Families with a Medical Need

Under these circumstances, there are 3 options to obtain financial assistance for cord blood banking:

1. The patient's medical insurance covers cord blood banking.
2. The family applies to the federal Related Donor Cord Blood Program.
3. The family applies to a charity program at a family cord blood bank.

The sections below describe each option.

If an older sibling currently needs a transplant, your medical insurance provider may cover the cost of collecting cord blood from the newborn.  Unfortunately this is not always the case, which is why the programs listed below were founded.  When one of the newborn's parents is seeking a transplant donor, insurance providers vary in whether they will cover cord blood banking.  This subject is complex and constantly changing, so you must contact your insurance provider.  The patient's hospital should have a social worker or other staff member who can assist in this process.

• Background
• Who is eligible?
• Qualifying diseases
  
• Participating Banks

Background:

Prior to 2005, the Children's Hospital of Oakland operated a Sibling Donor Cord Blood Program funded by a grant from the National Heart, Lung, and Blood Insititute (NHLBI).  The program offered free cord blood banking to families where a full sibling of the newborn had been diagnosed with a disease treated by stem cell transplantation.  Since 2005, when the NHLBI grant funding ran out, the program is now supported by the family cord blood bank ViaCord, under the name The Sibling Connection.  To date, several hundred families have been served through the CHORI/ViaCord program and over 150 cord blood transplants were performed for these families. 

Starting 1 Oct 2008, the U.S. Health Resources and Services Administration (HRSA) began funding a new federal program called the Related Donor Cord Blood Program.  This program was mandated by the Stem Cell Therapeutic and Research Act of 2005 (a combination of House of Representatives bill HR 2520 and Senate amendments, all of which can be read in the Congressional Record at thomas.loc.gov).

Information about the Related Donor Cord Blood Program is available at www.marrow.org/relatedcord

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Who is eligible?

The federal program provides free cord blood banking if a biological sibling of the new baby has been diagnosed with a disease for which a stem cell transplant is standard therapy, plus it will cover a biological parent who is enrolled in a treatment protocol that will accept a transplant of the child's cord blood.  The NMDP Office of Patient Advocacy, which is also funded by HRSA, is providing case managers to help families apply to this program.  They can be contacted by phone:  888-999-6743 or by Email patientinfo@nmdp.org.  Parents can also apply directly to a participating bank.

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Qualifying diseases

Basically, any disease for which cord blood transplants are a standard therapy will be covered.  See the section of this website on diseases treated by blood stem cells.  The federal program provides a list of diseases covered by the related donor program, but a rare disease which is not explicitly listed is not necessarily excluded.

Participating banks

The following cord blood banks are currently participating in the federal Related Donor Cord Blood Program (Jan 2009).  Among these 7 banks, 5 are public cord blood banks in the NMDP network, and 2 are family banks.

Carolinas Cord Blood Bank at Duke University Medical Center
(919) 668-1116

Cord Blood Registry (CBR)
(888) 932-6568

M.D. Anderson Cord Blood Bank
(866) 869-5111

Puget Sound Blood Center
(206) 292-1896

StemCyte International Cord Blood Center
(866) 783-6298

Texas Cord Blood Bank
(800) 292-5534

ViaCord
(866) 388-3950


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Besides the cord blood banks which participate in the federal program, there are additional family banks which offer charity programs to families with a case of medical need.  The non-profit public banks cannot afford to give parents free banking unless it is covered by a grant, whereas the for-profit family banks can use their profit margin to give back to the community. 

These programs vary in their acceptance criteria and may change at any time, so the burden is upon parents to make inquiries and compare their options.  Factors to consider are:

Consider whether you are at high risk of premature delivery.  Premature babies have much higher rates of cerebral palsy.  At present a clinical trial is treating children with their own cord blood to ameliorate the symptoms of cerebral palsy and other newborn brain injuries.  For this reason a family bank may provide free banking for a baby which was very premature or experienced serious complications at birth.

Consider whether you have good health insurance.  The public cord blood banks will charge your medical insurance over $25,000 for the release of a related donor cord blood collection.  A family bank may not charge at all for the release of the collection, or may only charge for annual storage fees of about $125.

As of May 2010, the following banks are operating charity programs.   Some banks have contributed a short description of their program, which is below this list:

• AlphaCord Outreach Program
  
• CBR - Designated Transplant Program
  
• FamilyCord - Immediate Need Transplant Program
  
• LifebankUSA
• ViaCord - The Sibling Connection
  
• Xytex - Cord Trust Program
  

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AlphaCord is pleased to announce its Outreach Program. Qualified recipients will receive free cord blood banking and storage for the first year.  AlphaCord wants to be able to help those who have a qualified medical need for the cord blood and documented financial needs. To learn more please contact AlphaCord 1-866-396-7283.

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Cord Blood Registry operates a Designated Transplant Program (DTP) 1-888-932-6568.  This community program allows families in need, regardless of their financial situation but who meet certain medical criteria, to avail themselves of genetically related stem cells, the choice preferred by transplant doctors.  There are currently over 1,000 patients in the DTP, with funding provided by CBR's family banking program.

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FamilyCord started the Immediate Need Transplant Program to offers their services free of charge to parents with a family member in immediate need of a cord blood transplant to treat a life-threatening disease.  Any expectant family with a mother, father or child that has been diagnosed with a disease presently treatable by cord blood stem cells qualifies for this program .  Please contact FamilyCord at 800-490-CORD (2673) to discuss your individual case with a cord blood educator.

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The Sibling Connection program is a unique partnership between ViaCord and Children's Hospital of Oakland Research Institute (CHORI).  Any expectant family with a child who has an established diagnosis of a disease that is currently treatable with cord blood may receive ViaCord's premier cord blood banking and five years of storage services at no cost. Your child's doctor will need to complete a medical referral form. If you would like more information please call the special number for this program, 1-866-861-8435.

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As a public service, Xytex Cord Blood Bank is pleased to provide its cord blood banking services and up to 10 years of storage, free of charge, to families with a child diagnosed with a disease in which standard treatment is cord blood stem cells.  Attached is a one page description of the program and a referral form.  For more information, call Xytex at 800-277-3210 and ask for the Cord Trust Program.

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