August 6, 2009
UMBILICAL CORD BLOOD BANKS-OTHER STATES' ACTIVITIES
By: John Kasprak, Senior Attorney
You asked for an update of OLR Report 2006-R-0135 that addresses other states' initiatives concerning umbilical cord blood.
Following the birth of a baby, the umbilical cord usually is discarded along with the placenta. But it is now known that umbilical cord blood is a rich source of stem cells. These are unspecialized blood cells that produce all other blood cells, including blood-clotting platelets and red and white blood cells. Like donated bone marrow, umbilical cord blood can be used to treat various genetic disorders that affect the blood and immune system, such as leukemia and certain cancers, and some inherited disorders of body chemistry.
Both private and public cord blood banks have developed in the last few years in response to the success of umbilical cord blood transplants in treating certain diseases. Private blood banking allows families to preserve their blood for their own use. For-profit private banks charge a fee to preserve a newborn's cord blood for possible use by the family later. Public banks, usually established by medical centers, accept donations for use by anyone in need.
In the past few years, an increasing number of states have passed legislation intended to help expectant parents, as well as their health care providers, become aware of their options for donating or banking their newborn's umbilical cord blood. To date, at least 22 states, including Connecticut, have enacted legislation focused on cord blood public awareness campaigns so that parents can make informed decisions about cord blood banking. This can involve development of brochures and other educational materials, both for expectant parents and health care providers. States are also continuing to explore creating public cord blood banks in their states as well as forming partnerships with existing banks.
Legislation passed this session (PA 09-232, Sec. 21) requires physicians and other health care providers who provide pregnancy-related care for women during their third trimester to provide the women with timely, relevant, and appropriate information about umbilical cord blood and cord blood banks. The information must be sufficient to allow women to make informed choices about banking or donating their child's cord blood.
PA 06-77 established an ad hoc committee to examine and evaluate the feasibility of (1) establishing a pubic umbilical cord blood bank for the purpose of collecting and storing umbilical cord blood and placental tissue donated by maternity patients, (2) entering into a multi-state public umbilical cord blood bank collaboration and (3) developing a public-private partnership with existing cord blood banks. Based on its information gathering, the committee agreed that the most advantageous approach for Connecticut was the public-private partnership between the state and a public cord blood bank that was willing to establish public collection operations within Connecticut to collect cord blood units for therapeutic and research use.
PA 07-252 (Sec. 77) required the Department of Public Health (DPH) commissioner, by October 1, 2007, to request information from one or more umbilical cord blood banks concerning the establishment of a public collection operation in the state to collect, transport, process, and store cord blood units from Connecticut residents for therapeutic and research purposes. The DPH commissioner had to submit a summary of the responses and any recommendations to the governor and the Public Health Committee by January 1, 2008. (This report is available from DPH or we can provide you with a copy.)
DPH, in its report, stated that there was interest in both the private and public sector blood banking communities concerning partnering with Connecticut in establishing a public bank. The department continued, “The most significant, unanswered question is the extent to which the State would need to provide start up or on-going financial support to ensure the success of this effort.”
As of January 2007, state health care professionals must inform a pregnant patient in her second trimester about her ability to family bank (preserve cord blood for just the family's use) or donate her newborn's cord blood. The Arizona Department of Health Services has developed a brochure on all options for expectant mothers, including the benefits of umbilical cord blood collection to the newborn, biological family, and non-related individuals.
California enacted AB 34 in 2008, which establishes a statewide cord blood collection program within its Department of Public Health. The department will contract with up to five blood banks to store cord blood, seek donations from patients and hospitals, educate the public, and train health professionals on how to retrieve and store the resource.
In 2008, Colorado passed HB 1372 creating the Adult Stem Cell Cure Fund, which will provide financial resources to public blood banks. The law also establishes a public awareness campaign to encourage new mothers to donate to these banks, which will become part of a national registry. Money for the fund comes from a voluntary income tax check-off.
Georgia legislation enacted in 2008 (“Saving the Cure Act”, SB 148) is also known as “Keone's Law,” named for an individual who was cured of sickle cell anemia through cord blood treatment. The law establishes the Newborn Umbilical Cord Blood Bank and creates a commission with a variety of tasks including developing a program to explain (1) the differences between public and private banking, (2) the medical processes involved in the collection and storage of postnatal tissue and fluid, (3)the current and potential future medical uses of stored postnatal tissue and fluid, (4) the benefits and risks involved in the banking of postnatal tissue and fluid; and (5) the availability and cost of storing postnatal tissue and fluid in public and private umbilical cord blood banks.
