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Thread: Breeding Fear

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    Senior Member Max's Avatar
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    Breeding Fear

    Breeding Fear
    By JOSH GOLDFEIN


    was in a tense negotiating session with a blockhead adversary when my cellphone rang. My colleagues smiled at the interruption. They knew the due date for my first child was less than two weeks away, so I was in the Any Day Now zone. But it wasn't my partner, Yvonne, calling to say she was in labor. It was Anne from the umbilical-cord-blood cryogenic-storage lab. ''Do you have your credit-card information handy?'' she asked sweetly.

    It was less than 24 hours since I first spoke to her. I had resisted committing, but I knew I was going to cave. The cord-blood bank's sales pitch is something you can't refuse. It goes like this: Do you know that your child's umbilical cord is rich with stem cells, which might, in his or her lifetime, after zillions of research dollars are spent, turn out to hold the cures for diabetes and Alzheimer's -- and which even now are key to treating some diseases? They're a perfect match for your child's body, which will never make them again, and if you don't act now, they'll get tossed with the rest of the gooey medical waste left on the delivery table. On the other hand, if you buy our storage kit, your doctor can take the cells risk-free from the cord immediately after the birth. A courier will whisk them from the hospital to a high-security desert lab, where they'll be preserved in chilly serenity, just in case. There's only a tiny chance that you'll ever need them, but what if, God forbid, you lose that bet? What are you going to tell your kid -- ''Sorry, we had a better use for that money''?

    Scary, right? For a mere $1,590 -- plus a $95 annual storage fee -- you'll never have to someday tell your child you didn't have the foresight to save the cord blood. I had already done the research. Yvonne's obstetrician scowled and said that the cord-blood industry was run by profiteers who preyed on fear, but she conceded that she knew of a case where the cells actually were needed. Another friend's father was a geneticist who saw promise in the early developments in the field.

    I called Anne back on a land line (you can't be too careful) and read her my billing digits. It was a no-brainer. Not that we had brains at that moment. I had resolved not to become one of those parents like the mom in ''A Mighty Wind'' who makes her son wear a helmet to chess club, but in the weeks leading up to Gus's birth, I had worked myself into a frenzy of worry. ''Was that a mosquito?'' I'd ask Yvonne. ''I heard that a newborn in Syracuse died from West Nile contracted in utero.'' At that point, it seemed reasonable to fork over two months' worth of day-care money to assure ourselves that by the time our son was in medical school, doctors would be able to heal a spinal-cord injury or cure Parkinson's by injecting him with his own stem cells, which his parents had lovingly preserved for him. Maybe we could even find a way to make the cells available to other people who might need them if Gus didn't.

    Our friends had sent us contraptions for Gus to sleep in, told us which items to bring home from the maternity ward, even which detergent to wash his first post-hospital outfit in. But until we starting asking friends whether they'd frozen their baby's cord blood, no one volunteered that if we wanted to be really safe, we should rent storage in a deep freeze for his most precious bodily fluids. The price tag made them circumspect -- not because it's a luxury (no one had any compunction about telling us which fancy stroller is the best) but because it's antiegalitarian. Private school is different, somehow, because you can't just buy your way in. (Can you?) Here, if you can pay when the cord is cut, you're at the head of the line, albeit in some future sci-fi medical delivery plan. The whole idea of a private market for cell storage made us queasy, especially after the Bush administration politicized the rules for stem-cell research. Still, the cord-blood industry has a perfect marketing plan, a product you can't not buy, assuming you can afford it and you find out about it in time.

    Once we'd signed up, I felt compelled to come clean. People would ask if we were ready for our new arrival. ''I've got the cord-blood storage kit,'' I'd gamely offer. ''Is that the 'bobo' version of a placenta party?'' asked one committed nonbreeder, situating us in the vanguard of the yuppie ''bourgeois bohemia.'' To me, it seemed closer to the burial policies my clients at Legal Aid were talked into buying for their children, the difference being that it wasn't coming out of our food budget, and that we don't have to make consumer choices on the expectation that our child will die before we do. Now I can appreciate how someone could make such an irrational economic decision: never underestimate a new parent's desperate need for security. If there's a sucker born every minute, at least we come by it naturally. We haven't thought much about Gus's cord blood since he was born. I've found more practical things to worry about, like jaundice, SIDS and smotheration by cat.



