Perhaps this isn’t the topic of most lively college conversations over lunch, but when your politically active 19-year-old brother, Keith, a C4 quadriplegic resulting from a 2009 diving accident, is fighting for the success and continued funding for human embryonic stem cell research, you become emotionally involved.
Many profound lifestyle changes have occurred since Keith’s neck injury, but that hasn’t stopped him from serving his cause. Local newspapers have written about him and his achievements. He has made his voice heard in Albany; he met with state senators to fight against the reallocation of funds set aside for stem cell research. Keith has become a skilled researcher, for his own education and as a research advocate. He even used voice activation to earn a college degree.
Keith concluded a recent spinal cord injury research paper with: “For those of us waiting for the researchers and scientists to go on with their trial and error experiments, we hold the very sincere belief that embryonic stem cells provide the missing piece of the puzzle to finally finding a way to release the ceaselessness of paralysis.”
It’s important to understand that embryonic stem cells have the ability to truly help people, now and in the future. Stem cells can be transformed into any of over 200 different cell types of the body. They cannot only aid those affected by spinal cord injuries like my brother, but are also currently being used in research for many other illnesses like Parkinson’s, Huntington’s, Multiple Sclerosis, ALS, stroke, heart disease, cancer, Alzheimer’s and more.
Progress with research is slow, but there is some positive movement.
At the moment, and after much waiting, many hurdles and careful applications for funding, the Phase I step of a spinal cord injury embryonic stem cell trial is underway. This is exactly the kind of treatment that my brother needs.
Phase I trials test the safety of treatments with acutely injured patients. There are four phases of trial research, each with an increasing number of subjects as results show a positive trend. Each phase can take months or sometimes years to complete before that treatment may be accepted by the FDA.
My brother is one of 1.275 million people living with a spinal cord injury in the United States and this is only a portion of the 6 million Americans living with some sort of paralysis, according to the Dana and Christopher Reeve Foundation. For my brother and my family, others who suffer and the medical community at large, we know this to be an incredibly hopeful breakthrough that is changing the face of medicine.
The crawl of trial research is naturally slow; no form of medicine or treatment should be used without significant testing. The problem, though, is that unlike many forms of FDA clinical trials, embryonic stem cell research is subject to political winds. To quote Keith, “federal funding has been in constant political limbo.”
At least one consequence of anti-research fanaticism leaves me scratching my head.
Each year, more than 400,000 embryos are discarded in the United States from in vitro fertilization clinics, according to a report from the Stem Cell Action Coalition. These embryos have been frozen at their five-day stage of development, where gestation and maturity has not begun because they have not been implanted into a uterus. They do not have the opportunity to be put toward the important work that ultimately allow for clinical trials to take place.
Is it a genuinely pro-life position to say that, instead of using these embryos for humane research to benefit the lives of millions of struggling people, it’s OK to discard those thousands of embryos annually?
Setting aside the obvious instances of waste, controversy over the destruction of potential life is ongoing. But to try to understand better, you need to step away from the Washington debates and try to see from the perspective of those fighting for this cause. Imagine Keith having to watch some right-wing fanatic on CSPAN telling the world that the very treatment he needs is morally repugnant.
When research resistance arises, I can’t help but think: Is our well-being becoming less important as our medical abilities grow more advanced? Are political preoccupation, stubbornness and religion getting in the way of significantly improving and saving the lives of countless people? For myself, the answer is yes. It should be unlawful to deny individuals the opportunity for potential treatment.
I received an e-mail earlier this year that aimed to spread awareness of a situation in Oklahoma. The state’s legislature was pushing for a bill to make human embryonic stem cell research a criminal misdemeanor based on pro-life beliefs. Unfortunately on March 17, this bill was passed 86-8, which would also not allow embryos to be bought, sold or transferred. The bill’s future now lies in the Senate.
Virginia seeks to pass a similar law and in 2010 a congressman sought, but did not ultimately succeed, to end Obama’s lift of the Bush administration’s ban of federal funding for embryonic stem cell research. Other states, like New York, were in a good position as far as research funding goes, although recently proponents here have met some resistance, but the question for me will always remain, why would anyone try to hinder something that is breaking medical boundaries and has the realistic potential to change lives?
If you would like to know more, e-mail Keith Gurgui at kgurgui@hotmail.com. For a seminal take on the ethics of embryonic stem cell research, reference the book “The Morality of Embryo Use” by Louis M. Guenin. If you are interested in learning more about those affected by spinal cord injury, visit the Christopher & Dana Reeve Foundation website, www.christopherreeve.org.