First Annual Report from the CBA President:
Advocacy and Market Expansion Are Top Priorities
At the CBA Board of Directors annual meeting in June in San Francisco, President Joanne Kurtzberg provided an update on the first-year accomplishments of the association.
“It’s been an amazingly busy and productive launch,” she said. “Perhaps most important, we’re demonstrating that the diverse members and stakeholders of the cord blood community can work together for their mutual benefit and for the health of the constituents we serve.”
Many of the accomplishments were presented in an open session for those attending the International Cord Blood Symposium. A list of the accomplishments of the CBA over the past year prepared by President Kurtzberg is presented below.
THE BASICS – an aggressive, successful launch
- The Cord Blood Association was established as a tax-exempt 501(c)6 nonprofit association, with a 501(c)3 subsidiary foundation.
- A Board of Directors was appointed, officers elected and a Strategic Plan developed.
- The board’s Executive Committee has met every second week throughout the year to implement that Strategic Plan.
- Committees and task forces were organized – one for each of the association’s priorities: advocacy, market expansion, quality products & services, education, and research & development.
ADVOCACY – an effective voice for the cord blood industry in public policy, legislation, regulation and delivery systems
- CBA membership, as of June 2016, includes 22 leading cord blood banks on five continents and 11 Industry Partners. In the past 12 months, the CBA has emerged as a strong, international, unified voice for the cord blood industry.
- A website was launched and is on track to be a valuable source of cord blood banking information.
- The CBA Government and Public Affairs Committee is addressing legislation and regulation on an international stage and is working toward global harmonization.
- The CBA Board of Directors approved a series of 32 policy statements that put the association on the record in important areas such as quality and safety, research and development, legislation and regulation, market expansion and public education. The statements also provide a framework for future policy positions.
- CBA, together with the National Marrow Donor Program, led a coalition that successfully achieved reauthorization of the Stem Cell Act in the United States, providing funding for the C.W. Bill Young Program and the National Cord Blood Inventory for another five years.
- The association’s representatives met with numerous U.S. Senators and Representatives and testified in Congress for the successful reauthorization and funding of the National Cord Blood Inventory.
- CBA and industry leaders met with the FDA about improving the process of cord blood bank licensure and optimizing cord blood bank regulations.
- The association retained one of the most prestigious government relations firms for representation in legislative and regulatory initiatives critical to banking of cord blood and birthing tissues.
- The association co-produced or collaborated in six major conferences for health care professionals, presenting research advances in banking and cellular therapies. These included a full-day session on “Cord Blood and Cord Tissues in Regenerative Medicine” at the International Society for Cellular Therapies (ISCT) pre-conference days at the 2015 and 2016 annual meetings, sessions at the World Stem Cell Summit, sessions at the Perinatal Stem Cell Conference, and collaboration with AABB on the International Cord Blood Symposium meetings for 2015 and 2016.
MARKET EXPANSION – broadened consumer access to banking services and cellular therapies
- The CBA Market Expansion Committee is identifying opportunities for cord blood banking representatives to present lectures, submit abstracts, staff exhibits and otherwise participate in meetings and conferences of allied health care professional organizations.
- The committee has gathered information on expectant parent and patient advocacy organizations for interaction and to provide information about the value of cord blood.
- The committee completed a slide program for CBA presentations to health care provider organizations.
- A webinar addressing future therapeutic indications for cord blood was co-produced with FACT.
- Plans are under way for the creation of a website blog, dedicated to market expansion topics and discussion.
- A leadership summit with industry partners is scheduled for this fall to explore collaborations that expand uses of and demand for cord blood and related tissues.
QUALITY – accreditation for banks and standards for products and services
- CBA provided input for the 6th edition of FACT Cord Blood Standards, published on July 1 and scheduled to take effect in the fall.
- Association leaders collaborated with other cell therapy and health care organizations through the Bipartisan Policy Commission to seek expedited regulatory approval of novel therapies without sacrificing quality.
- The CBA Quality Standards Committee is developing plans to study, compare and evaluate the current systems of standard-setting and accreditation for cord blood banking, and seek harmonization of the standards and accreditation.
- The committee is determining whether CBA can and should have a role in training or mentoring for cord blood banks that are seeking to meet accreditation standards, or in providing consulting on quality improvement to individual cord blood banks.
EDUCATION – aware, informed and empowered parents, donors, health care providers and general public
- Authoritative and balanced information for expectant parents was developed and published on the CBA website, making it a primary place on the internet for information about all banking options – public, family, and directed donation.
- The Board of Directors approved a plan for public education developed by the CBA Public Education Committee.
- The committee created protocol for managing consumer media inquiries about cord blood.
- State-level health agencies were informed about the cord blood education information posted on the CBA website.
RESEARCH AND DEVELOPMENT – advancement and rapid adoption of novel technologies and therapies
- CBA collaborated with AABB on the annual International Cord Blood Symposium, and has had a major presence at other important scientific conferences such as the International Society for Cellular Therapy annual meetings, the World Stem Cell Summit, and the annual Perinatal Stem Cell Conference.
- The CBA Scientific Affairs Committee is evaluating the feasibility of tracking clinical studies that use cord blood and birthing tissues in regenerative medicine and other cellular therapies.
THE YEAR AHEAD – over the coming year, the CBA is committed to:
- grow its membership
- expand its commitment to global harmonization
- extend membership to not-for-profit foundations (thanks to the Cure CP Foundation, Parent’s Guide to Cord Blood Foundation and Save the Cord Foundation for becoming founding members in this category)
- execute its new partnership with Stem Cells Translational Medicine with journal sections on advances in cord blood banking, technologies and therapies
- continue to work with lawmakers internationally and with the U.S. Congress to follow and inform legislation that affects the regulatory pathway of cellular and tissue-derived therapies
- increase the content and pace of communications on the CBA website
These are a few of the many CBA goals for the coming year.
The best way to influence the future is to create it. The Cord Blood Association is all about creating the future for cord blood.
Joanne Kurtzberg, MD