Thursday, September 18, 2014
My Account  | Login
Nashua;41.0;http://forecast.weather.gov/images/wtf/small/nskc.png;2014-09-18 07:37:39
Monday, July 7, 2014

Is allowing ‘unproven cancer cure’ to help Hudson girl compassionate treatment or medical profiteering?

David Brooks

Why would anybody want to prevent a sick child from getting treatment that might be her only hope of staying alive to see her 13th birthday?

That question comes up in the case of McKenzie Lowe, of Hudson, whose family had to overcome strenuous opposition in the medical community to try a treatment developed by a Texas doctor named Stanislaw Burzynski, in hopes that it will cure her inoperable brain tumor. They and their supporters are now raising money to pay the tens of thousands of dollars that Burzynski needs to proceed. ...

Sign up to continue

Print subscriber?    Sign up for Full Access!

Please sign up for as low as 36 cents per day to continue viewing our website.

Digital subscribers receive

  • Unlimited access to all stories from nashuatelegraph.com on your computer, tablet or smart phone.
  • Access nashuatelegraph.com, view our digital edition or use our Full Access apps.
  • Get more information at nashuatelegraph.com/fullaccess
Sign up or Login

Why would anybody want to prevent a sick child from getting treatment that might be her only hope of staying alive to see her 13th birthday?

That question comes up in the case of McKenzie Lowe, of Hudson, whose family had to overcome strenuous opposition in the medical community to try a treatment developed by a Texas doctor named Stanislaw Burzynski, in hopes that it will cure her inoperable brain tumor. They and their supporters are now raising money to pay the tens of thousands of dollars that Burzynski needs to proceed.

“We understand how the family feels. Obviously, we wish the best for McKenzie,” said Ronald Lindsay, president of Center for Inquiry, which has long been critical of Burzynski. The organization has written a letter objecting to the Food and Drug Administration’s recent approval of “compassionate use” treatment for a half-dozen patients, including McKenzie.

“It’s not that the family is doing the wrong thing. What’s wrong is what Burzynski is doing, and the agency failing to carry out its mandate,” Lindsay said in a recent telephone interview. “We are very concerned that what will happen, is what happened in many other cases: People will waste a significant amount of money, line Burzynski’s pockets, and she will die, perhaps after unnecessary suffering.”

The Center for Inquiry is associated with Skeptical Inquirer magazine, which had a cover story in April about Burzynski and “four decades of unproven cancern cure claims.”

“He has had roughly 40 years to show that his treatment is effective, and he has completely failed in doing that,” Lindsay said. “His real speciality is making a profit peddling false hope, exploiting the desperation of families. ... He misleads his patients, saying it’s free of charge, then hits them up with high clinical fees.”

Cost is certainly an issue even to some supporters. Terry Bennett, the Rochester physician who volunteered to oversee the treatment because he thinks it’s worth a chance to help McKenzie – the FDA requires an in-state physician to oversee the injections – has expressed concern about it.

In a June 28 Telegraph article, Bennett said he would continue to oversee the treatment because he had pledged to help
McKenzie, but that he hoped Burzynski would reduce the cost.

“I’m looking at this $30,000 bill on this ‘free’ deal,” Bennett said in the article, referring to the cost of the first month of treatment.

He called Burzynski “an extraordinarily greedy man,” noting that the overseeing nurse is, like Bennett, working for free.

Beyond the money issues, there’s no evidence that the treatment does anything for patients like McKenzie. It involves injecting something Burzynski called antineoplaston, made of peptides and amino acids from human blood and urine.

There’s a reason that the government and medical community has developed long, complicated, expensive methods for testing treatments before they can be used: to protect us from quacks and frauds, and from well-meaning but dangerously flawed ideas. It’s very hard to tell what works when treatment long-term, complicated, chronic illnesses like cancer.

Burzynski’s ideas hasn’t passed that system, despite registering 61 trials with the FDA. None of those trials have produced published results, as documented on the federal website Clinicaltrials.gov. After a 6-year-old boy under treatment died in 2013, the FDA banned even those trials.

But public pressure built up from several places, including the Lowe family and friends. U.S. Sen. Kelly Ayotte joined in, writing the FDA to say, “Whether or not a terminally ill child is able to receive certain types of care should be a decision made by the family.”

This is not an unusual path for Burzynski, who has often used publicity to sidestep regulators, posing with patients who say they’ve been helped, and being the subject of two laudatory documentaries that depict him as a maverick struggling to help patients against the establishment.

It’s also the route taken by a number of unproven alternative therapies dealing with chronic and terminal illnesses. They know it’s very hard to deny sick people a chance, even if it’s an empty chance, so they take the PR route.

“Everyone understand why somebody who is terminally ill is going to be desperate and want to try every possible resource,” said Lindsay. “It may seem heartless – you’re telling a patient they can’t try something they’d like to try. We rely on the agency to give an informed judgment; patients and their families who are desperate are not necessarily the best judge of what’s appropriate.”

GraniteGeek appears Mondays in The Telegraph. David Brooks can be reached at 594-6531 or dbrooks@nashuatelegraph.com. Also, Follow Brooks on Twitter (@granitegeek).