Newsletter - July 2013


July is Cord Blood Awareness Month

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Joanne Pang Foundation

Joanne Pang

Joanne Pang: April 18, 1993 - January 13, 2003

Diagnosed with acute myeloid leukemia in 2001, Joanne and her family fought a courageous two year battle against this disease. Had Joanne received a bone marrow or cord blood transplant early in her treatment, she most likely would have lived. Joanne's father, Dr. Joseph Pang, started the Joanne Pang Foundation to provide hope to families faced with a diagnosis of a blood disease. The Foundation launched Cord Blood for Life, a historic public cord blood donation program that is the only program accessible to all eligible donors throughout the state of California.

On January 19, 2011, the first donation to Cord Blood for Life was collected by the Joanne Pang Foundation from a South Asian donor at St. Luke's Hospital in San Francisco. This event received prominent coverage from KTVU Channel 2 news.

The Joanne Pang Foundation works in partnership with the MD Anderson Cord Blood Bank in Houston, Texas, and utilizes the "remote kit model" which is offered at no charge to the donating mother. Each kit provides the mother with supplies and instructions to facilitate cord blood donation. All cord blood units banked by MD Anderson are listed on the national Be The Match registry.

Since the inception of the program, the Joanne Pang Foundation has targeted large obstetric practices with ethnically diverse populations to educate physicians and childbirth practitioners about the importance of public cord blood donation. Since that time, word has spread across the state of California and we have consented over 300 women at 55 hospitals working with nearly 200 health care providers in California. Of the units we collected, 38% have been accepted for the Be The Match registry, far exceeding the national standard for the "remote kit model".

The outreach and education provided by the Joanne Pang Foundation has significantly increased participation in public cord blood donation among historically under-represented ethnic groups throughout California. Among the mothers we have consented, 42% are of Asian heritage and 38% are of mixed-race. Their donations will help ethnic minority patients searching for a life-saving match to have a chance for a cure.

The Joanne Pang Foundation always facilitates the donation process from start to finish. Trained staff work with donors to determine their eligibility to donate, and complete all the necessary paperwork required for donation. Our assistance enables the MD Anderson Cord Blood Bank to reach significant numbers of donors in California. Most importantly, women in California now have a choice about what to do with their baby's cord blood.

With a small dedicated staff supported by an engaged board of directors and passionate volunteers, the Joanne Pang Foundation has made a major contribution to the cord blood banking community. In June, 2012, Joanne Pang Foundation Chief Operating Officer, Helen Vydra Roy, received the KPIX Channel 5 Jeffers Award for Community Service for her untiring commitment to the Cord Blood for Life program.

The Joanne Pang Foundation Cord Blood for Life Program relies on funding from individuals, private foundations, and corporate matching grants. With the increase in the number of cord blood donations each day, we ask that you visit www.joannepang.org/support-us/ to make a contribution to save a life.

Joanne Pang Foundation

If you are a California resident and would like to donate your baby's cord blood, visit joannepang.org/donate/.
For more information about the Joanne Pang Foundation, watch A New Kite in the Sky: The Joanne Pang Story

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A Parent's Wild Ride To Cord Blood

Cara Paiuk and twin daughters

Cara Paiuk

I have worn many hats in my life but the one I take most seriously is my 'mommy beret'. The decisions I make on my children's behalf can impact their whole lives, and the responsibility of it all sometimes overwhelms me.

When I found out I was pregnant with my son a little over three years ago, I decided after much discussion and research to proceed with a midwife. I don't remember much from our first appointment other than we talked a lot about family history and that the office was suffocatingly warm. I also remember that among the many beautiful pictures of the children the practice had ushered into the world, there were pamphlets about cord blood banking. Scores of them. They were irresistibly attractive and looked important, so I picked up a few to bring home to read.

