*An appeal to encourage Congress to investigate this follows Keiths’s story*
In January 2007, 29-year old Keith G. started having serious headaches and vomiting. A CT scan of his head showed a large mass. He had emergency surgery, and a week later was diagnosed with a malignant brain tumor, a glioblastoma multiforme, this only 3 months after his brother was diagnosed with a brain tumor. Several surgeries, courses of chemotherapy, and radiotherapy allowed him to fight off the tumor for a couple of years. He married in May 2008. In March 2010, a scan showed that the cancer was back, and this led to more surgery in April. This time the tumor came back very rapidly, was removed again in September, and was found to be grade 4. They started a variety of oral and IV chemotherapies, but Keith’s wife was looking for other options, as the chemo made Keith very tired. In fact, the family was already looking at the Burzynski movie by 15 June. By August 2011, Keith was well along the road to the Burzynski Clinic.
After they arrived in Houston, Keith and his wife found that their insurance company did not cover antineoplastons (they almost never are because the treatments are unproved and unpromising). As his wife explained in the Limerick Post:
“Treatment is very expensive here as all medical treatment in the US, but we can’t let that stop us.”
This is not the first time that we’ve seen this when folks come to see Burzynski from abroad. The mother of Luna P. said this as well, that treatment in the US is always expensive. But there are compounding issues at play here. First, the expensive chemotherapies are for treatments known to have a chance of working. Second, when people here see that their week at the hospital cost $200,000, they don’t often realize that the hospital only expects to recoup a fraction of what they submit to the insurance company, so they ask for a lot. Patients who are self-pay often get a self-pay price for their care, which is more in line with the market value of the treatment.
Another interesting comment from Keith’s wife in that article:
“It is gene targeted treatment that has seen very good results on brain tumors. It is not a form of chemotherapy and is non toxic.”
This is simply false in every particular. Burzynski has never been able to finish and publish a trial that would give him anything like a cure rate. And it seems like he never will, since a recent FDA inspection of his trials revealed a host of colossal, inexcusable, and profoundly damning deficiencies in the trials, from inflated outcomes in 66% of the patient records examined to all baseline measurements destroyed. You can read about this unthinkable list of violations at the Burzynski Clinic at USA Today and links to the primary documents at thehoustoncancerquack.com. The 3-page list of known toxicities from Burzynski’s own patient consent forms includes:
- severe or life-threatening increased sodium concentration in blood;
- risk of death;
- difficulty arousing;
- severe or life-threatening low potassium concentration in the blood;
- decreased levels of consciousness;
- upset stomach;
- low platelet numbers requiring transfusions;
- severe fatigue interfering with activities of daily living;
- fever greater than 104F;
- frequent urination at a rate of urination at least once every hour of more often or a requirement for a catheter;
- liver toxicity;
- irregular heartbeat;
- decreased white blood cell count;
- slurred speech.
On September 17, “The K Project,” a fundraising campaign for Keith’s treatment, is set in motion.
On September 20, 2011, Keith’s wife sends a note to concerned family back home in Ireland:
… Keith is on a combination of oral drugs at the moment & if a positive response is seen then he will probably be put on to an iv drug called Antioneoplastons. After approx 2 weeks on this he will be allowed to go home where he will continue treatment. Everyone in the clinic are lovely. They are pretty busy & have alot of foreign patients. If anyone is interested there is a movie that some of ye might find good. It’s called. ‘burzynski the movie’ on u-tube. Just look for the full length version.
So I will keep ye all up to date with what is happening over here.
On the fundraiser’s twitter feed, we hear:
After a few days rest K is back into the Texas Clinic today. He is pretty tired but is in good form. He thanks everyone for their support
Sadly, the movie that they are referring to is profoundly misleading, and it is clear that the filmmaker does not understand the patient records that he included, as they demonstrate that the tumor sizes are unrelated to dose or time on treatment. This means that, regardless of the outcome, the antineoplastons are likely not having any therapeutic effect. Most viewers won’t know how to read these files, and it will leave them with a badly flawed perception of their prospects at the clinic.
On September 20th, we get an update:
We really never expected anything like this but it really takes a lot of pressure off us as medical treatment in the US is very expensive & we found out just when we got here our insurance company would not support Keith. So this will be a great help towards his treatment. We have been in Houston now 3 weeks. We originally thought we would be here for 4 weeks maximum but it now seems we could be here for another 4 weeks but we really are unsure about this.
On September 27th, we get a pair of tweets:
Ks had a hard few days and has been pushed to the limit on a massive collection of Meds. However he is in good form and looking ahead.
After a recent MRI we now know there has been no tumor regrowth and its the same as the last scan a few months ago. This is a good thing too
On October 2, the twitter feed reports that Keith has low phosphorous levels, but they are back to normal on the 4th.
By October 6th, the K project has raised 7,000 euros for Burzynski’s treatment and on the next day, friends back home have a huge fundraiser for Keith and his wife. The next morning, the account is up to 12,000 euros. In all, about 10,000 euros were raised on a single night. But on the 8th we also hear that Keith is having seizures and that his Keppra is being upped. On the 11th, they announce that he will be seeing a neurologist about the seizures.
The family is still in Houston on 19 October, it seems, and his story appears in the Western People newspaper. At this point 18,000 euros have been raised for Burzynski. Irresponsibly, the journalist says that Burzynski has “a remarkable success rate, especially among young cancer victims who have suffered miracle-type cures under his care.” James Laffey, if you are going to announce miracles, by god make for damned sure that the miracle healer doesn’t end up on the front page of the USA Today exposed as a quack in front of the world before you commend him uncritically to other desperate people.
In late October, we hear in the Connaught Telegraph:
Keith and his wife Brenda have to travel to Texas about three times during each year of treatment and are currently there receiving the first stage. Meanwhile, back home a number of fundraising events are kicking into gear over the coming weeks.
The total cost will be about €75,000. A huge number of events are set up to meet this goal.
The family arrives back in Ireland on the 22nd of October. Four days later, Keith is suffering from a chest infection at the site of the port that he had installed to receive the antineoplastons. This is a known, frequent adverse event associated with antineoplaston treatment. On the 27th, in the Galway Advertiser, his sister notes:
“Keith has been very weak and having frequent seizures but these are now being brought under control. He had an MRI scan not so long ago and it showed no change. This is not a bad thing as his tumour is very very aggressive and the fact it hasn’t grown more is good news in itself as he has been off chemotherapy for nearly three months now.”
“On his return from America, Keith developed further complications and his health deteriorated rapidly in recent weeks. He passed away on Friday surrounded by family and friends.”
There is nothing in the public record to suggest that for all the hard work and fundraising by Keith and his friends that Burzynski’s treatment did anything more than give poor Keith an infection.
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 and warning letters–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.