In Oct 1994, Cody’s parents, Dawna and David, noticed that Cody was developing a lazy eye and was losing control of his left side. An MRI discovered a tumor on his brain stem. (At this point, honestly, I feel like these stories are following a script.) He had 3 weeks of chemotherapy and radiation treatment. Around Thanksgiving, a friend told them about Burzynski’s Clinic.
Cody’s story came to light on 1 Dec 1994, after residents raised $15,000 for the Burzynski Clinic. They were clearly warned about his reputation, which is, according to the article, that of a “clown” and “kook.”
A perplexing statement in that article comes from a local philanthropist who started raising money for the trip:
When local philanthropist Kostas Kalogeropoulos, founder of Dream Come True charity, heard about the possible cure for Cody, he held a press conference on Thanksgiving Day and made an impassioned plea for money to help pay for the expensive therapy.
“Even if this doctor is a kook, at least he’s giving the family hope,” Kalogeropoulos said Tuesday night when told about the controversy surrounding the Burzynski Clinic.
This is bad thinking. False hope is “doing harm,” in my opinion.
I give the paper credit for actually seeking out comment about this story:
It’s false hope, said Saul Green, a biochemist and retired cancer researcher in New York. Green wrote a lengthy article in the Journal of the American Medical Association in June 1992, blasting Dr. Burzynski’s cancer treatments.
“I found no reason to believe his therapy works or even why it would work,” Green said yesterday. “If this family is religious, I would recommend they go to church. They’ll find more hope there.”
The trials manager at the Burzynski Clinic, possibly the worst trials manager in the world, given his lab’s results (no published peer reviewed papers demonstrating efficacy in a journal worth sneezing at), gives a typically flaccid defense, invoking the appeal to novelty and a conspiracy theory:
Burzynski was not available for commment yesterday, but Dean Mouscher, the clinical trials director at the clinic, said Green’s article is “full of lies and distortions.” He said the therapy has saved several children.
“This is a case of the old against the new. The medical establishment is against this dramatically new treatment,” Mouscher said. “The drug isn’t going to hurt Cody, and it may help. It has helped others.”
Of course the clinic is, at the same time, administering ANP as a treatment for HIV.
The expenses that will accrue for the family are really remarkable, especially given how much ANP costs to manufacture:
The therapy can cost as much as $685 a day. The Michaels family said it’s running them about $10,000 a month and their insurance only recently started to pay for some of it. But the medicine isn’t the only cost. Patients must purchase their own catheter, IV equipment and pumps and pay for all blood and urine tests, X-rays, CT scans, housing, transportation and meals.
Green criticized the cost in his article, saying the chemicals that make up the drug canbe purchased “from any chemical supply house for about 9 cents a gram.” (emphasis added)
Three days later, the paper announces that Cody will be getting the treatment after all. The horrible bind that the parents have been put in is clear, further illustrating why only the highest ethical standards are acceptable when experimenting on cancer patients:
“We have no choice. We either take him there or sit back and watch him go and we don’t want to do that,” said David [G].
About two weeks later, we hear that Cody and his mother go down to Houston to learn how to administer the treatment, while David stays with Cody’s sister. By this time, the community back home has raised some $30,000 for Burzynski’s treatment.
On the February 1st, we hear that SAME DAMNED STORY AGAIN! That the tumor is “breaking up on the inside,” which the family apparently believes is a good thing:
Cody [G]’s brain tumor appears to be deteriorating.
The 4-year-old Pennsville boy has been receiving an experimental cancer treatment in Houston. After two visits to the Burzynski Clinic, and around-the-clock treatment for almost six weeks, his parents say a recent MRI shows the tumor has not grown and its core appears to be breaking up.
“We want to thank everyone in the Lehigh Valley for giving Cody the chance he needs to fight this,” said Cody’s mother, Dawna.
The Gerharts held a news conference yesterday at the Sheraton Inn Jetport. Cody, dressed in purple Batman sweat pants, wobbled out to the crowd and gestured for his father, David, to hold him. Cody has limited movement on his left side because the treatment sometimes causes the tumor to swell, putting pressure on his brain stem, his parents said.
The boy is partially paralyzed and unsteady on his feet, and yet the parents who want to believe still see him as improving. It is positively unbelievable that an ethical humane physician would let the family leave their clinic not understanding the implication. To do so is unfathomably cruel, since the pattern of a tumor dying on the inside is more likely to be a sign that the tumor has outgrown its blood supply than it is of a treatment working. It turns out that an MRI in March confirmed that the tumor was in fact growing.
Cody celebrated his 5th birthday that March, but on April 20th, news breaks that Cody had breathing problems and was rushed to the hospital.
“When we got him to the hospital we tried to stabilize his breathing,” said Donald [G], Cody’s grandfather. “The theory is that the tumor is affecting his condition right now.”
This is not progress, and the parents are baffled, as you might expect, as they believed that things were improving:
“In the beginning, he responded really well to his treatment,” Gerhart said.
That seems unlikely.
On May 19th, Cody’s story was on Nightline, but at this point, Cody is dying in hospice and off the ANP, which was clearly useless, costly burden:
Cody received several treatments at the clinic. “Nightline” interviewed Cody and his family at their home several weeks ago about their experience with the clinic.
Cody recently discontinued treatments after doctors at the clinic told the [G family] the treatment would not help Cody. Cody’s condition is deteriorating. He’s at home, under Hospice care, said his grandfather, Donald [G].
A further complication to this story is something that the grandfather reports:
Nevertheless, the family believes in the treatment’s ability to cure cancer.
“They said Cody’s tumor wasn’t cancer and that’s why they couldn’t cure it,” [Donald] said.
The implications of this are nothing but damning for the Burzynski Clinic. What was all that talk earlier about the tumor “clearing up” and “breaking down on the inside” because of the miraculous ANP if the cancer wasn’t cancer? Or, as all evidence suggests in this case, does ANP simply not work on cancer? I would suggest that the family and media who covered this family, missed some important red flags about what was really going on here.
This must end. This was almost 20 years ago. Just a few weeks ago, a family whose beautiful daughter has a similar tumor was told by the same Clinic that the same pattern of necrosis in her tumor was a good sign. This relentless cycle must end. These patients need to be protected.