Beginning in 2009, all physicians and hospitals in the state must inform pregnant women, within 30 days from the beginning of the third trimester of pregnancy, of the full range of options for donation of postnatal tissue and fluids. (This mandate does not apply to a physician who objects to the transfusion or transplantation of blood based on bona fide religious beliefs.)
Legislation passed in 2007 (HB 642; PA 95-0073) requires the state's Department of Public Health to prepare and distribute to health and maternal care providers written materials containing standardized objective information about umbilical cord blood banking that is sufficient to allow a pregnant woman to make an informed decision about whether to participate in a public or private cord blood banking program.
HB 861 of the 2008 Session requires the Louisiana Department of Health and Hospitals to promote awareness of the potential benefits of cord blood banking. The department will develop an outreach campaign via written materials, brochures, the Internet, and public service announcements to promote cord blood banking awareness. Also, the legislation calls for educating medical professionals and establishing a toll free number for information on all cord blood banks serving the state. Implementation is dependent on funding.
Several bills passed in 2006 focused on creating a network of umbilical cord blood banks. Another act encouraged health care professionals, facilities, and agencies to provide educational materials on all cord blood options, developed by the state health department, to a pregnant woman before her third trimester. These materials were to include the differences between public and private cord blood banking.
In January 2008, the state passed cord blood legislation aimed at educating expectant families on all their cord blood preservation options, including family banking and public donation. The legislation includes a provision for the New Jersey Department of Health and Senior Services to create an educational brochure and directs prenatal health care providers to share it with expectant parents prior to labor and delivery, preferably in the first trimester.
In August 2007, New York established a public and private cord blood banking program to promote awareness of the potential benefits of both public and family cord blood banking, promote research into the uses of cord blood, and encourage pre-delivery arrangements for public or private banking of cord blood donations (SB 1265). The program is charged with providing educational materials and brochures on both cord blood options to the general public and potential donors through local health departments, health care practitioners, hospitals, clinics, and other organizations serving pregnant women.
North Carolina passed legislation in June 2009 that requires the state's Department of Health and Human Services to provide free education about cord blood stem cells and the options for preserving them to parents and physicians. The law also encourages physicians to make the information available to expectant parents early enough in the pregnancy so that they can make an informed decision about whether to participate in a public or private cord blood banking program.
Oklahoma's HB 3060, passed in 2008, directs the state Health Department to create a public cord blood bank, subject to public and private funding. The state health commissioner must investigate whether partnerships with existing public cord blood banks would be more cost effective. The legislation requires the health department, in collaboration with a private blood donor or private blood bank organization, to establish a program to educate maternity patients on cord blood banking. The program must give maternity patients sufficient information to make an informed decision on whether or not to participate in a public or private cord blood banking program.
Pennsylvania passed the “Umbilical Cord Blood Education and Donation Act” (HB 874) in April 2008. It encourages health care providers to educate expectant parents about their cord blood preservation options prior to the end of the second trimester so that they may make an informed choice between family banking, public donation, or free family banking in situations where there is an existing medical need within the family. The law also includes a provision directing the state Health Department to create an online brochure that health care providers can print and give to their patients.
A 2008 Rhode Island law provides that health care professionals must educate a pregnant patient after her first trimester about her ability to family bank or donate her newborn's cord blood. It also states that hospitals must facilitate cord blood collections. In addition, physicians must inform expectant parents about free cord blood collection and storage programs offered by family and sibling donor banks.
HB 709 of Texas' 2007 session requires the Texas Health and Human Services Commission to develop a brochure regarding public donation and family banking, including the free programs where there is an existing medical need. The brochure must include current and potential future uses and benefits of cord blood stem cells to a potential recipient of donated stem cells, such as a biological family member or a non-related individual; the medical process to collect cord blood, and any risks and associated costs with cord blood banking. The brochure must be provided by maternal healthcare professionals to pregnant women before the third trimester, or as soon as reasonably feasible.
In 2008, the Washington legislature enacted House Bill 2431, which encourages healthcare providers to better educate their patients about the value of cord blood stem cells and the options for preserving them. The law provides expectant parents with greater access to cord blood information prior to the third trimester of pregnancy to help them more
readily arrange for private cord stem cell storage or public donation as alternatives to discarding cord blood as medical waste. The new law also requires cord blood banks to have licenses, accreditations, and other authorizations required under federal and Washington law.