Since I have always devoured information about health conditions, I was surprised that these brochures listed diseases I had never heard of! It titillated me to learn about something new, but terrified me when I realized how little I knew about the dangers awaiting my unborn child the moment he left the warmth of my womb. These unpronounceable diseases were surely silent death sentences. I determined to learn more to protect my family.

My husband and I researched cord blood banking to the best of our ability. We didn't anticipate how complex the issue was, but early on we discovered two indisputable facts: that there is tremendous value to banking cord blood, and that private banking is not the only option. We learned that we could donate the cord blood to a public cord bank at no cost to us.

After much deliberation, we decided to donate our son's cord blood to the Carolinas Cord Blood Bank, which is affiliated with Duke University. Some of the world's most cutting edge stem cell research is taking place there and they made the donation process incredibly easy. They sent us a free mail-in kit to donate to their bank, and after our midwives completed a 20-minute online registration, we were good to go. I will never know whether our son's donation met the stringent FDA requirements to be entered into the National Marrow Donor Program (NMDP) registry called Be The Match, but I hope it did. And if not, then there's a good chance that his blood went to research.

Public banking was the best decision for our family at the time. But that was three years ago and things are different now. I was expecting twins this spring and realized their cord blood volume would be too small to meet public bank standards. Our only remaining options were private cord blood banking or disposing of the cord blood as medical waste. Since we knew from before that cord blood is valuable, we took a closer look at private cord blood banking and the efficacy of the public cord blood registry to decide what to do.

We found out that, since we are not racially or ethnically diverse, we would stand a good chance of finding a donor match in the public registry. We also discovered that our children's own cord blood could not be used for themselves for most diseases treatable by cord blood transplants and would only have a 25% chance of helping a sibling. (If the twins end up being identical they will be perfect matches for each other, but if either gets sick with an inherited condition then the other's cord blood will be assumed to contain the disease). This means that the chances of finding a transplant match are better with the public registry than with a family bank!

However, research is underway that could tip the balance of whether and where to donate. For one, researchers are working on ways to do more with less cord blood so that the smallest amount of baby cord blood could be used for transplants of full-grown adults one day. This could encourage parents to save their child's cord blood, because public banks throw out most of the cord blood donations they receive. Just as crucially, research is advancing on treating cerebral palsy, autism, diabetes, heart disease, and many other relatively common diseases with cord blood. Families that have their own cord blood in storage have raw material ready for these therapies. If successful, and I don't think this is an exaggeration, cord blood could become a modern miracle that saves untold lives and improves the quality of life for practically everyone.

In spite of all its potential, 95% of cord blood is simply thrown out. Sadly, we had to join this statistic. With public donation off the table this time around, and private banking beyond our financial reach, we regretfully disposed of our twins' cord blood. What I don't regret is the time and effort I spent educating myself. I feel satisfied that I made a conscious decision, acted responsibly on our children's behalf, and earned a star on my 'mommy beret'.

Cord Blood by the Numbers

Fact Number Source
Number cord blood units stored in US family banks > 1.15 million
(Dec. 2012)
PGCB
Number cord blood units stored in US public banks (both NMDP & non-NMDP) 205,772
(Dec. 2011)
WMDA
Number cord blood units needed in public banks to match
90% of adult US patients in most racial groups
1 million GAO p.6
Number cord blood units needed in public banks to match
90% of adult African American patients
> 10 million GAO p.6
Median cost of storing cord blood in a family bank, year 1 $1,975 PGCB
Median cost of storing cord blood in a family bank, year 20 $4,095 PGCB
Cost of processing cord blood unit for storage in a public bank $1,500 -
$2,500
Todd 2012
GAO p.13
Average federal reimbursement to public banks for each cord blood unit $1,110 GAO p.13
Median amount public banks are paid to release a cord blood unit $30,000 GAO p.14
Percent of public bank operating costs covered by cord blood sales 81% GAO p.14
Number of cord blood units released from NMDP public banks through FY2012 over 7,000 NMDP
Number of cord blood units released by family banks through Dec. 2012 over 925 PGCB
Chance by age 20 of an allogeneic (donor) stem cell transplant 1 in 2500 Nietfeld 2008
Chance by age 20 of an autologous (self) stem cell transplant 1 in 5000 Nietfeld 2008
Percent individuals requiring a stem cell transplant who have a matching relative 30% NMDP
Percent of NMDP stem cell transplants for Whites with cord blood 16% NMDP
Percent of NMDP stem cell transplants for Asians with cord blood 30% NMDP
Percent of NMDP stem cell transplants for Latinos with cord blood 38% NMDP
Percent of NMDP stem cell transplants for Blacks with cord blood 44% NMDP
Percent of public bank donations discarded as medical waste 60% - 80% Todd 2012
Percent of all newborn cord blood discarded as medical waste over 95% PGCB

