Yale Daily News corrects erroneous report of a #Parkinson’s disease cure

Well, my public shaming seems to have worked.  The Yale Daily News has updated  the erroneous story it published last week indicating that a cure for Parkinson’s disease had been found.   Here’s what the correction says:

A previous version of this article used a quote from one of the study’s lead authors stating that an alternative cure for Parkinson’s had been found. In fact, the results are only preliminary, and a cure for the disease has not yet been discovered.

Let’s hope that Levent Mutlo, the post-doc who made the cure claim, has learned to align his brain with his mouth, and that author of the article George Saussy, will show at least some skepticism the next time someone says something that is too good to be true.

Some people with Parkinson’s are desperate to find a cure for the degenerative neurological disease.    That’s what makes stories like one published in the Yale Daily News especially worrisome because it provides them with a false sense of hope.   Sadly, this isn’t the first time the media has over-hyped a research study and won’t be the last.

A closer look at Yale Daily News’ bogus report on a #Parkinson’s disease cure

One of the reasons I got into journalism was to avoid hard subjects like biology.  Of course, that science phobia came to haunt me a few years ago when I got diagnosed with Parkinson’s disease.   Since then, I have tried to keep up with the latest research on the progressive neurological disease.  That’s why the Yale Daily News’  Oct. 9 report titled “Study Hints at Cure for Parkinson’s” caught my eye.

The story discusses research published in Journal of Cellular and Molecular Medicine that showed that transplanting stem cells into the brains of monkeys with Parkinson’s managed to alleviate some of their symptoms.   This is good news since these stem cells weren’t embryonic, which mostly come from in vitro fertilization procedures and arouse the anger of people opposed to abortion who equate destroying embryos with killing babies.    Unfortunately, the promise of adult uterine stem cells as the basis of Parkinson’s therapy wasn’t exciting enough for the editors of the publication that bills itself as “The Oldest College Daily.”   (Here’s a link to the paper if you are interested. One of the scientists I consulted who read the paper said the results weren’t statistically significance.)

If the misleading headline wasn’t enough to raise unrealistic expectations in the minds of Parkinson’s patients, the quote from post doc researcher Levent Mutlo proclaiming: “We found an alternative, easy way to cure Parkinson’s” would surely do it.  I had to read the sentence a few times to make sure that no one had messed with my meds.   A few thoughts came to mind.    First, Mutlo must be getting with offers from prospective financial backers.    If the drug companies are charging $90,000 for a hepatitis C treatment, I wonder what they could get for a Parkinson’s cure. It may not reap the $1.9 billion in annual sales that Viagra earned last year but it wouldn’t be too shabby either.    The other thing that struck me as strange about that quote was that it was in the fourth paragraph of the story.  I guess they don’t teach the concept of “burying the lead” at Yale.

Then I decided to actually try to read the study and came across the word “preliminary”, which proved this research though interesting hasn’t found the cure for the disease that ails me an about 1 million other Americans.  Indeed, no one that I know of in the Parkinson’s world views stems cells from whatever source as a “cure.”   They might help address some of the motor symptoms associated with the disease such as gait disturbance, which is a fancy of describing like myself who walk like a zombie.   In fact, my zombie walk is so good that I am going to dress up as “Zombie Daddy” for Halloween.

What I am saying here isn’t top secret or new and could have been found by the Yale Daily News via Google.  In fact, scientists have been doing stem cell research on Parkinson’s disease for years.  These efforts have recently gained traction because as a recent Wall Street Journal article noted:

 Several patients with Parkinson’s disease who received brain-tissue transplants from fetuses in the early 1990s have needed little or no medicine to treat the disease ever since—an outcome virtually unheard of in the course of the disease.

Exciting? You bet.  But these scientists don’t claim they have cured Parkinson’s disease either.  In fact, as the article noted “Some patients developed involuntary movements that could be severe.”   If someone offered me a chance to participate in this research, I would  gladly do so knowing the risks.   But the problem is that it takes years, sometimes decades to bring a drug to market.

What’s particularly annoying about the Yale story is how it gave Parkinson’s suffers a false sense of hope.  One of the commenters even said “OMGOSH! I want to be part of the clinical trials.”  Sadly, any human trials on stem cell-based Parkinson’s therapies are years away from happening if they ever happen at all.    Nothing is crueller to someone with an incurable, progressive disease than to fill them with unrealistic expectations.

This article pissed me off so much that I wrote a response to the Yale Daily News and heard nothing.  My comment on the article got deleted.  Undaunted, I emailed Dr. Hugh Taylor, who is the designated contact for the study, and was delighted that he took the time to reply.    His response is reprinted below.

Dear Johnathan,
I agree. I have already spoken to Levent. He is a student who has done good work but has no experience with the press.
I spent a considerable amount of my time with this YDN reporter detailing the limitations of the study and would never use the word cure.
I was surprised that the press contacted a second author rather than the first author or the designated contact author of the study. In the future I will prepare all for this event.
Levent is young, enthusiastic and optimistic.
I will also speak to the YDN reporter again.
Hugh
Just remember folks, the Internet isn’t a vast store of ideas.  At best it’s a 7-Eleven.  What your mother told you when you were a kid applies today: Don’t believe everything that you read.

