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Doug Oliver knows what it’s like to go blind and see again, so he wants others to have the same opportunity.
“I’m seeing very well and am likely to enjoy this vision for the remainder of my lifetime,” said Oliver, a 1980 Presque Isle High School graduate who was diagnosed with a rare form of blindness 11 years ago. “I want people to know that treatment options for blindness are here now.”
The degenerative disease, Malattia Leventinese, affects some 10,000 Americans, and it upended and reshaped Oliver’s life. He was working as a social services director in New Hampshire when he realized he was going blind, after he almost drove into four pedestrians in two different crosswalks one day. When he stopped driving in 2008 and gave up his job, he went from earning $90,000 to less than $30,000, working part-time at Walgreens and qualifying for Social Security Disability Income.
In 2010, he moved to Nashville, for its warmer climate, its public transit and an open position at a Walgreens, and he soon met his second wife Ann, who would also be his guide in blindness. But in February 2015, he learned of a privately-funded clinical trial for inherited retinal diseases that was aiming to restore sight using a person’s own stem cells, precursor cells that can develop into other cells and organs.
By August of last year, he had raised more than $21,000, and went to Florida for the procedure, which took stem cells from his bone marrow and injected them into his eyes, to try to regrow healthy retinal cells. Gradually over the course of two months, he returned to full vision.
“I have found that it’s almost as much an emotional adjustment to be regaining sight as to be losing it. My wife has never known me as a sighted person,” Oliver said.
“The most important thing to me is being able to see faces. I saw my grandchildren’s faces in South Portland. I can count the leaves on trees. I went to a grocery store after surgery when it was kicking in, and just looked at the prices. I walked around the aisles just looking at the price tags.”
He emerged from the surgery with his sight as well as a vision for the benefits of adult stem cell treatments, which in the U.S. are offered selectively through research trials as well as through private clinics that are not covered by insurance or even fully regulated.
The Food and Drug Administration has not approved any stem cell-based treatments, only therapies using umbilical cord-derived stem cells in treatment of blood cancers and genetic metabolic and immune disorders. Adult stem cells from a patient or a donor are used through bone marrow transplants in treating certain cancers and are considered surgical procedures — as are the outpatient stem cell treatments being promoted for a range of ailments without the support of long-term studies or FDA approval.
Recently the FDA has warned consumers about unapproved stem cell treatments and has also considered the possibility of declaring oversight of the procedures as biological products.
Although Oliver admits there are some for-profit clinics selling stem cell treatments that aren’t supported by research, he and other patient advocates are worried that if the FDA regulates stem cells as drugs, it will curtail their access.
He’s now trying to rally support for the REGROW Act, legislation co-sponsored by U.S. Senator Susan Collins that would create a new pathway for the FDA to approve regenerative medical treatments like stem cells. It would streamline the approval process and offer the opportunity for insurance coverage.
Oliver said he believes stem cells should have their own regulatory category. “The idea that cellular therapy can be regulated as drugs is not seen as possible because it’s totally unique.”
The FDA has for the time being withdrawn its proposal to consider regulations for stem cells, and the REGROW Act is now an amendment tacked onto a larger bill aimed at modernizing the workforce of the FDA and National Institutes of Health.
Oliver has successfully lobbied Tennessee Senator Lamar Alexander to support the new approval process, and as he approaches his first full summer of sight in more than a decade, he is considering his future. He’s thinking of returning to social services or starting an organization focusing on stem cell research and access.
Along with improving their quality of life, Oliver said he thinks stem cell treatments could help those with disabilities re-enter the workforce. Along with blindness, trials are currently underway examining the potential of stem cell treatments for paralysis and stroke damage.
“In stem cell research, it’s not a battle to be won,” Oliver said. “It’s a symphony to be played, and there is a lot still to be discovered.”