    Josh Goldfein is a lawyer and writer living in Brooklyn.



    http://www.nytimes.com/2003/07/20/ma...partner=GOOGLE

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    Senior Member Max's Avatar
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    I wonder..

    Mike & Emi,

    Did you collect cord blood cells from your babies?


    Thanx

  3. #3
    My sister had her's saved. The place she found is in Florida and is only $50 a year for storage.

    _____
    Learn from the mistakes of others, you won't live long enough to make all of them yourself.

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    Biological safety deposit

    Biological safety deposit
    By Marie McCullough
    Inquirer Staff Writer


    AKIRA SUWA / Inquirer

    Donna Altamuro, a technician at the Coriell Institute in Camden, processes umbilical cord blood.


    In 1988 in Paris, a boy with a life-threatening form of anemia was saved by a new, experimental therapy - a few ounces of blood from his newborn sister's umbilical cord.

    Soon, what had been just a waste product of childbirth was being hailed as a therapeutic miracle. Facilities for freezing and storing umbilical cord blood began to spring up around the world.

    Now, 15 years after that first "cord blood transplant," it is clear the procedure has several advantages over a bone marrow transplant, the older, more common way of rebuilding damaged blood and immune systems.

    But as often happens with breakthroughs, marketing has gotten ahead of science.

    Cord blood transplants remain rare and experimental - worldwide, there have been fewer than 2,500 - and the vast majority are arranged through public, nonprofit cord blood storage banks, which operate like blood banks. Nonetheless, more and more parents are paying commercial storage companies to preserve their newborns' cord blood, attracted by advertising touting a "once in a lifetime" opportunity to buy "biological insurance."

    The chance of needing privately stored cord blood is so remote that the American Academy of Pediatrics has come out against routine private banking, and several leading transplant physicians have criticized the practice as "unrealistic and deeply exploitative."

    Still, commercial companies now have well over 100,000 cord blood specimens, at least twice as many as public banks.

    Parents who can afford private storage - about $1,000 initially plus $100 a year - consider it a small price to pay for a sense of security.

    Even some experts feel that way. Transfusion medicine specialist Zbigniew Szczepiorkowski, chair of a committee of the American Association of Blood Banks, which offers voluntary accreditation to cord blood banks, said he considers private storage "medically unjustified." Yet he and his wife are paying to do just that with their son's cord blood.



    Cord blood is medically valuable because, like bone marrow, it is rich in blood stem cells, the precursors of red blood cells, infection-fighting white blood cells, and clot-forming platelets.

    A patient whose own blood cells have been destroyed by high-dose chemotherapy and radiation can be given a transplant - actually, it's more like a transfusion - of stem cell-laden bone marrow or cord blood to resupply his entire blood and immune systems.

    While a bone marrow or cord blood transplant is a risky last resort, the procedure has been used successfully to treat about 70 genetic, blood and cancer-causing disorders, including leukemia, lymphoma, aplastic anemia and sickle-cell anemia.

    It is crucial that the transplanted cells have immune proteins that closely match the patient's own. If not, the transplant may be rejected or, worse, attack the patient's tissues.

    With some diseases in adults, this tissue-matching problem can be avoided by removing some of the patient's own bone marrow before chemotherapy, then putting it back to rebuild the blood supply. Such a self-transplant is ultra-rare with cord blood, however, because many childhood blood disorders are inherited; a child's own cord blood would likely reintroduce the disease.

    Frances Verter, a Princeton-trained astrophysicist, learned about all this the horrible way - by losing her first child to leukemia, a blood cancer.

    Shai Miranda Verter spent much of her not-quite five years in hospitals, including Children's Hospital of Philadelphia, where she received a bone marrow transplant. Despite a brave fight, she died in 1997.

    In 1998, Verter became pregnant with her second child. She decided to privately store the precious drops of cord blood, mostly out of fear and grief.

    "I knew pediatric cancer... wasn't supposed to happen again, but I was just being very paranoid because a one-in-five-million disease struck my first child," recalls Verter, who works at NASA's Goddard Space Flight Center in Greenbelt, Md.

    But getting basic, unbiased information about the nation's cord blood banks was tough.

    Ultimately, she assembled an encyclopedic consumer's guide to cord blood storage options. As a tribute to Shai, and to fill an obvious void, Verter maintains it on a Web site, www.parentsguidecordblood.com. Numerous public and private banks now link to it.

