Cord blood banks sell parents on promising stem cell research, but with no guarantees – The Arizona Republic

Stem cell treatment promise sells pregnant parents on cord blood banks Arizona Republic

Moments after Linda Buzans son Luca is born, her OB-GYN goes to work. She carefully cuts the white umbilical cord, then clamps it shut before any blood can escape. Once the cord is cleaned, she carefully inserts a needle with a long tube attached and lets the umbilical cord blood pump into a collection bag.

From there, the sample will travel in a labeled collection box to Tucson, where a laboratory for one of the oldest and biggest private cord blood banking companies nationwide is located. There, at the Cord Blood Registry laboratory, or CBR,baby Lucas umbilical cord blood will be frozen in a metal tank at less than minus 320 degrees, joining almost 900,000 other samples in storage,including that of his older sister, Lola.

Umbilical cord blood is full of stem cells, so it can be transplanted into patients to treat certain types of cancers, diseases and blood disorders. Umbilical cord blood works as an alternative for many patients who cant find bone marrow transplants.

Butthe odds that either Lola or Luca will develop a disease like cancer that would require an umbilical cord blood transplant are slim,about one in 1,000 or one in 2,000, according to University of Arizona umbilical cord blood stem cell researcher David Harris.

Its difficult to reconcile saving for yourself because youre afraid of cancer, Harris said. Do it based on facts, not fear.

Stem cells in umbilical cord blood could have another purpose: regenerative medicine. Current clinical trials show promise for the use of umbilical cord blood to treat a host of conditions such as neurological disorders, orthopedic injuriesand even diabetes. These potential usages are a new draw for parents to bank their childs umbilical cord blood.

The odds of use for these regenerative medicine applications is much, much higher, Harris said.

He estimates the odds of developing a disease that could be treated by umbilical cord blood stem cells is about one in ten.

Butthe science is still developing, which meanscompanies are selling parents ona product they may never be able to use.

In the past two decades, Harris has been involved with studies to treat kids with conditions like cerebral palsy, strokes, traumatic brain injuries and diabetes.

When you now start to talk about being able to treat a knee injury or a heart attack, or a stroke the ability to actually do that and then to see that it works is very exciting, he said. And thats really where the use of cord blood is going.

So far, Harris said hes seen the most success with orthopedic injuries and in treating children that have suffered from strokes.

With strokes, Harris said he observed children go from being completely paralyzed on one side to being fully functioning.

DONATIONS:Donated cord blood saved Sophie Lee's life, but most parents throw it away

Though some initial results show promise, Harris acknowledges that to move forward with any of these treatments, researchers need to demonstrate a good success rate.

The big question when it comes to using cord blood for regenerative medicine is when it will be incorporated into actual medical practice. For safety reasons, FDA approval for new treatments can take years,if not decades.

Currently, the only way to use umbilical cord blood stem cells for FDA-approved regenerative medicine is to qualify for and register in clinical trials to treat specific conditions. Harris has banked his owns sons cord blood on his belief that more and more umbilical cord blood treatments will become commercially available in the future. Buzan has done the same.

Brandon Buzan packages up his newborn son's umbilical cord blood to be shipped to the Cord Blood Registry lab for storage.(Photo: Amanda Morris)

Its not something that you want to say I wish I had done this, because you cant do it later.You have this one shot,"Buzan said."Even its like one percent of saving their life or helpingI mean for your child, youd do anything as a parent.

In Arizona, obstetrics health providers are required by law to educateexpectant parents about the options to publicly donate or privately bank cord blood. YetDr. Jaime Shamonki, the Chief Medical Officer of CBR, estimates that less than 5% of the population chooses to bank cord blood. A small percentage donate the blood, but a much larger percentage simply throws it away.

Kelly Helms, a Scottsdale-based OB-GYN, said the most common reasonher patients give for not banking their childs cord blood is the cost.

Buzan, who is one of her patients, said she got a discount to bank her childrens samples with CBR because of a connection her familyhad with the company. She paid a little over $1,000 for the initial processing and storage fee for both samples, and continues to pay an annual storage fee of about $120 for each one.

To bank one sample of cord blood and cord blood tissue, the initial cost is$2,830, according to CBR, with a $360 annual storage fee after that. To bank just the cord blood, not the tissue, the initial cost is $1,680, with a $180annual storage fee. Both cord blood and cord tissue have different types of stem cells that are thought to potentially repair the body in different ways.

The stem cells and potential treatments for both sources arent fully understood yet, so there are no guarantees that parents or children will actually be able to use the samplesthey pay to store.

Of the nearly 900,000 samples CBR keeps in storage, Shamonki estimates about 600 have been released for customers to use,representing a usage rate of less than 1 percent. According to Shamonki, the low sample release rate is due to FDA regulations, which stipulate that umbilical cord blood can only be used in approved treatments or clinical trials.

If we didnt have the FDA, then I would be able to release like thousands of units, she said. Its really a regulatory problem, its not a utility problem.

To boost usage of the samples, CBR maintains a registry to match eligible customers to clinical trials and has partnered with research institutions to sponsor clinical trials.

Despite FDA regulations, which Shamonki acknowledges are important to protect public health, she said CBR is releasing more and more units every year. Of the samples taken out, about 83% are used for regenerative medicine purposes, according to CBR.

What I know is that in the next fiveyears, next 10 years, there will be so many more opportunities, Shamonki said. So just because you dont have 100 different clinical trials you can sign up for tomorrow doesnt mean that these applications wont exist in fiveor 10 years, and your child might need it.

CBR is one of many companies that market cord blood banking to new parentsand is one of the biggest. Helms said she always recommends her patients to do their research and pick one of the larger, more established cord blood banking companies. Such companies might includeCBR, Cryo-cell, or ViaCord.

