Reports that the registry was overcharging insurance companies by the thousands and using female models to recruit participants may have turned some people off from donating bone marrow, regardless of the organization.
We take you inside a bone marrow donation and provide a look at what it's all about.
Caitlin Raymond has been accused of charging insurance companies $4000 dollars for testing that typically costs $100 dollars.
And reports surfaced that the registry was using female models to attract and recruit participants.
All that may have turned some people off from donating bone marrow, regardless of the organization.
But as NHPR health reporter Elaine Grant has learned, there are never enough donors for the patients who rely on them to save their lives.
FADE UP MACHINE NOISE
Idalina Williams: “While she’s getting you set I’m gonna ask you some questions….Any fevers over the last 24 hours? "
I’m here at Dartmouth’s Norris Cotton Cancer Center– the only bone marrow transplant center in the state.
Nurse Coordinator Idalina Williams is prepping a young donor who, for reasons of confidentiality, we can identify only as Emily.
Sitting up in the hospital bed in a room full of high-tech equipment, her dark eyes are wide.
She looks nervous.
Any minute now, she’ll begin the long and uncomfortable process of donating stem cells.
That’s what doctors are really after when they talk about bone marrow donation.
For many patients with leukemia, multiple myeloma or Hodgkin’s disease, getting new, healthy stem cells means the difference between living and dying.
Idalina Williams again:
"The stem cells are premature cells in your marrow that become healthy, they go into a cell line of either red blood cells, white blood cells or platelets."
22 years ago, when Doctor Kenneth Meehan first started practicing transplant medicine, physicans got stem cells by taking out bone marrow.
“That’s an OR procedure, generally involved general anesthesia, the patient would lie flat on the table and we would have two physicians extracting bone marrow from the patient’s hip.”
Meehan, who now leads Dartmouth’s transplant unit, says doctors don’t harvest the actual marrow very often any more.
These days, the procedure Emily is undergoing is typical.
Dr. Kenneth Meehan: “We can give a patient, or a potential donor, a medication which is just shot under the skin for roughly four or five days, and that’s sort of like fertilizer for the bone marrow.”
Idalina Williams: “Once she’s done getting that side secure, I’m going to give you the shots on this side before she sticks you here, OK? Nurse: No jumping. Ida: So that’s it, no more shots, you’re done, Yay. .”
Dr. Kenneth Meehan: “Their bone marrow is stimulated to the point that they release bone marrow cells into the blood and we can collect bone marrow cells from the blood and we call that peripheral blood stem cell transplant…”
Our bodies aren’t meant to start spitting stem cells into our circulatory system this fast, of course.
And the drug creates some pretty unpleasant side effects.
Even Emily, who’s glowing with health, felt them.
Emily: “They told me the injections would make me a little weak or achy, but I tend to think I’ll be fine…when it hit me, it kicked my butt a little bit. It was nothing I couldn’t handle…”
Like many donors, Emily has a very personal reason for going through this.
Emily:I went to a bone marrow drive for a friend of mine who had cancer back in 2003, I think, there was a big drive, hundreds of people were there, and she did not find a match in that process. She ended up dying in July 2004. She was only 25 years old…”
So she scoffs at the discomfort she’s enduring – comparing it to what her friend went through.
There are a lot of benefits to a blood stem cell transplant over a bone marrow harvest.
For Emily, it’s an outpatient procedure.
A long one, to be sure.
She’ll lie here, hooked up to a machine that separates the stem cells from her blood, for four hours today and again, four hours tomorrow.
The nurses put an IV in each arm.
Blood comes out of Emily’s right arm.
And goes back in the left.
Idalina Williams explains what’s happening.
“You’re drawing blood from one arm, it’s going through this whole machine, ok, and spinning out these layers, and collecting the stem cells into an IV bag. The rest of the blood is continuing through the machine, through a blood warmer so the donor does not get chilled, and back to the donor through the second iv…We process about 24 liters in that five or six hour period.”
But there’s only four or five liters of blood in the average human body.
Idalina Williams: “So your blood is just being processed over and over and over again so it’s coming out, being processed, going back to you, and it just keeps happening over and over again.”
Now that Emily’s hooked up – well, it’s no big deal.
Emily: “IThey gave me some numbing for those big thick needles they put in my arm, laughing, so that’s good."
Dr. Kenneth Meehan says the process represents a huge advance in medicine for recipients.
Kenneth Meehan: ”Blood transplant is actually better than bone marrow transplant. The cells tend to grow quicker after a transplant so that means the patients get out of the hospital sooner, they’re on antibiotics a fewer number of days also.”
But for a patient, there’s nothing easy – or guaranteed -- about getting a transplant.
In order to get a transplant in the first place, cancer patients receive very high doses of chemotherapy, sometimes with radiation.
It destroys the cancer cells but also the bone marrow.
Kenneth Meehan: “So as a result of that we have to in a sense rescue them by giving them either their own bone marrow that we stored previously or someone else’s bone marrow.”
It can be very hard to find a matched donor.
Meehan says there are never enough.
He’s waited, with patients and their families, for cells to arrive from a donor center half a world away.
Kenneth Meehan: “If they don’t come, this patient is going to die, and commonly, I’ll see patients who would not have lived unless someone donated cells.”
And sometimes they won’t live unless a donor is willing to give twice.
Idalina Williams: "This is the transplant unit here…
Idalina has brought me to the transplant unit to visit Bob Geary, who has myelofibrosis – a serious illness that destroys his bone marrow.
Geary’s booming voice sounds like it comes from another person.
In his 60s, his eyes are bright above hollow cheeks.
He is emaciated – and yet he’s willing to get even more chemo than he’s already had.
Bob received a stem cell transplant in December.
Bob Geary: “It failed. No engraftment. It happens. It was a bummer, but we’re past that. We’re going to do it again. We start Friday this week with chemo, a stronger regimen this time, much stronger.”
And that means his donor has agreed to give stem cells again.
Bob Geary: “The first week or so you’re here, but you’re in tough shape, you really are, but your brain’s still working, and I kept saying how do you say thank you, how do you say thank you?... And this time, because I’ve been lying here for a few weeks now, it’s like how do you say thank you a second time?...”
Geary hasn’t yet figured that one out.
But he has time.
He received his second transplant not long after my visit.
So far, he's doing well.
For NHPR News, I’m EG.