    Verter does not offer recommendations. Personally, though, she is a fan of private storage. Her data show private U.S. companies have had just 71 transplants. Still, she believes that someday scientists will figure out how to use blood stem cells to regenerate damaged nerves, muscles and other tissues - thus making a hoard of perfectly matched stem cells invaluable.

    But as her Web site explains, stem cell science is not there yet, not even close.

    Only the primitive stem cells found in early embryos are known to be able to turn into all types of tissues, and scientists have barely begun to understand how.

    That is not the impression private banks foster.

    At CorCell - a Philadelphia-based, eight-year-old, private bank that has never had any of its 7,000 cord blood units transplanted - president Marcia Laleman said: "There is research going on that demonstrates applications in diabetes, lupus, Parkinson's and other diseases... . All our advisers say the uses will explode in the next five to 10 years."

    While that is debatable, cord blood does have advantages. It is simple to collect and retrieve from storage; a registered bone marrow donor, in contrast, must be located and go through a painful procedure when the marrow is needed. Cord blood stem cells also multiply more rapidly, are more forgiving of imperfect tissue matches, and are less likely to attack the patient's own tissues than marrow stem cells.

    The problem is that all blood-making stem cells, no matter the source, have limitations.

    Unlike embryonic stem cells, blood stem cells cannot multiply in a culture dish. (At least one group of researchers claims to have overcome this problem, but the jury is out.) Also, scientists cannot distinguish stem cells from other cells in cord blood or bone marrow; they use white cell surface proteins as a rough indicator of the presence of stem cells.

    Compounding these problems, umbilical cords simply do not yield much blood. Public storage banks generally reject a cord blood specimen smaller than 40 milliliters - about three tablespoons - because it is unlikely to contain enough stem cells to transplant even to a small child. (To ensure an ample number of stem cells for an adult transplant, bone marrow is preferred.)

    Although the amount of cord blood is crucial, some private banks do not set a minimum for storage.

    "I've had calls from families where they saved 14 milliliters or seven milliliters. It's worthless," said cord blood transplant pioneer Joanne Kurtzberg, a Duke University specialist in pediatric cancer and blood diseases.

    The biggest question - how likely a child or adolescent is to ever use his own stored cord blood - draws wildly differing estimates. The most popular seems to be 1 in 10,000.

    To put this in perspective, a person is more likely to be killed by lightning (1 in 9,000).

    There is a slightly higher chance of use by a sibling. In fact, the American Academy of Pediatrics says that if a family already has a child with a disease that may require a transplant, it makes sense to bank the cord blood of subsequent babies.

    However, the chance of a tissue match between two siblings is only about 25 percent.

    The chance of a child finding a cord blood match in the nation's public banks is 75 percent, and even higher if international databases are searched, said Dennis L. Confer, chief medical officer of the National Marrow Donor Program, the country's largest network of public blood, bone marrow and cord blood banks.



    One of the public network's members is the seven-year-old New Jersey Cord Blood Bank, housed in the Coriell Institute for Medical Research in Camden. This month, the bank proudly announced that four of its 1,500 cord blood units have been used, bringing in revenue from health insurers who cover transplants. The bank has now begun paying back the $5 million state loan that created it. (No public banks are based in Pennsylvania.)

    The growth of nonprofit cord blood banking is an important public service, experts agree, but it is facing financial, political and regulatory obstacles. New Jersey's bank, like most of the nation's other 17 public banks, is far from breaking even. It recently stopped accepting cord blood donations from women delivering in North Jersey hospitals, although it continues to collect at Cooper Health System, Virtua Health, and Our Lady of Lourdes Hospital, all in South Jersey.

    "If there were lots of money to build this collection, we'd love to collect at more hospitals," said David P. Beck, Coriell Institute president.

    Similar problems hampered the bone marrow transplant system in the late 1980s, before federal legislation brought order - and more funding - to it. Confer is optimistic that, as the therapeutic value of cord blood grows, support for public collection will grow.

    That, in turn, would open doors for the growing numbers of expectant parents who would like to make a tiny donation toward children's health.

    "I think the untapped reservoir of people who want to [store cord blood], but don't want to spend money, is enormous," Verter said.


    --------------------------------------------------------------------------------
    Contact staff writer Marie McCullough at 215-854-2720 or mmccullough@phillynews.com.

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