Burzynski Patient Elizabeth K’s Story

*An appeal to encourage Congress to investigate this follows Elizabeth’s story*

In September 2007, Elizabeth K.’s parents noticed that their 20-month old daughter’s head was tilting. Soon she was falling down. The subsequent diagnosis was Diffuse Intrinsic Pontine Glioma. The family tells the story in a video.
She went through chemotherapy and radiotherapy almost immediately. According to a news report, the conventional treatment had an effect for the better part of a year:

Elizabeth underwent an aggressive, six-week regimen of chemotherapy and radiation. By early November, more than two months after the initial diagnosis, the tumor had shrunk 25 percent.

The family kept Elizabeth on weekly chemotherapy for months to keep the tumor at bay, and it did not progress until October 2008 when her head started to tilt again. This time the prognosis was bleak. In November, the family flew down to Texas to the Burzynski Clinic.

The family, like the others on this site, spent 3 weeks in Houston, learning how to give Elizabeth her treatment. It seems that she is on the antineoplaston treatment, at least that’s what I take from the phrase “low-toxic gene therapy” that “is still undergoing FDA trials.” According to a fundraiser website that was set up for Elizabeth:

The treatment she’s on, requires her to be hooked up to IV and pump 22 hours a day.

This is par for the course. She pulled around a little Elmo bag and the drug would be pushed through a port in her chest. The family was at the Clinic near the holidays and saw Santa while they were there.
They came home for Christmas, and reported:

At the end of January 2009, Elizabeth had her MRI, which would tell everyone whether this treatment is working. Now, most people who find out that there tumor is rapidly re-growing, would be happy to hear that after 6 weeks of treatment that the tumor was the same size because that would mean the treatment is having an effect. Well you can imagine the feeling of relief, joy, and excitement everyone felt when the MRI showed Elizabeth’s tumor was SHRINKING!!!!!

In mid-February, the family learned that they would be going on a trip to Disney World thanks to the Make-a-Wish Foundation. My March, when they are in Orlando, the family is reporting an 18% shrinkage in tumor size.
We have almost no information about Elizabeth’s course of treatment. On August 15th, Elizabeth went to see her favorite musician, Kenny Chesney, play live at Gillette Stadium and she had a wonderful time. It seems that she was still on treatment at the time, according to a news report:

The day after the concert was also memorable, [Elizabeth’s mom] said. Friends, family and people the family had never met participated in “Take A Ride For Her Life” – a motorcycle run to raise money to cover some of the family’s medical expenses.

The ride started and finished at the Players Sports Bar & Restaurant in Rockland and raised about $4,500. The [Ks] incurred about $7,500 a month in expenses not covered by insurance.

I have never seen a patient report that the Clinic extends credit. (Indeed, Denise D. reported that she was cut off from her drugs unceremoniously while she was merely waiting for her bill.) Whether or not Elizabeth is on treatment at this time is important because a mere three weeks after the concert, Elizabeth apparently has a stroke and dies. The commentary in the news of her death is concerning:

Doctors believe she had a stroke. […] According to doctors, the tumor was an unrelated factor in Elizabeth’s death.

WHAT!?!? Listen, I don’t have enough information to say whether or not the ANP that Elizabeth was on caused a stroke. But it would not be the first time that a child had a stroke on this stuff. Haley S. had one. According to Haley’s account, the Burzynski Clinic’s response was evasive, self-serving and obtuse:

The Burzynski clinic doesn’t think it was their steroids or the antineoplastins that caused the brain volume loss, but the increased cranial pressure from the treatments. Basically, it wasn’t the medicine but the increased pressure caused by the medicine. Hope that makes sense to all of you.

It sure does. This stuff is potentially dangerous.

Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again. Find out about real clinical trials by visiting clinicaltrials.gov.

One comment

  1. Pingback: A Letter to the PBS Ombudsman About CPT12′s Airing “Burzynski” | Skeptical Humanities