Title21 Software is passionate about supporting the overall goals of cord blood facilities and cellular therapy labs as well as helping to spread awareness of cord blood’s life-saving capabilities. In honor of National Cord Blood Awareness Month, we sat down for an interview with Sally Brien Holper, President of the Joanne Pang Foundation, an organization who works to increase the number of umbilical cord units available for life saving transplants.
Title21 Software: What is the mission of the Joanne Pang Foundation?
Sally Brien Holper: Like many worthwhile charities, our organization was founded by a parent who lost a child to cancer. Joanne Pang was a nine-year-old girl of Chinese-American descent who bravely battled leukemia for 20 months, succumbing when no cure could be found. Her grieving father, Joe Pang, worked through his sorrow by establishing a foundation in his daughter’s memory, devoting his energy to an effort that would help other families avoid the terrible pain he and his family had experienced. Had Joanne been able to find a cord blood match while in remission, she might be alive today. Joe was determined to launch a public banking program for cord blood in California and address the shortage of units available for cancer patients, particularly those of ethnic minorities or mixed race for whom the chances of finding a match are especially dim. Established in 2004, the Joanne Pang Foundation is a 501(c)(3) charitable organization passionately committed to increasing the number of cord blood units in Be The Match Registry.
Title21 Software: What are some of the accomplishments of the Joanne Pang Foundation and breakthroughs you have seen so far?
Sally Brien Holper: Seven out of ten people will have to look outside of their family for a match when needing to treat leukemia, lymphoma and many other life threatening diseases. Those patients and their doctors rely on the national registry (called Be The Match) to find an unrelated bone marrow donor or cord blood unit. Cord blood is already being used in therapy regimens for thousands of patients. There is a documented shortage of cord blood units available for ethnic minorities or those of mixed race. That is why collecting units from the very diverse population of California is critical and will improve the medical outcomes for many awaiting a cure. In partnership with MD Anderson Cord Blood Bank in Houston Texas, the Joanne Pang Foundation established the Cord Blood for Life cord blood collection program in January 2011, the only program available to eligible donors in the state of California. Since that time, the foundation has made cord blood donation available to 350 pregnant women at 58 hospitals throughout the state. With the documented shortage of ethnically diverse cord blood units available in Be The Match national registry, the JPF’s success in collecting cord blood units in California is extremely important. It is with great pride that the JPF continues to build the national inventory of life-saving cord blood units, with very low overhead expenses. A passionate group of board members has worked tirelessly, mostly as volunteers, to establish the Cord Blood for Life program. In June 2012, Helen Vydra Roy, the JPF Chief Operating Officer, received the KPIX Jefferson Award for Community Service. To learn more about that accomplishment, click here.
Title21 Software: What do you think is necessary to increase the overall awareness of cord blood banking?
Sally Brien Holper: Education and funding are the two necessary components for the future success of public cord blood banking. The vast majority of cord blood stem cells are discarded as biological waste. The goal of the JPF program is to capture these life-saving stem cells and bank them for future use. To accomplish this mission the JPF educates expecting parents about the public banking option and facilitate the donation process by obtaining required medical histories and consents, meeting with doctors and hospital staff, as well as making arrangements for shipping the cord blood unit. Since the window of opportunity for capturing the cord blood unit is only six weeks, a donor mom must be aware of the opportunity to donate. Since cord blood donation is offered at no charge to the pregnant mom, the cord blood banks, private foundations and public funding offset the cost of the collection, processing and storage of a cord blood unit which is estimated at $2500. As more states establish cord blood collection programs through the legislative process, the more funding will be available. The key to the success of public banking will be the collaboration of the public and private sectors.
Title21 Software: What are some of the common misconceptions about banking cord blood in a public bank?
Sally Brien Holper: Cord blood banking is the process whereby parents choose to save their baby’s cord blood at the time of birth to be processed and stored and include public or private. The confusion usually occurs around the difference between the two processes. Parents may choose cord blood donation in which case the cord blood is collected and donated to a public bank. The cord blood may be used for research or placed in Be The Match Registry for use by a patient seeking a stem cell match for a cure of a life threatening disease. Since publically banked cord blood has been used to treat over 70 blood diseases since 1988, most medical organizations including the American Association for Pediatrics recommend public banking when possible. Private banking is an option to parents who wish to pay a fee to store their baby’s cord blood for a future use which in most cases is extremely remote. In most cases, private banking is important for use in a family with a genetic disorder whereby the cord blood would be used for a sibling. If a patient is diagnosed with a life threatening disease, a transplant physician would not utilize the cord blood from that same patient for fear that the disease would reoccur.
Title21 Software: What are some of the largest obstacles public cord blood banking faces today and do you see that changing over the next ten years?
Sally Brien Holper: The largest obstacle for public cord blood banking is the lack of program availability to all women who want to donate their cord blood. As the public cord blood banks improve and expand the collection process utilizing modern technology to create standardized and streamlined processes, more women across the US will have the opportunity to donate their life-saving cord blood. The use of a paperless system for cord blood collections similar to the product that Title 21 produces will be very important for the expansion of collections to women across the US. Additionally, as HRSA, the federal program that oversees the cord blood collections continues to fund demonstration projects to reach more women, the units needed in the National Cord Blood Inventory will be available to patients seeking a cure. Unlocking the potential of cord blood stem cells has been at the core of research projects in the world and has grown exponentially over the last ten to twenty years with possible cures for genetic disorders, spinal cord injuries, Parkinson’s disease and diabetes just to name a few. As the research produces results, corporations will create therapy solutions for patients with these diseases. Discovering the cures and funding for these therapies will continue to move forward in the area of cord blood stem cells.
Title21 Software: In addition to financial donations and donating cord blood, how can men and women help the cause of the Joanne Pang Foundation?
Sally Brien Holper: The JPF board of directors has led with the philosophy that success is rooted in collaboration and partnership with the public and private sector for the cause of public cord blood banking. Currently, the JPF receives most of its funding through donations from individuals, grant awards and corporate gift giving. Additionally, the success of the Cord Blood for Life Program has been collaboration with MD Anderson Cord Blood Bank. More importantly for the future sustainability of the program, the JPF will happily work with corporate partners, community groups, and philanthropic organizations to save lives. The volunteers and board members work in a spirit of community and friendship for a common purpose. Board and staff members are available for speaking engagements to educate community organizations about the importance of public cord blood donation.
Title21 Software: What steps can be taken by doctors, nurses, expectant parents, and/or hospitals to ensure the proper collection of cord blood as well as the viability of the cord blood unit collected?
Sally Brien Holper: As part of the Cord Blood for Life collection program, the JPF staff facilitates the online cord blood collection training of obstetric physicians and practitioners which is a federal requirement for public banking. Physicians participating in public banking must be certified annually. To date, the JPF has worked with over 200 OB physicians and practitioners to successfully collect cord blood at 58 hospitals in the state of California. Targeting large OB practices, the JPF arranges onsite training sessions as well revisiting physicians and nurses for feedback on completed collections. Cooperation by staff and California hospitals has been a key factor to the success of the program and the JPF is grateful for the dedication by doctors and nurses across the state.
