Public Awareness of Cord Blood Opportunities Lagging

The Arizona Republic, August 30, 2009

In an article entitled, "Lack of patient access limits promising cell therapy", a number of examples are cited in which a simple lack of public awareness about umbilical cord blood is the only thing standing between many patients and adult stem cell therapy.

Such awareness begins with the birth of a child, and whether or not the parents are even informed of their options for storing the child's umbilical cord blood. Private cord blood banks charge a fee that can be as high as several thousand dollars, while public cord blood banks offer free storage. According to recent surveys, however, nine out of ten parents choose neither option, which means that the umbilical cords - along with all the highly potent adult stem cells that are contained within the cords - are discarded as medical waste. Even when a conscious choice is made to bank umbilical cord blood, many adult patients in hospitals around the nation who could benefit from the cord-blood-derived adult stem cells are unaware that such a possibility exists.

Known to be an extremely rich source of highly potent adult stem cells, umbilical cord blood has a long and carefully recorded history as it has been used for a wide variety of clinical applications for decades, safely and effectively. Additionally, such uses have been routinely reported in the medical literature for more than half a century, predating World War II, and also predating any clear scientific understanding of a human stem cell. With the more recent development of the modern concept of a stem cell, umbilical cord and placental blood are now recognized as excellent sources of adult stem cells that can be used in the treatment of a broad range of diseases and injuries. Furthermore, when one considers the number of births that occur daily, throughout the world, umbilical cord blood represents a virtually limitless supply of versatile adult stem cells which otherwise would simply be discarded as waste. Unfortunately, most of the time, this is exactly what happens.

In 2003, Ryan and Jenny Levine chose not to bank the cord blood of their newly born daughter, deciding that the cost was too high. When another daughter was born in 2006, however, they decided to bank her cord blood, paying the $2,000 fee for a private banking facility in Tucson. When the second daughter was diagnosed a year later with cerebral palsy, she was able to receive stem cell therapy from her own cord blood stem cells.

As an infant the child would only reach for her bottle and toys with her left hand, while her right hand remained clenched to her chest in a fist. Likewise, instead of crawling, the child could only scoot along the floor, with her right leg dragging behind her. Her cerebral palsy was suspected of being caused by an in-utero stroke, which could have left the child crippled for life. Instead, when the child was treated with her own adult stem cells derived from her own umbilical cord blood, she began improving within days. Within two weeks, the stiffness on her right side that had been evident since birth was no longer detectable. She was reinfused a second time with her own stem cells in May of 2008. Today, she is able to catch a ball with both hands, and she uses all four limbs to ride a tricycle. The autologous (in which the donor and recipient are the same person) adult stem cell therapy was performed as part of an FDA-approved clinical trial conducted at Duke University in North Carolina. According to the child's mother, Jenny, "I tell anyone and everyone who is expecting a child that this is something that they need to at least consider."

Similarly, when Al Copeland of Phoenix was suffering from leukemia in 2007, he faced certain death within days after the bone marrow transplant that he had been awaiting fell through. Although he had never heard of cord-blood-derived adult stem cells, his physicians turned to a public cord blood bank in order to obtain the regenerative cells that saved his life. According to his physician, Dr. Jeff Schriber, who is also medical director of the Banner's Blood and Marrow Transplant Program, "He didn't have much time. Fortunately, we were able to get the cord blood quickly." Now that Mr. Copeland has been cancer-free for 18 months, he is a regular, voluntary visitor at Banner's oncology unit, where he visits and encourages transplant patients, offering a sympathetic ear to their fears and concerns. As Mr. Copeland puts it, "If a poor kid from south Texas can do this, so can you. It's going to be hard. It's going to be a struggle. But you can pull it off, man. You can." As 57-year-old Graig Stones listens attentively, Mr. Copeland explains that the stem cells saved his life, adding, "It made me realize there's a lot more to living than just getting up in the morning, putting on your shoes and socks and going to work each day."

