February 10, 2009

Michigan man a success in MS stem cell study; coverage upsets me

My January issue of MSFYI and several Google Alerts also had good news about a small stem cell study.

Here's what the newsletter said:
"Three years after being treated with an experimental procedure that used their own stem cells, a small group of people with early cases of relapsing-remitting MS appear to have either halted or even reversed their course of disability."

The study, conducted at Northwestern University in Chicago, involved 21 people who had "autologous hematopoietic stem cell transplantation, a procedure in which their own blood-forming stem cells were extracted, and then reintroduced into their systems after each person was treated with chemotherapy to kill immune cells in their bone marrow."

The goal to "reset" the immune system seemed to work with most:
  • 17 showed improved EDSS scores,
  • 16 had no relapses after three years,
  • none have had a worsening of MS symptoms.
Previous studies using stem cells in people with more advanced cases of MS have not been as successful, and some attempts have been fatal due to methods used to kill immune cells. A new technique, believed to be safer, was used in the most recent trial.

The study's lead author, Richard Burt, a Northwestern associate professor, said in media reports that the therapy may not be effective in late-stage MS because too much damage from immune cells had already been done. On the mean, those involved in the newest study had been diagnosed with MS for five years.

A larger trial, with 55 patients in the U.S. and Canada, is now planned for what the Chicago Sun Times said: 'First time we have turned the tide' on MS - Injecting early patients with own stem cells seems to reverse disability: researcher."

The Sun Times is where I also learned that a Michigan man participated in the trial. And that's where my disappointment with the media begins.

I was surprised that I couldn't find the Michigan connection in any of reports on the study in Michigan media. Surely, I'd learn more in local media. (I live in Michigan.)

Here's what the Sun Times said:
Barry Goudy, of Woodhaven, Mich., was one of the success stories. Goudy was diagnosed with MS in 1995. Since his stem-cell injection in 2003, Goudy said he hasn't had the fatigue, blurry vision and weak limbs he used to experience with every relapse. Goudy noticed improvement in his symptoms within six months.

Now, he's back to working full-time at a car dealership and said he doesn't have to get weekly and monthly drug injections anymore to keep his condition in check.
Except, I don't think he lives in Woodhaven. I know he's not working at a car dealership, if he ever did. But details beyond his participation in the study are fuzzy after watching what four TV stations did with a video report featuring Goudy and reading a number of reports in various newspapers and medical journals.

The Journal of the Medical Association did a video report in April 2008. Here's an abstract: AMA report on how stem cells treat autoimmune (and other) conditions, focusing on Barry Goudy - who celebrates 5 years free from Multiple Sclerosis symptoms after treatment. Clinical Trials ongoing...

From the JAMA site:
Barry Goudy learned he had multiple sclerosis in 1995. He was losing feeling in his left leg, and then his vision began to go.

“I went back to my neurologist and said, ‘Tell me how I can fight this,’" Goudy said.

Goudy enrolled in a clinical trial in 2003.

After five days of chemotherapy to destroy his immune cells, doctors used his own stem cells to rebuild his immune system.

He said it worked wonderfully for him.

“I have no symptoms of MS. I do no treatment for MS. I do no shots,” Goudy said.
Researchers reporting in the Journal of the American Medical Association reviewed the outcomes of about 2,500 patients who had stem-cell transplants. They found that it helped many patients with auto-immune diseases and even helped improve heart function for patients who suffered heart attacks.

“It's a whole new approach to these diseases. Rather than just surgery or drugs that you can use, (it is) a cellular approach that seems in many different studies to be benefitting the patient,” said Dr. Richard K. Burt, chief of the Division of Immunotherapy for Autoimmune Diseases at Northwestern University’s Feinberg School of Medicine.

Unlike embryonic stem cells that can only be collected after the destruction of an embryo, adult stem cells come from a patient’s own blood or bone marrow or another adult’s.

“There's very low risk – less than 1 percent mortality from the procedure,” Burt said.
Goudy now leads an active life, even coaching a hockey team.
“I've had five years of good life. Five years! If I didn't do the transplant, I would probably be in a wheelchair today,” Goudy said.
Last July, Goudy reached the five-year mark. You can read about some of his early MS treatment efforts.

ABC-12 in Flint was among the stations to pick up the JAMA video last winter, including information about Goudy in a report on stem cell research.

WRAL did a report too, using the video.

In 2006, in a radio show he was working in the automobile industry (read the transcript)

He's testified on stem cell research, where some other details are fuzzied up.

I'm fairly sure he's now a hockey coach at a suburban Detroit high school - contract approved in August. I thought about tracking him down - it's that need to know urge. But then realized there's no reason to intrude on his life. I just need to remember to keep question what I see and read on "news" reports.

Related posts:
If I ask, will questions go away?
Old drugs inspire hope for those with MS


  1. The commercial aspect to these "news stories" about medical breakthroughs bugs me too. I watched the video and it reminds me of the work that Ivanhoe Broadcast News produces, especially the medical ones.

    I write at HealthCentral and they have licensed some videos from Ivanhoe. I've seen the very same stories on WebMD (with WebMD-specific labels) and both sites feature out-dated pieces.

    I've gone through and researched the material and found that the "breakthrough" research had quickly fallen away and nothing came from it.

    Too often it makes you doubt (if you bother to look into it) the validity of the "news stories." Thanks for discussing this particular story.

  2. I know it is hard to understand some of the research and it tempting for reporters to rely on paper and video handouts to quickly turn out "news."

    Plus, researchers and their universities want promotion to ensure funding keeps coming.

    In this case, it also looks like there was a campaign to ensure stem cell rresearch continued so details change based on audience.

    I believe people are doing the best they can. Yet how can basics such as age and occupation be so hard to track down. Or be wrong in the handouts.

    I also don't understand why more of the studies don't feature the subject who are successful. Most if us remember stories about people so much better.