Cord Blood Education & Awareness Act
(Awaiting Re-introduction in the 112th Congress)
- Cord Blood is a rich and non-controversial source of stem cells for current and emerging therapies. Stem cells from umbilical cord blood have been used in more than 25,000 transplants worldwide during the last 20 years to treat a wide range of diseases in both adults and children. Because they have shown distinct benefits over other sources of adult stem cells (like bone marrow and peripheral blood), they are routinely chosen preferred by transplant physicians for treating many forms of cancer, blood disorders and immune diseases
- Cord blood stem cells are also showing promise in research for regenerative medicine. Because stem cells found in cord blood have the ability to differentiate into many cell types in the human body, they are demonstrating considerable potential for therapeutic use. Researchers have found that in addition to blood cell precursors, cord blood and cord tissue itself contain many different types of stem cells -- the building blocks of bones, the heart, liver, and nervous system. Clinical trials are currently underway to study use of a child’s own cord blood stem cells to treat type 1 diabetes, traumatic brain injury, cerebral palsy and hearing loss.
- The “Cord Blood Education and Awareness Act” will provide expectant mothers with straightforward, accurate, and easy to understand information about the value of their child’s umbilical cord blood stem cells. It will offer a government stamp of approval on all available cord blood banking options and will give expectant parents confidence in the information they are reviewing.
- Specifically, the legislation will require the Secretary of Health and Human Services to develop uniform and medically accurate information regarding cord blood banking options, medical data on the use and future potential of cord blood stem cells, the costs and availability of various banking or donation options and other pertinent information to help expectant parents make an informed choice for their child’s cord blood. The bill will also require information developed by the Secretary to be disseminated to pregnant women by maternal health care providers.
- The legislation will require Secretary of Health and Human Services to develop standards for written informed consent so that expectant women can expressly affirm a decision for their child’s cord blood stem cells. Lastly, the legislation provides for the development and administration of professional education materials for maternal healthcare providers and will also implement education grants for organizations that serve populations for whom decisions about cord blood stem cells are especially important.
- Despite rapid advances using a child’s own cord blood stem cells in regenerative therapies to repair damaged tissue due to injury or disease, most pregnant women today don’t learn about the ability to save their newborn’s cord blood. According to research published in the Journal of Reproductive Medicine, 3 out of every 4 pregnant women consider themselves only “minimally informed.”
- In 2005, The Institute of Medicine (IOM) submitted a report to Congress entitled “Establishing National Hematopoietic Stem Cell Bank Program,” and recommended that “donors must be provided with clear information about their options,” for cord blood and that “the information provided to a donor must include a balanced perspective on the different options for banking” cord blood. The IOM also recommended that “informed consent for the collection storage and use of cord blood should be obtained before labor and delivery, and after the adequate disclosure of information.”
- Options for expectant parents to consider concerning a child’s umbilical cord blood include: donation to a public cord blood bank, storage for individual or family use (for a fee) in a private cord blood bank, storage for family use (free of charge) via medical need-based program within a private cord blood bank or disposal as medical waste.
- The “Cord Blood Education and Awareness Act” is supported by the Coalition for Regenerative Stem Cell Medicine (CRSCM – www.crscm.org), a national coalition of healthcare organizations, researchers, professional associations and disease advocacy groups dedicated to raising awareness and lowering financial barriers of cord blood stem cells. CRSCM members include the Brain Injury Association of America, the Spinal Cord Injury Association, the Association of Nurse Practitioners in Women’s Health, the Childhood Leukemia Foundation, the Parent’s Guide to Cord Blood, several notable stem cells researchers throughout the world and a growing number of other individuals and organizations dedicated to ensuring that these valuable stem cells are never thrown away.
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