Founder of The National Children's Leukemia Foundation Testified At Hearings

Nov. 18, 2010 - PRLog -- The Committee on Health of the New York City Council held a hearing on New York City’s Efforts to Increase Bone Marrow Donation. The hearing was held on November 15, 2010 and one of those asked to testify was Steve Shore, Founder of the National Children's Leukemia Foundation. Mr. Shor shared a personal story of the death of his 17-year-old son who died from leukemia 18 years ago.
  "When told by physicians that my teenage son Meir was seriously ill with leukemia, I can only compare it to having someone take a sledgehammer and pound it into your skull.  The trauma of hearing this type of news is horrific. With this phone call, my life collapsed, stated Shor."  Mr. Shor shared the following information with the New York City Council:            
   Leukemia is treated with a variety of harsh and toxic treatments, including chemotherapy and radiation. For many children, the only true lifesaving treatment is a bone marrow transplant (BMT). So, when Mr. Shor received the news about his son Meir, he was also told that he should immediately begin searching for a bone marrow donor.  
           Finding a donor is extremely difficult.  It is like looking for half a needle in a haystack.  The most likely source for a bone marrow donor is a family member. Yet, seventy (70%) percent of patients will not find a match within their own family, and the chance of finding a non-family match is very, very slim.  In order to locate a donor match, thousands of individuals have to be tested – at a cost of hundreds of thousands of dollars.  Most parents don’t have the skill to conduct this kind of a search, nor do they have the financial resources to do this one thing that might save the life of their child. Many patients never find a match.
   Mr. Shor reported that, for Meir, he was successful in raising hundreds of thousands of dollars to test between 25,000 and 30,000 people.  That’s how many it took to find a single donor match.   Unfortunately, one week before Meir was scheduled to receive his transplant, the donor backed out.  Subsequently, Meir relapsed.  Once a patient relapses, the chance of survival is very, very slim. So, although several months later, Meir did   receive a bone marrow transplant from another donor, it was too late.  Meir passed away at the age of 17 years.  “The pain of his passing is with me every day, said Shor”.
   This is one of the reasons why, in 1991, Mr. Shor established the National Children’s Leukemia Foundation (NCLF): To prevent other parents and children from experiencing this same tragedy.  Promoting collection and storage of umbilical cord blood, as an alternative to seeking bone marrow donation from an adult donor, is one giant step toward achieving this goal. Cord blood contains the same lifesaving cells found in adult bone marrow.  It can be collected at birth - every birth - through a simple and pain-free procedure, and it is a less costly option than testing thousands of potential adult donors every time a transplant is needed. Furthermore, cord blood, which can be stored forever, is a perfect match for the baby, and can also be potentially used by another family member or non-related person.
“If I had been given the option of storing Meir’s cord blood when he was born, perhaps, Meir would still be alive today, stated Shor.”
   Each year, thousands of children in the United States are diagnosed with cancer or leukemia, and 1 in every 4 children will die within 5 years of diagnosis. Cancer is the 2nd leading cause of death among children 15 years of age and younger.  If every woman giving birth this year in the United States decided to bank cord blood, 4 million lives could potentially be saved.
           The NCLF has recently signed a contract with one of the largest cord blood banks in the United States.  This will enable the NCLF to discount the cost of cord blood collection and storage by a minimum of 30%, making it substantially more affordable. But that is not enough to make cord blood collection possible for the majority of families in this country or this state.  Legislation and government support are necessary to mandate education and create affordability.  
           In 2007, New York public health law was amended to establish a public and private cord blood banking program that would promote public awareness of the potential benefits of cord blood banking, promote research into the uses of cord blood, and facilitate pre-delivery arrangements for cord blood banking. The program is also charged with providing educational materials and brochures about cord blood options.  This is where the current legislation ends.  It has no teeth and it has no incentives.  Mr. Shor concluded his testimony with the following recommendations:
           First, enact legislation that would require every obstetrician and nurse-midwife to provide their patients with information about cord blood banking and storage.  As with HIPPA regulations, the patient would be required to sign a document stating that she had read the material and understood that she had the option to store her cord blood at birth for personal or public use.  

Second, enact legislation that would mandate funding for cord  blood collection for those who are economically disadvantaged, with a special focus on minorities , those of mixed ethnic background and other groups under-represented in cord blood and bone marrow donor pools.  Together, these two steps would dramatically increase the availability of lifesaving transplant donors without being dependent on expensive, and frequently unsuccessful, searches for live donors.
"Unfortunately, my story did not have a happy ending.  I cannot begin to tell you how terrible it is to lose a child.  It is a nightmare that words can never express, stated Shor."
Throughout the past decade, Mr. Shor and NCLF have worked tirelessly to help save the lives of thousands of children and adults suffering from cancer, leukemia and other blood disorders. They have had miracles along the way of children surviving and growing into healthy adults. These people are living proof that cord blood can save lives.

For more information about the National Children's Leukemia Foundation and cord blood donation visit: http://www.leukemiafoundation.org/