I've had patients lose their cord blood, privately banked blood, because they went with a small company and now they closed down, Helms said.

Even with some of the larger companies, the process of cord blood banking doesnt always run smoothly.

Although she couldn't have her daughter's cord blood stored, Chelsea Radford says she paid over $1,000 to ViaCord for processing fees.(Photo: Amanda Morris)

The first time Phoenix-resident Chelsea Radford heard about cord blood banking, she was already pregnant and facingmyriaddecisions that were sometimes overwhelming. She had never heard of it before reading some pamphlets from her gynecologist, but she was quickly sold on the idea of banking her daughters cord blood and tissue with ViaCord.

Radford has a history of Alzheimers disease in her family, and said she was initially interested in what potential treatments cord blood and tissue might offer for the disease. In 2015, one study suggested that human umbilical cord blood cells could have therapeutic benefitsin mice with Alzheimers disease.

In addition to researching studies, Radford said she spent hours looking at different cord blood banking companies and asking representatives questions about the process. Of all the companies, she found ViaCord to be the most responsive and willing to answer her questions in-depth.

Having the communication and the availability that is what sold me on ViaCord. But that really quickly ended there with the sale, she said.

On the day of her daughter Brylees birth in July2018,Radford went to a hospital that ViaCord had assured her was familiar with collecting cord blood. Soon after, she got a call from the company saying her sample couldnt be stored because not enough blood was collected. Shestill owed ViaCord over $1,000 for a lab processing fee.

Radford wanted more information before she would agree to pay, and said she spent monthscalling, leaving the company messages, and getting no response.

After the birth, nobody responds to anything, she said.

The company called her three months later to tell her that if she didnt pay her bill, they would send it to collections.

I got pissed! Radford said. The only thing they seem to care about is the moneythey dont care about is having a conversation with me about why and how this sample didnt turn out the way it shouldve. All they want to talk to me about is the money.

Still, Radford said she refused to pay a dime until she got an explanation. She contacted the doctor who delivered her baby and said she learned the doctor had never done a cord blood collection before and had never been trained on how to do one.

Finally, she spoke with a ViaCord representative, who she saidtold her this sometimes happens, butthe company wasnt responsible for the fact that the doctor who took her sample didnt take enough blood.

Frustrated and inundated with other responsibilities that come with caring for a newborn, Radford said she decided to pay the fee so that she could move on.

We paid a company to do nothing for us just to get them to leave us alone and not send a bill to collections that I dont feel like we shouldve had to foot in the first place, she said.

If she had a second child, Radford said she wouldnt choose to cord blood bank again, and doesnt recommend it to other moms.

You can still get stem cell help without using your own banked blood and tissueThis is just a costly option that is not a given that its going to work out 100% in your favor, she said. You could have a newborn and be responsible to pay thousands of dollars for nothing.

ViaCord did not respondto multiple requests for comment.

If parents decide to pay for private banking, Radford said they should be careful about making sure the doctors delivering their children know how to collect the samples. Shesaid blood banking companies should be more responsible in making sure that doctors are trained in blood collection.

While Helms is comfortable doing cord blood collection, she was never formally taught how to do it while studying and training to be an OB-GYN.

It was basically taught by the company, she said. Each kits a little different.

Helms said the procedure is fairly simple, but every once in a while, she comes across a company shes never heard of, and a kit she is unfamiliar with. Sometimes she needs to take on the extra responsibility of making sure she understands the directions for that particular kit.

Each company really should take on the responsibility, she said. I can't surf the Internet and look for every YouTube video on every cord blood banking company, she said.

Another potential complication in banking cord blood orblood tissue is that the blood or tissue can become infected.

Birth is not that clean of a process and ideally when you take that needle and you drain the umbilical cord, youll have cleaned that umbilical cord first and you hope that no bacteria get in to the cord blood unit, but its possible, it does happen on a number of occasions, Shamonki said.

Shamonki says CBR tests for any bacterial contamination before storing the tissue and works with parents who have infected samples to discuss possibilities of being able to use the unit in the future.

A Cord Blood Registry worker processes cord blood for storage in the company's Tucson laboratory.(Photo: Amanda Morris)

Nobody knows when regenerative medicine applications for cord blood will become readily available as FDA-approved mainstreamtreatments. New applications for cord blood are being tested every year and new technologies to expand and utilize stem cells in cord blood are constantly being developed.

We dont really know what the limits are, but there are limits to what (umbilical cord blood stem cells) can do, Harris said.

Because cord blood banking is so new it has only been around since 1989 its unclear how long samples can be stored and remain effective.

According to Harris, cord blood samples can still work after being stored for about two decades.

We recently took one out that was 24, 25 years old, he said.

He speculates that properly stored cord blood samples could probably work throughout a person's lifetime, if not longer.

Buzan is aware that stem cells and cord blood treatments are still a new science with no guarantees, but she also believes in the treatments future potential.

Every month, she and her husband receive email updates from CBR that explain some of the new clinical trials and research discoveries involving cord blood.

To be honest the most exciting thing is the unknown the unknown of what the cord blood could do, what theyre looking into now, thats fascinating, she said. Im just so glad we live in a time that where this is available to use this was not an option for my parents or my grandparents.

Amanda Morris covers all things bioscience, which includeshealth care,technology, new researchand the environment. Send her tips, story ideas, or dog memes at amorris@gannett.com and follow her on Twitter @amandamomorris for the latest bioscience updates.

Independent coverage of bioscience in Arizona is supported by a grant from the Flinn Foundation.

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Cord blood banks sell parents on promising stem cell research, but with no guarantees - The Arizona Republic