Desperate times lead people to desperate measures. For patients suffering from terminal illnesses, they often turn to unconventional treatments or ways to skirt the system. Sometimes those treatments work. Sometimes they don’t.
My reading this week introduced me to patients who just wanted hope, companies that wanted to take advantage of that, and a broken system that has failed many. These stories were all written by Alan Zarembo for the Los Angeles Times. Up until now, I must confess, I had never heard of Zarembo. But I’m definitely glad I have now. Find out why.
Stem Cells
Right off the bat, Zarembo hooked me. The opening sentence of “A desperate injection of stem cells and hope” made me want to read on. “Alone at his computer, drool sliding down his chin, Tom Hill searched the Internet for anything that could save him,” Zarembo wrote. I wanted to keep reading because the vivid imagery intrigued me. I wanted to know why Tom Hill was searching and drooling. In the next several paragraphs, Zarembo reveals that Tom has amyotrophic lateral sclerosis, or ALS, a disease marked by the deterioration of the nervous system. It is incurable. At the point, we are introduced to Tom, he will do anything to find a cure, even shell out thousands of dollars for therapies that have no guarantees. He did just that.
BioMark International, a company touting its injectable stem cells as the cure for multiple diseases including ALS, attracted Hill. He found their website. Read their testimonials and information and was sold. The $21,000 price tag didn’t deter him. He was convinced it would work. His wife Valerie wasn’t so sure. Eventually, though, he received his first BioMark treatment, traveling all the way to Canada for it and managing to reduce the cost to $10,000 in exchange for a listing on Tom’s website.
Tom seemed to think the injection worked, swearing he could see an improvement. But by two months after his treatment his body continued to deteriorate, and he died on March 23, 2004.
This article left me very angry. How could a company pray on people in such vulnerable states? The answer of course was money, and, unfortunately, BioMark was not the only company who did this. Stem cells were (and still are) hot stuff. They continue to be a source of controversy politically while at the same time holding so much promise. One day stem cells could possibly cure diseases like ALS. At the moment, though, much more research needs to be done. Companies should be shut down. Even doing that won’t solve the problem.
The U.S. government did go after BioMark. The company’s solution though was to move its headquarters overseas and treat patients in Mexico. At the end of the piece, Zarembo shows a clinic in Tijuana, Mexico where hundreds of sick people travel to every year. They travel there with the hope that BioMark’s injections will save them. If companies like BioMark can evade the U.S. government by leaving the country, then what is the solution? How can we save the hundreds of sick from bogus treatments? Maybe there isn’t a solution. As long as people are terminally ill, many of them will do anything to get their life back, and companies looking to prey on them will lie in wait.
My anger continued to grow as I read Zarembo’s sidebar story “Outside the U.S., businesses run with unproved stem cell therapies.” This story revealed just how rampant the industry is. Clinics all over the world offer stem cell treatments to cure diseases. Doctors see patients nearly everywhere from the Ukraine to the Dominican Republica to China and Mexico. Even some of the scientists behind these treatments acknowledge they don’t know for sure if the stem cell injections work. Dr. Hongyun Huang, who was trained as a neurosurgeon in the U.S. but now runs a clinic in China, claims that his patients do see a difference. But others caution him, saying he is merely seeing the placebo affect amplified by his own hope or that he is just watching the normal patterns of disease. But despite the criticism, he still offers stem cell therapy, taking the patient’s money all the way to the bank.
Transplants
Zarembo also drew me in to “Death by geography,” which tells the stories of two people waiting for a liver transplant. Jonathan Van Vlack couldn’t remember his own name, because there were too many toxins in his blood from his failing liver. He was dying and needed a liver transplant badly. But he wasn’t sick enough to move to the top of the transplant list in New York, which has more than 2,000 people on it statewide. Jonathan died before he could get a liver.
Frank Evanac also lived in New York, and he was on the liver transplant list. He wasn’t quite as sick as Jonathan, but he had been on the list for four years. Frank also needed a new kidney. He decided he didn’t want to wait in New York any longer. Instead, he moved in with his sister in Florida where the transplant list was much shorter. He got his new liver and kidney just 14 days after he moved to Florida.
“Sometimes all that separates a wait of years from one of months is a line on a map,” wrote Zarembo in the piece. But how can this be possible? How can a patient in one area have a better chance of survival than another?
The U.S. transplant system divides the country into 58 territories. Each territory has its own transplant list(s), and organs that come into that territory are supposed to stay in that area even if there are sicker patients elsewhere. This has led to problems, because supply and demand are not the same in each territory. For example, in larger metropolitan areas the transplant list is much longer, and even though more organs would presumably come in many of those organs end up being unsuitable for transplant. This affects liver patients like Jonathan and Frank the most.
Clearly, there is a problem here. If patients at UC Davis can receive transplants while much sicker patients die just hours away in San Francisco, how can we call the system fair? Hundreds of people die every year while waiting for an organ. There must be some better way to do this. Though, I must confess that I have no idea what that better way is. Perhaps a reanalysis and redrawing of the territories would help.
China has a different approach to ensuring they get enough organs. Zarembo wrote at the end of the piece, “China executes several thousand prisoners a year with gun-shots to the head, then harvests their organs.” While obviously there are some ethical questions with that practice, the U.S. definitely should look at different ways to fix the current transplant system.