Cara Paiuk is a blogger with Connecticut Working Moms, Kveller, and on her own at www.sweetpotatoandapples.com. Together with her husband, she is also an entrepreneur running the company Nutty Cow Inc., a purveyor of dairy-free nut cheeses. The full story of Cara's Wild Ride is available at www.bankingoncordblood.com.

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Competing strategies to expand cord blood use for transplants

Fran Verter standing in a field in New Zealand spring 2012

Frances Verter, PhD, Parent's Guide to Cord Blood Foundation

Today more than 50,000 stem cell transplants are performed annually worldwide, and that number is growing. Only 30% of U.S. patients who need a stem cell transplant can find a suitable donor within their family, while the rest must turn to public registries of bone marrow donors and donated cord blood units. Luckily, cord blood transplants do not have to be as perfectly matched as bone marrow transplants, so they are increasingly used for patients with hard to match genetic types, such as patients of mixed race or of African descent. Cord blood also has the advantage of being ready for immediate use, without spending weeks to months finding and testing potential adult donors. Due to these benefits, more and more physicians are turning to cord blood transplants for treatment of their patients.

Cord blood donations have two big limitations that have kept them from becoming the preferred source for stem cell transplants. One is that there are a limited number of stem cells in a cord blood unit, and often they are not enough for a large adult patient. In recent years transplant centers have worked to overcome this problem by giving patients "double cord" transplants, using two donated cord blood units simultaneously.

But the other problem is that cord blood does not "engraft" as fast as bone marrow: it takes longer for the patient's immune system to recover. Typical engraftment times are 14 days with bone marrow from an unrelated donor, 16 days with sibling cord blood, and 19 days with cord blood from an unrelated donor (1). Engraftment time is critical because the patient does not have a functioning immune system and is at high risk of a fatal infection during that time window. Simply giving twice as many cord blood stem cells does not speed up engraftment; double cord blood transplants take a median of 26 days to engraft.

Graph of engraftment times versus donor types courtesy of Dr. Colleen Delaney

Finding ways to speed up cord blood stem cell engraftment has become somewhat of a Holy Grail for the transplant community, both to save patient lives and to increase the utility of banked cord blood. Current research strategies fall into the following three categories:

Figure credit Dr. Colleen Delaney

1. Culture the cord blood stem cells in the lab to "expand" the number of active cells

2. "co-transplant" cord blood stem cells with another stem cell type that will engraft temporarily and act as a bridge until the cord blood stem cells engraft,

3. Enhance the "homing" ability of cord blood stem cells so that they enter the bone marrow faster and engraft.

Below is a table showing some examples (by no means all) of the leading research using these competing strategies:

