Amid the debates around serious topics such as health care policy and the treatment of detained terrorists, I'd like to offer a perspective. Perhaps I should be more outraged by the so-called "Torture Memos" and the ongoing torture controversy in Washington. But I'm not. I can't stop wondering how Americans, who seem so concerned about the treatment of suspected terrorists, could allow eight years to pass while the Bush Administration prevented advancements in stem cell research. Those eight lost years were a devastating reversal of momentum for patients who suffer every day from deadly diseases - patients like my younger brother Johnny who hope stem cell science might offer them a more certain future.
Johnny, 23, has fought Non-Hodgkin's Lymphoma and Acute Lymphoblastic Leukemia for more than four years. Johnny is not a terrorist who plotted to kill Americans. He and millions like him - our brothers and sisters, sons and daughters - want peaceful lives, free of hospitals, medication and uncertainty. Before a tear is shed for detained terrorists, we owe our loved ones a firm commitment to alleviate their suffering with every scientific tool at our disposal. We must never again squander the potential to improve and save the lives of those who suffer from serious illnesses.
For four years, my family and I had a front-row seat to Johnny's unbelievable suffering, which makes the "Torture Memos" seem mild in comparison. Following his diagnosis the day after Christmas in 2004, Johnny underwent months of grueling chemotherapy. The drugs caused him to lose a significant amount of weight, vomit profusely, grow so weak that he could barely get out of bed and walk down the hall. He lost his hair, his eyes were sunken and he grew extremely pale and exhausted. Later that summer, he was admitted to the ICU at Stanford for a life-threatening case of shingles and a number of other serious complications. During the next 18 months, he endured maintenance chemotherapy. His attempts to return to the University of Michigan campus were foiled by constant hospitalizations with serious viruses and illnesses.
Three months after his hard-fought victory over Lymphoma, jaw pain led to a devastating relapse - Leukemia. Previous chemo treatments were deemed insufficient and he underwent new chemotherapy regiments and ultimately a bone marrow transplant. To receive his transplant, Johnny's immune system was brought "down to zero" and wiped out, which is a terrifying experience to endure both physically and mentally. Physically, he underwent powerful chemo treatments that amplified the suffering he experienced in his first chemotherapy regiments. Mentally, he had to deal with the reality that if his transplant was not successful, he would be without an immune system and unable to survive. Would the transplant be a perfect match? How would it react to his body? How would his body react to the new immune system? A common cold could be lethal. The first days and weeks would be critical to determine survival. And so forth and so on.
Through it all, Johnny survived round after round of horrendous chemo treatments, countless medications, successive steroid treatments, numerous illnesses and pneumonia. Recently, following his final exams at Michigan, he ended up in the hospital again, sick with a potentially severe case of pneumonia and possible lung damage. More than a year after his bone marrow transplant and four years after his initial diagnosis, the suffering continues. While there is no doubt in my mind he will survive this horrific period in his life, his future is mired in uncertainty, haunted by the fear of a relapse.
Johnny deserves a more certain future. While it is not government's job to cure his illness, it is the responsibility of government to get out of the way and let others do so. The Obama Administration's policy reversal is clearly welcomed. But Americans must go further and summon the courage to take on the hypocrisy of the "pro life" movement that stymied eight years of science - science that promises a brighter future for my brother and millions more Americans who are not threats to national security. It is their well being we should strive to protect before all others.
Impassioned views to the contrary are not without merit. But before you profess such opinions, try walking in Johnny's shoes. Take the elevator to "11 Long", which is the bone marrow transplant ward at UCSF Medical Center. Notice the masked patients who shuffle the hallways endlessly with their IV stations, desperate to gain the strength to be able to go home. Watch the suffering in their eyes and in the hearts of their families and loved ones. Listen to the IV drip machines beeping throughout the night. Notice little kids with bald heads, deep set eyes and uncertain futures. And then tell me that the smell of chemotherapy doesn't sicken you.
While Americans spend the summer wondering how we could have treated terrorists more humanely, my brother's struggle with his illness continues. Eight years of possibility were squandered and I'm tired of watching him suffer.
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