British businessman Peter Sartorius has devised his own treatment regime for prostate cancer. Every day, he drinks a salty cocktail, a mixture of water and an experimental drug called DCA he orders over the Internet.
Jim, a retired handyman in Louisiana, has lung cancer, and has been told that he has only a few months left to live. He swallows homemade capsules filled with DCA that his son, Jason, puts together.
Both men started self-medicating this spring after University of Alberta researchers announced that DCA (dichloroacetate) dramatically shrank tumours in rats without damaging healthy cells. But the Edmonton team was having trouble finding money to see if DCA works in humans.
DCA already has been in use for a long time to treat rare metabolic disorders, so it can't be patented as a new drug. And without a patent even a wonder drug won't make huge profits – major pharmaceutical companies won't invest the hundreds of millions of dollars required to test it and bring it to market.
Dr. Evangelos Michelakis, the principal investigator, has urged patients to wait for valid results, warning that they could poison themselves by taking DCA ordered over the Internet. The University of Alberta so far has raised more than $200,000 toward a small, initial clinical trial.
But from Liverpool to Louisiana, people with cancer say they can't afford to wait.
They are experimenting on themselves, ordering DCA, sharing their results on a website and putting together a database in an attempt to figure out if it is working.
Their do-it-yourself approach illustrates the Internet's growing power to help patients circumvent – and perhaps undermine – traditional medical research on drugs. The Edmonton scientists have warned that by taking it on their own, patients are jeopardizing the chances of a real clinical trial ever taking place: What if anecdotal reports spread that DCA doesn't work, or makes people sicker?
“It's destroying the efforts to do this right,” Dr. Michelakis recently told the science journal Nature.
He is so opposed to patients dosing themselves that he would not be interviewed for this story, because it includes interviews with people who are taking the drug.
The testing of DCA is now proceeding along two very different paths: There is the official scientific approach, which will take years and depends on finding the necessary millions in funding.
Then there are the hundreds of cancer patients, including many in the final stages of the disease, who are experimenting on themselves and sharing their stories on the Internet.
Both camps are seeking the answer to the same question: Is DCA a miracle drug?
The holy grail?
DCA challenges one of the fundamental premises of cancer biology: that mitochondria are permanently damaged by cancer. Mitochondria are energy factories, but their other job is to order cells with damaged DNA to kill themselves.
Cancerous cells don't obey that command; they just keep reproducing, and it's this out-of-control growth that leads to tumours and other forms of the disease.
What DCA seems to do is to reactivate the mitochondria in cancer cells, causing them to commit suicide.
This is different from conventional chemotherapy, which destroys fast-growing cells and can cause serious side effects, including nausea, hair loss and damage to the immune system.
Targeted drugs – which kill only cancerous cells – offer hope of a better way to fight cancer. But the few now on the market or in development work in only one or two kinds of cancer.
Since all cancer cells have damaged mitochrondria, DCA may be effective against many forms of the disease.
“This is the holy grail of cancer therapeutics – how to kill cancer cells and spare normal ones,” Dr. Michelakis said in January.
“One of the big concerns about drugs is that they can harm people, but we already know this drug is safe. It doesn't even affect normal cells,” he said.
DCA's safety record is established from years of its use for unusual inherited metabolic disorders such as lactic acidosis, in which lactic acid builds up in the bloodstream.