Method Median
Engraftment
Time
Concept Proponents
(References)
Notch-mediated
Expansion +
Double Cord
Transplant
14 days Cord blood stem cells are cultured together with recombinant engineered Notch ligand to activate the Notch signaling pathway of cells. The stem cells that test positive for the CD34 assay are multiplied 164 fold. This expanded unit is given with an unmanipulated cord blood unit in a double cord transplant. Delaney &
Fred
Hutchinson (2)
MSC-mediated
Expansion +
Double Cord
Transplant
15 days Cord blood stem cells are cultured together with Mesenchymal Stem Cells (MSC) prior to infusion. The addition of MSC mimics the bone marrow environment so that the Total Nucleated Cell count (TNC) is multiplied 12.2 fold and the CD34 cells are multiplied 30.1 fold. This expanded unit is given with an unmanipulated cord blood unit in a double cord transplant. Shpall &
MD Anderson (3)
NiCord Expansion +
Double Cord
Transplant
13 days Using a proprietary method where cord blood stem cells are cultured with nicotinamide, the company Gamida Cell has created a product called NiCord in which the AC133+ cell fraction is enhanced, and the TNC and CD34 cell doses are multiplied 455 fold and 75 fold, respectively. This expanded unit is given with an unmanipulated cord blood unit in a double cord transplant. Kurtzberg &
Duke U. &
Gamida Cell (4)
Haplo-Cord
Transplant
14 days Patients receive stem cells from a single cord blood unit that is matched, combined with stem cells from a bone marrow donor who is a half-match (called a haploidentical donor). The half-matched bone marrow engrafts first and acts as a temporary bridge until the matched cord blood engrafts permanently. Kwon &
& U. Gregorio
Marañon
in Madrid (5)
Enhance homing by
regulating DPP4
21 days Animal studies show that inhibiting the body's natural dipeptidyl peptidase 4 (aka DPP4 or CD26) allows blood-forming stem cells to engraft faster. Patients receiving single unit cord blood transplants were also given 4 days of oral sitagliptin (aka the diabetes drug Januvia) to inhibit DPP4. The procedure was safe, but the optimum dose for clinical use is still not determined. Broxmeyer (6,7)

It is much too soon to speculate as to which of these methods will be widely adopted. If multiple methods achieve the desired engraftment time of 14 days or less, then the next quest will be to discover which strategies are the safest, easiest, and least expensive to implement. We will bring you additional information on these strategies as trials are completed and results are published.

The purpose of Cord Blood Awareness Month is to raise awareness of the use of cord blood and stem cell research that is improving lives daily and will mean so much to our children's future health.

References

  1. Brunstein, CG et al. 2010 Blood 116(22):4693-4699 (publication)
    Allogeneic hematopoietic cell transplantation for hematologic malignancy: relative risks and benefits of double umbilical cord blood
  2. Delaney, C. et al. 2010 Nature Medicine 16:232236 (press release)
    Notch-mediated expansion of human cord blood progenitor cells capable of rapid myeloid reconstitution
  3. De Lima, M. et al. (Shpall) 2012 NEJM 367:2305-15. (news report)
    Cord-Blood Engraftment with Ex Vivo Mesenchymal-Cell Coculture
  4. Horwitz, M et al. (Kurtzberg) 2012 BBMT 18(2):S326 (publication)
    NiCord® Expanded Hematopoietic Progenitor Cells (HPC) Are Capable of Prolonged Myeloid and Lymphoid Engraftment Following Myeloablative Dual Umbilical Cord Blood (UCB) Transplantation
  5. Kwon, M. et al. 2013 BBMT 19(1): 143-149. (publication & newsletter) Single Cord Blood Combined with HLA-Mismatched Third Party Donor Cells: Comparable Results to Matched Unrelated Donor Transplantation in High-Risk Patients with Hematologic Disorders
  6. O'Leary, Heather; Ou, Xuan; Broxmeyer, Hal E. April 2013 Current Opinion in Hematology 20:pages doi: 10.1097/MOH.0b013e32836125ac (abstract)
    The role of dipeptidyl peptidase 4 in hematopoiesis and transplantation
  7. Farag SS, Srivastava S, Messina-Graham S, et al. (Broxmeyer) 2013 Stem Cells and Development (abstract)
    In vivo DPP-4 inhibition to enhance engraftment of single-unit cord blood transplants in adults with hematological malignancies.