They have been referred to as "miracle cells" and "the cure that lies within." Stem cells contained in a newborn's umbilical cord blood are increasingly being used in regenerative and transplant medicine to improve and save lives.

Cord blood stem cells have unique characteristics that distinguish them from other types of stem cells found in the body. Today, they are used to treat about 70 diseases and are being studied for use in conditions and diseases like diabetes, heart disease, and neurological damage that affect millions of Americans.

 

Stem cells from cord blood can be collected easily without risk to the mother or newborn and preserved indefinitely. However, there's only one opportunity to do so—immediately following birth. If you could make the decision, would you preserve your cord blood stem cells?

Unfortunately, the vast majority of expectant parents are not presented with fair and balanced information about cord blood preservation. The result: in 9 out of 10 births in this country the cord blood—and the stem cells within—are disposed of as medical waste. That's nearly 3.8 million umbilical cords!

Conflicting Recommendations
In 2004, the Institute of Medicine issued a comprehensive report to Congress on cord blood banking. The institute, part of the National Academy of Sciences, is a not-for-profit organization comprised of scientific experts whose purpose is to provide advice and guidance on national medical and health issues. Its recommendations have prompted federal legislation as well as legislation in 12 states that support informed choice.

The report contained clear recommendations that physicians and other pre-natal care providers should provide all expectant parents with fair and balanced education on cord blood preservation prior to labor and delivery so that they can make an informed choice about their options: preserve the cord blood stem cells for future family use, donate the cells for public use or research, or dispose of the cord blood.

Earlier this year, the American Academy of Pediatrics issued policy guidelines on cord blood banking that stand in stark contrast to the Institute of Medicine's recommendations.

While the academy's policy strongly supports the therapeutic value of cord blood stem cells, it encourages parents to consider public donation and discourages family banking except in cases where a family member has a known medical condition that could potentially benefit from stem cell transplantation.

This prescriptive policy is flawed.

First, the revised American Academy of Pediatrics policy statement is neither fair nor balanced. It does not appropriately recognize the fundamental tenet of informed choice endorsed by the Institute of Medicine.

Second, the American Academy of Pediatrics policy includes inaccurate and misleading statements. For example, the policy states that there is no accurate research regarding the benefit of using autologous (one's own) or related allogeneic (a family member's) stem cells for therapy, which is simply untrue. Data from a study published in the New England Journal of Medicine demonstrated that cord blood stem cells from a genetically-related source (yourself or a family member), have been proven to increase patient survival and reduce the incidence of life-threatening transplant complications like graft-vs.-host disease.

Most importantly, the policy doesn't account for what happens everyday in the real world. Our health situation can change—sometimes unexpectedly.

Take the situation of Katie Teasley. Katie was born a perfectly normal and healthy child. Her parents chose to preserve her cord blood in a family bank because they believed in the potential of stem cell medicine and wanted to give their daughter and her sister every potential treatment option in the future. They figured they would never need the cord blood stem cells.

But they did. When Katie turned nine, she developed aplastic anemia, a life-threatening blood disorder. Her cord blood stem cells were used to treat her condition and save her life. Today she is disease-free and has a full-life ahead of her.

Where would Katie be today if her parents had followed the guidance of the Academy of Pediatrics?

Some would say the Teasleys took a risk in deciding to preserve Katie's cord blood stem cells in a family bank. In essence they did. They chose to risk spending money on something they might never need. However, that was a risk they were willing to take. In doing so, they avoided a different risk: not having a potential treatment option available when their daughter needed it most. This is what informed choice is all about.

The health policy related to cord blood banking is at a crossroads. We can either follow prescriptive guidance based on outdated science or we can be empowered with information to make our own health decisions.

Ultimately, the choice is yours.