Adult stem cells from umbilical cord blood have already been used to treat more than 70 illnesses over the past two decades, though most people are unaware of such facts. According to the National Marrow Donor Program, the number of units stored in their public network of cord-blood banks, which is now at 150,000, has more than tripled over the past five years, although this represents only 3% of the 4 million births that occur annually in the United States.

In addition to a severe lack of public education on the topic, experts cite two main obstacles that limit the availability of cord-blood stem cells, namely, cost, and an inadequate number of collection sites. The private Cord Blood Registry, based in San Bruno, California, for example, charges a $2,000 collection fee in addition to an annual $125 storage fee, though this guarantees the customer direct and exclusive access to his or her individual adult stem cells throughout the future, whenever necessary. Public cord blood banks, by contrast, allow neither direct nor exclusive accessibility to one's donated cord blood stem cells, though donation is free, and the stem cells are made available to anyone in the general public who may need adult stem cell treatment. At the time of this writing there are currently only 19 public cord blood banks throughout the U.S., most of which have agreements with hospitals on the east and west coasts but nowhere in between; consequently, availability of their services is virtually nonexistent in other parts of the country. Additionally, the cumbersome amount of paperwork that is required for donation to a public bank is often a strong disincentive for many parents. Among other things, expectant mothers must submit a complete medical history prior to the third trimester of pregnancy and make their own arrangements for mailing the cord blood to the storage facility immediately after birth. Clearly, a donation process such as this would be more efficacious if it were simplified. According to Dr. Jordan Perlow, "Every day I have patients who say, if there's an easy way I could donate, I'd love to do it," but an easy way does not yet exist. Although in recent years the U.S. federal government has initiated programs to increase public awareness of cord blood banking, in actuality the accessibility of such banking services still lags behind expectations. Since only 17 states have passed legislation requiring expectant mothers to be informed of cord blood preservation options, most new parents are still unaware that such possibilities even exist.

Advocates of public cord blood banking point out that the services have already saved numerous lives, even though the system is far from perfect. The highly potent mesenchymal stem cells that are found in cord blood are "immune privileged", meaning that they do not require an identical matching to the recipient, as bone marrow does, and therefore even one donated cord blood unit can potentially treat a large number of people, for a wide variety of illnesses and injuries.

In 2008, the National Marrow Donor Program, a Minnesota-based non-profit organization that handles requests for all publicly available cord blood, provided cord blood units for the treatment of nearly 900 people, signifying a 40% increase over 2007. Still, public cord blood banking remains significantly less popular than private banking, despite the difference in cost. New business models have been proposed for the public banking systems, which have set a goal of doubling their number of units, to 300,000, by 2015. Because the public banks bear the entire cost of the services, however, the question of funding is a serious one. By contrast, the Cord Blood Registry, which is the oldest and largest private cord blood bank in the world, already has over 270,000 cord blood samples in its inventory, which is 80% more than the number of samples in the "Be the Match" public-donor network. According to Tom Moore, CEO of the Cord Blood Registry, there has been a consistent 30% annual growth at the Registry over the past several years.

Nevertheless, private cord blood banks are increasingly attracting criticism for their exclusivity, as critics are increasingly encouraging a wider use of the more open services offered by public banking companies. In a policy statement issued in January of 2007 by the American Academy of Pediatrics, for example, it was estimated that the odds of any particular child actually needing to be treated with his or her own cord blood ranged from 1 in 1,000 to 1 in 200,000. There are therefore many physicians who agree with the Academy in urging greater use of public banks over private banks, since it is only the units stored in public banks which are made available to any patient anywhere who may be in need of adult stem cell treatment.

Umbilical cord blood has been documented in the peer-reviewed medical literature for its broad range of clinical therapeutic applications for over half a century, long before the concept of a stem cell became a topic of general interest. Today, a number of clinical trials are being conducted in which cord-blood-derived stem cells are being studied as a treatment for a wide variety of diseases and injuries, as these highly versatile adult stem cells are proving to hold greater, more concrete and more tangible therapeutic value than embryonic or iPS (induced pluripotent stem) cells, both of which are still in the experimental stages.

Unfortunately, neither the popular media nor, therefore, the general public, seem to be aware of such facts.