Emily Lori Cameron is in a race against time.
The former nurse, who suffers from multiple sclerosis, believes her best shot at avoiding a future in which she is blind and confined to a wheelchair is an experimental stem-cell transplant.
But if she can't get it soon, it may be too late to do any good.
Cameron, who hasn't been able to work since 2007 because of the debilitating nature of MS, has lined up 80 percent of the funding for the $200,000 procedure from the federal government through Medicare—but she still needs to find somewhere in the neighborhood of $40,000.
Because she has qualified for AHCCCS, the state's Medicaid program, she was hoping Arizona would pick up the rest of the tab—but the Arizona Legislature's decision to cut funding for transplants has eliminated that possibility.
And Cameron, 42, is facing a deadline: She has to undergo the hematopoietic stem-cell transplant before the disease progresses too far.
"You can't be too disabled, or else you can't get it," Cameron says. "I'm right on that edge."
Unlike other AHCCCS patients who have made the news recently because funding for their transplants has been denied, Cameron had yet to be approved for a transplant. And it's possible, because of the experimental nature of the stem-cell procedure, that the state would have balked at paying for it anyway, says Rep. Matt Heinz, a Democrat who represents Tucson's southside.
But Heinz, who works as an emergency-room doctor, argues that the state's policy should mirror the federal Medicare policy, so that if Medicare approves a procedure (as it has in Cameron's case), the state should follow suit.
Stem-cell transplants are a promising new treatment for MS, a disease that wreaks havoc with the nervous system as the immune system begins to attack the nerves that transmit signals throughout the body. Patients with MS suffer from numbness, tingling and pain; they can eventually lose the ability to walk and have trouble with their vision.
"Basically, your body is destroying itself," Cameron says. "Your body is destroying your nerve cells in your spinal cord and your brain, so it impacts your mobility; it impacts your vision; it impacts your cognitive thinking."
That meant Cameron, who worked on and off as a nurse for more than two decades, had to give up her career three years ago, because she never knew what kind of shape she'd be in from one day to the next.
"Sometimes, you wake up and can only see out of one eye," she says. "Other times, you wake up, and you feel like there's a gray film across both eyes. The numbness, tingling and pain—that's just there. You kind of take that for granted."
Cameron says her best shot at stopping the disease's progress is a stem-cell transplant. The procedure uses chemotherapy to basically kill off the body's immune system and uses stem cells drawn from the patient's blood to reboot it, with the hope that the immune system will stop attacking the nervous system. Relatively few people have undergone the transplant, but studies show promising results.
"The studies to date show that it does seem to slow the number of attacks," says Dr. James Bowen, a Seattle-area doctor who has been conducting the procedure with MS patients. "It does not cure the disease. There are patients who still have attacks and get worse. But remarkably, it slows down the number of attacks for most people."
Cameron says she has reason to believe the stem-cell transplant would help stop the disease from further damaging her body. Her twin sister underwent the procedure a year ago and has, at least so far, halted the progression of the disease.
With state funding out of the picture, Cameron is now trying to raise private contributions for the procedure through an online site. She's also hoping to do an auction to raise funds, as her sister did.
But the clock is ticking. If she becomes too disabled before the transplant, she knows the damage may be irreversible.
"That will be really crushing if it happens," Cameron says. "To know that you could save yourself but not be able to, and then knowing that you're doomed to life being in a wheelchair, blind, you can't take care of yourself—that's what I'm trying to stop from happening."
