's Umbilical Cord Blood Program, said.
"And then I let them know there could be a cure for the diseases their family members have and that they are carrying that cure right now."
The Melius' also created "Jaden's Law" which encourages doctors to inform patients of their option to donate. It was signed into law by New Jersey Gov. Chris Christie in August 2010. They are working on a similar law in New York and hope the Harlem Hospital program is only the begining.
"The goal is to have this in every public hospital in America," said Shana Melius.
Meighan said she hopes her decision will make it easier for others to overcome their mistrust and also donate umbilical cord blood.
"In life, we all take chances," Meighan said. "You can't hold yourself back based on the past."