Formerly Blind Nashville Man Helps Legislators Usher in a New Frontier in Medicine
Hooray for Doug who has really been paying it forward working for patients who want the right to use their own stem cells. I love that he gave his white cane to Senator Alexander.
BY AMY ESKIND
FEBRUARY 1, 2017
When Doug Oliver nearly crashed into two pedestrians on a crosswalk, and then turned the corner and nearly hit another, a police officer stopped him. In the passenger seat was Oliver’s hysterical wife. Oliver clearly hadn’t seen the pedestrians at all. The officer gave him two choices: go to the eye doctor or hand over your license. He chose the former.
“The doctor wrote in my chart in great big letters, ‘NO MORE DRIVING’ ” Oliver tells PEOPLE of the 2007 incident. “At 45, I was legally blind. I went into shock.”
A rare genetic form of Macular Degeneration, a diagnosis he’d received 13 years prior, before symptoms occurred, had now caused blind spots in his central vision and robbed him of his peripheral vision. There is no approved treatment. He lost his job as a computer programmer in rural New Hampshire and his marriage failed.
Oliver moved to Nashville to retire and live out his years on disability payments. He met Ann Coble, who teaches theology, on an online dating site and scheduled a ride with a public transit service for the disabled to meet her for dinner. Despite watching him fall off the curb and the fact that he could barely read and could only see the features on half of her face, the couple married four years ago.
A constant search for research studies on clinicaltrials.gov eventually landed Oliver in the Stem Cell Ophthalmology Treatment Study (SCOTS), with Dr. Jeffrey Weiss and Dr. Steven Levy in Coconut Creek, Florida. Since 2013, the retinal surgeons have treated 400 patients suffering from 47 different optic nerve and retinal conditions, all of whom had exhausted every other treatment available to them. More than 400 patients have participated and 60 percent have improved, Levy says. For some conditions, the success rate has been 89 percent.
“I spoke with my own retinal specialist and asked what the chances were that a treatment or cure would come in time for me to enjoy it,” Oliver says. “He said the chance was zero.” Oliver knew the Food and Drug Administration (FDA) did not consider the stem cell therapy a proven treatment, but he was willing to take the risk.
In August 2015 — in just over an hour — an orthopedic surgeon extracted Oliver’s bone marrow from his hip with a needle, a machine separated out the stem cells and Weiss injected the stem cells into both retinas. The very next day, his peripheral vision was restored, and as Ann drove him to the doctor, he giddily reported that he could see her pulling her hair back.
He and the clinic technician both cried when Oliver excelled at an Amsler Grid Macular Degeneration vision test. By December, he could see well enough to drive, though he had to learn to drive again with a learner’s permit first since he hadn’t been behind the wheel in 10 years. “I can read, I can run, I can fix things around the house,” he says. The ability to see people’s lips when they talk has also improved his hearing.
Though he has some lingering blind spots, “My vision is restored to the level I had 20 years ago,” he says. While the stem cells are his own, eliminating the possibility of rejection, they do have his DNA with the hereditary disease, so in a number of years his vision may deteriorate again. “This is a treatment, not a cure,” he says. He no longer wears embarrassing custom prism and telescopic glasses, but for distance and reading he continues to need “regular glasses,” he says.
Oliver spent $21,000 for treatment, raising some of the money with a GoFundMe campaign. He also spent some $4,000 for travel to get to the doctors and stay in Florida for the week. He has now set up Regenerative Outcomes Foundation to assist other people with ancillary expenses.
Tennessee Senator Lamar Alexander was taken with Oliver’s story and invited him to Washington, D.C., to address staff on the Senate Health Committee and meet with members of Congress as they worked on new legislation. Particularly important to patients was a faster FDA process so that these potential treatments and cures will be covered by health insurance.
As President Obama prepared to leave the White House, he signed the $6.3 billion 21st Century Cures Act in December, spurring game-changing medical breakthroughs, including the stem cell treatment that Oliver received as well as improved treatments and outright cures for cancer, Alzheimer’s disease, precision medicine and regenerative medicine.
Cutting edge researchers across the country already report some success in trials. Advances in imaging technology are a great asset to Dr. Jeffrey Cummings at the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, as he can now detect the Alzheimer’s protein in the brain before symptoms occur. “We hope we can keep them functioning at a normal level and they will never develop symptoms,” he says.
Parents of young children diagnosed with autism and cerebral palsy who banked their children’s cord blood have been participating in preliminary but promising studies by Dr. Joanne Kurtzberg at Duke University. Given one 15-minute infusion followed by fluid, more than 70 percent of children in the autism study showed improvement. Children with cerebral palsy who could only walk with a walker or couldn’t walk at all are walking on their own a year or two after the treatment. “We do have a lot of very grateful parents,” Kurtzberg says.
Heart failure patients have seen significant improvement in a study at Texas Heart Institute where healthy adult donor stem cells are injected into a patient’s left ventricle to induce the heart muscle to repair itself. “This has the potential to be transformative for those with the most severe coronary heart disease and heart failure,” says Dr. Emerson C. Perin.
Hope is high for millions more patients and their families. Passage of the Cures Act was a rare bipartisan effort that made strange bedfellows of Republicans, including Senate Majority Leader Mitch McConnell, who is a polio survivor, and Democrats, headed by then-Vice President Joe Biden, who lost his oldest son Beau to brain cancer at age 46 in 2015. Oliver says legislators, who voted nearly unanimously in favor of the bill, kept asking the same question: Could their own family members be helped?
At a celebration of the law’s passage, Oliver proudly presented Sen. Alexander with his white cane. “I don’t need it any more,” he says.
First treatment in 2007. Pioneering ever since.