Throwing cold water on the ALS Ice Water Challenge

  Pete Frates, a 29-year-old former Boston College baseball player who is confined to a wheelchair because amyotrophic lateral sclerosis (ALS), agreed in July to have himself doused with bucket of ice water to raise awareness of his affliction, which also known as Lou Gehrig’s disease.    The ALS  Ice Water Challenge has succeed beyond his wildest dreams attracting 15 million people including everyone from entertainer Justin Timberlake to New Jersey Gov. Chris Christie.   Therein lies the problem.

Though I feel for Frates, whose wife is expecting their first child, and anyone who has been touched by this awful and always-fatal disease, most Americans are never going to meet anyone like him.  According to the ALS Association,  there are at most 30,000 people in the U.S. with the neurodegenerative condition at any given time.      Compared with other diseases that’s pretty small potatoes.   For instance, there are roughly 14 million people with cancer, according to the American Cancer Society.   About 5.2 million people have Alzheimer’s disease and about 1 million have Parkinson’s Disease, including yours truly.

Though the media coverage of ALS Ice Water Challenge talks about the need to raise “awareness” about the disease,  I don’t understand why that’s necessary.    Unlike HIV or Ebola,  ALS isn’t communicable.    Though there is some evidence that ALS has a genetic basis, like Tay-Sachs or Sickle-Cell Anemia,  most cases are “sporadic”, meaning the patient has no family history of the disease.   It seems that the people who need to be aware of ALS are painfully “aware” of it.

Moreover, the $10 million or so that the ALS Society has reportedly raised from the Ice Water Challenge probably won’t make a damn bit of difference in the search for a cure since it costs billions for drug companies to bring new medications to the market.    By the way, the pharmaceutical companies aren’t hiding a cure for ALS or any other awful disease.   These companies are about maximizing profits and shareholder returns if they are publicly traded.   A new wonder drug for Hepatitis C called sofosbuvir costs $90,000 for a 12-week course of treatment.   Imagine what a pharmaceutical company would charge for an effective ALS treatment or — god willing a cure.   It would make sofosbuvir’s costs seem like chump change.

I don’t begrudge the ALS Society their 15 minutes of fame.  Barbara Newhouse,  the non-profit’s CEO, has vowed to invest the Ice Bucket Challenge money “In helping people with ALS and their families and caregivers in the battle against the disease, while resolutely pursuing all avenues to extend, improve and ultimately save lives.” I solute the creativity of ICE Bucket Challenge.   If people are touched by disease, they should donate to the ALS Society, which is rated highly by the watchdog group Charity Navigator.    The publicity surrounding it has received it certainly a godsend.  (Update) The ALS Society is in the black as of its most recent 990 filed today though it had operated in the red during the 2013 fiscal year.

Of course,  I am annoyed that the ALS Ice Bucket Challenge is diverting attention from Parkinson’s disease.  Some may say that people with Parkinson’s and other conditions need to create their own “challenge” to grab the public’s attention.  I understand that argument but it makes me feel kind of sad, as if it I have to make my suffering entertaining to grab the public’s attention.  Even so, that’s easier said than done.

Thanks to the 24-hour news cycle, the public is like kittens playing with a tinfoil ball when they are excited by a fad.  They quickly move onto to something else when they get bored by their toy.  Let’s see how donations to the ALS Society hold up in six months or a year.

(Post has been revised)

Forget “The Michael J. Fox Show”, Working With #Parkinson’s Isn’t Easy

Michael J. Fox’s now-canceled television show told the story of a television reporter with Parkinson’s disease who thanks to the marvels of medical science is able to resume work after a multi-year layoff.    Though the premise of “The Michael J. Fox Show” was certainly  heartwarming, it doesn’t represent the real-world experience of many people with the incurable neurological disorder.   I have Parkinson’s disease and thought the show was mediocre even tough I really wanted to like it. From CBS MoneyWatch:. “This was within a week of having my job review in which he told me how well I was doing my job and giving me a raise,” she wrote in an email. “This produced such sadness I just wanted to die. It took me http://www.youtube.com/watch?v=8M_5EHJOjlE well over a year to start feeling good about myself.”

Michael J. Fox, the #Parkinson’s cause and me

Michael J.  Fox, god bless him, should win a medal one day for all the good he’s done to advance the cause of Parkinson’s research.    As I wrote in The Fiscal Times, the community could not have asked for a better spokesman.

His “Q Score,” a measure of celebrity awareness and likeability, stands at 28 percent, nearly double the 16 percent average. A whopping 88 percent of adults aged 18 and older know who Fox is, more than double 31 percent average for other celebrities.

My one quibble with Fox is that “The Michael J. Fox Show” is  a mediocre effort.    As a Parkie — Parkinson’s sufferer — I wasn’t expecting every episode to be an infomercial about my disease.  What I was hoping for was some laughs, which have been lacking.  The first two episodes were disappointing.  I thought the third one was a little better.

Maybe the show will get better over time.  Maybe it won’t.

But the fact that millions of people are now aware of Parkinson’s that weren’t before is a good thing.

And if Michael J. Fox or any of his people happen to be reading this blog, I think I have got some ideas that can save your show.

Call me. :)