Private Cord Blood Banking: Worth the Cost?

(NOTE: Read the full article Transplant Doctors Feel Private U-Cord Blood Banking An Expensive, Rarely Used Option – Survey)

Background:

We asked Christine McMurry, director of corporate communications for Cord Blood Registry, a private cord blood banking firm, to comment on the survey results. We also asked the study’s senior author, Steven Joffe, M.D., of the Dana-Farber Institute, to respond to Ms. McMurry’s comments. Although their e-mailed comments are summarized above, we thought readers would find it useful to read them verbatim here. The material has been edited slightly for continuity, style, and space requirements.

McMurry: [The survey] is more than five years old. The survey was undertaken in 2004, and most of the advances in regenerative medicine have occurred within the last two years. [Editor's Note: Ms. McMurry cited three earlier studies to substantiate her argument, including a 1997 study in Obstetrics and Gynecology, and two 2005 studies in Blood.]

Joffe: True, the data were collected almost five years ago. I suspect a few additional autologous transplants using privately banked cord blood have been done since then.  (Recall that allogeneic sibling transplants are not what private banks market their services for, are generally superfluous because the sibling is generally available to provide stem cells if necessary, and are virtually all done when there is no sick child or risk factor in the family.)

[However,] the opinions of these physicians [who were surveyed] are not out of date. The American Society of Blood and Marrow Transplantation (ASBMT) published recommendations last year that are consistent with what our respondents said. The studies she references do not, in my view, constitute advances in regenerative medicine. At best, they are interesting early stage studies. None of these have been validated clinically.

McMurry: It surveys only hemacologists and oncologists (end-stage users of cord blood) and includes none of the physician specialties (neurologists, endocrinologists, ENTs, etc.) who are actively using cord blood as a first-stage use for conditions such as brain injury, hearing loss, diabetes, etc.

Joffe: Based on the references [Ms. McMurry] provides, it substantially overstates the facts to describe physicians as actively using cord blood. These are early-phase trials.  Given that the [American Medical Association] AMA, the American Academy of Pediatrics [AAP], and the [American Society for Blood and Marrow Transplantation] ASBMT all recommend against [private] banking, it seems likely that any contemporary survey of knowledgeable physicians would give the same results.

McMurry: Regenerative medicine requires the use of one’s own (autologous) stem cells.

Joffe: Correct, but regenerative medicine using cord blood-derived stem cells is currently unvalidated. Furthermore, it is no more (or less) speculative to claim that induced pluripotent stem [iPS] cells may someday serve as a stem cell source for regenerative medicine, or that other non-stem-cell-based methods to treat these diseases will be developed.

McMurry: Medical guidelines have progressed in the last five years. ACOG (American College of Obstetricians & Gynecologists) guidelines released last year point to cord blood as having distinct benefits over other sources for traditional transplant use.

Joffe: The ASBMT, AAP and AMA guidelines were all released in 2007 or 2008. The new ACOG guidelines take a neutral stance on private banking, and point to advantages of cord blood for allogeneic, not autologous, use.  The advantages cited by ACOG argue strongly for expansion of public, not private, cord blood banks.

McMurry: Medicine is changing. As the population expands that has access to their own stem cells (or those of a sibling), transplanters will be using privately banked cord blood more often.

Joffe: We do not typically need previously collected cord blood cells from siblings, as it is possible to safely harvest stem cells from the siblings if and when they are needed. While previously collected cord blood cells may be used in situations where autologous transplant is indicated (as discussed below), it is unlikely that physicians will begin to prefer privately banked autologous cord blood in situations where allogeneic transplant is the treatment of choice. This is because, in such situations, we are usually trying either to treat a genetic disease (which would be in the cord blood cells also) or to treat blood cancers for which a graft-versus-leukemia effect (which requires allogeneic cells) is desired.

McMurry: Autologous use is appropriate for many cancers.

Joffe: In pediatrics, autologous use is appropriate for just a few cancers: most importantly, neuroblastoma and some lymphomas, but also certain brain tumors and recurrent germ-cell tumors, recurrent Wilms tumor and very rarely retinoblastoma. It is not appropriate for leukemias, which are the major cancer-related reason for transplant.

 McMurry: Autologous cord blood is better than autologous bone marrow collected during remission.

 Joffe: This seems probable, but the situations in which autologous transplants are likely to be necessary are rare, as discussed above. Setting aside the hypothetical of regenerative medicine, this is the major contemporary reason to consider banking. The question is, given the low likelihood that a child will develop an indication for transplant, is it worth the money, especially for a family that has to make hard choices about how it spends its money? I believe that the private use of funds is ultimately a private decision, but should be based on realistic understanding of the likelihood that the cord blood will be used, and on what uses are plausible based on current technology versus what uses are speculative. It should also be based on consideration of what other uses that money might be put to including such things as establishing a college fund or buying a safer car. Those of us who must make choices about how we spend our money must consider, given the odds, which use of the funds is ultimately more beneficial for our children.

McMurry: Considering that the cause of most cancers is unknown and that the science of stem cell therapy is expanding rapidly, it is difficult to accurately calculate the odds that a family will use the cord blood or benefit from new treatments. However, according to medical research, the odds that a child will someday need to use his or her own newborn stem cells for current treatments are estimated at 1 in 400. Odds that the newborn or a family member may benefit from banked cord blood are estimated at 1 in 200. These odds do not include the emerging and potential use of newborn stem cells to treat heart disease, diabetes, Parkinson’s, and spinal cord injury. The continued progress in potential medical uses of cord blood would greatly increase the likelihood of use by your baby throughout his or her life. Based on current data, there is no “expiration date” for newborn stem cells.

McMurry: Considering that the cause of most cancers is unknown and that the science of stem cell therapy is expanding rapidly, it is difficult to accurately calculate the odds that a family will use the cord blood or benefit from new treatments. However, according to medical research, the odds that a child will someday need to use his or her own newborn stem cells for current treatments are estimated at 1 in 400. Odds that the newborn or a family member may benefit from banked cord blood are estimated at 1 in 200. These odds do not include the emerging and potential use of newborn stem cells to treat heart disease, diabetes, Parkinson’s, and spinal cord injury. The continued progress in potential medical uses of cord blood would greatly increase the likelihood of use by your baby throughout his or her life. Based on current data, there is no “expiration date” for newborn stem cells.

Joffe: I am uncomfortable with these hypotheticals. Most helpful to parents and physicians would be straightforward descriptive data from the cord blood banks on the proportions of banked units that have been used for autologous transplant after five years, 10 years, 15 years, etc.  There are too many “what ifs” to base decisions on what treatments might be appropriate for today’s children 75 years from now. Assumptions that technologies based on cord blood stem cells will advance, but that other technologies that might make cord-blood based interventions unnecessary will remain static, are not appropriate.

            Contact: http://www.dana-farber.org

            Contact: http://www.cordblood.com

            Contact: Christine McMurry, cmcmurry@cordblood.com

            Contact: Steven Joffe, Steven_Joffe@dfci.harvard.edu