Fights worth fighting – Fight for sight.
Dr. Brian Boxer Wachler’s Keratoconus TEDx Talk Transcribed
Let’s go back to one night in 2007. I opened the door to my house and I see my twin daughters smiling and greeting me with “Dada, dada.” As I bend down to hug them I’m fighting back tears. What I’d just been through before I came home, it’s almost too much for me to handle. You see I had just given the biggest scientific talk of my life in front of 500 plus doctors, eye surgeons just like me.
I had a breakthrough procedure that had a 99 percent success rate and often rendered and invasive risky surgery unnecessary. Naively, perhaps, I expected a standing ovation like you see in the movies; instead I heard whispers and a few half-hearted claps. I was confused and deflated. In the coming days and years I would be skinned alive by many other eye surgeons because I rocked the boat.
That’s me as a kid. I wore glasses and soon had the bullies calling me “four eyes,” and you can see why. My mom and dad advised me of an ancient Chinese proverb about sticks and stones may break your bones, but names will never harm you. Okay, it’s not a Chinese proverb, but I’m sure it’s been around long enough to be one.
And they also advised me that if any bully got physical with me that I had a right to defend myself, but I never thought that years later, as a doctor, I’d still be fighting bullies to save my own professional reputation as I was saving patients’ eyesight. Keratoconus is a degenerative disease of the cornea, which is the outer lens or windshield of the eye and it bulges out uncontrollably due to weakened collagen fibers.
So it’s like having a hernia in your groin, but it’s in your eye. It occurs in 1 in 500 people and that’s a 400 percent increase than in the past. So a number of you watching have Keratoconus or don’t yet know you have it. It causes a tremendous amount of distortions in vision such as multiple images and severe glare and halos at night that can make night driving impossible. It can rob people of the ability to lead a normal life.
Twelve years ago the traditional treatments for Keratoconus were, one, hard contact lenses that could feel like shards of glass in your eye or, two, an invasive and painful cornea transplant from a cadaver that could take 6 to 12 months to recover from and has some serious risks including blindness. Based on the work of Professor Theo Seiler in Germany, my team and I developed a breakthrough procedure; we called it C3-R® , which stands for Cornea Collagen Crosslinking with Riboflavin. It’s a 30 minute outpatient procedure that uses special vitamin applications combined with a special type of light that strengthens the cornea and stops Keratoconus from progressing; and, best of all, it’s just a one day recovery. So for the first time in history we could non-invasively prevent people from having corneal transplants. It was a breakthrough.
I want to tell you a story about my first C3-R® patient. He’s a very famous Hollywood movie producer and you’ve all heard of his films and the stars who are in them, and he was losing vision from Keratoconus. I had at the time figured out C3-R®, but I had not performed it on anybody yet, so I had the very open discussion with him and told him that he would be the first. In the end he trusted me and gave me the thumbs up and said, “Let’s do it!”
So I performed the procedure and everything went perfectly. I was so excited. I felt like running all over the streets of Los Angeles just shouting about what we had done; thankfully I restrained myself because in the past what had been increasing amounts of cornea steepening and increasing astigmatism was now this flat line of stability and that’s why I was so excited, but I knew we needed more treatments for the medical community to accept C3-R®, so I continued to treat patients.
Eventually I submitted a paper with our results to a major ophthalmology symposium and it was accepted. I delivered my talk in front of 500 plus eye surgeons and it went great; I was elated, but instead of a standing ovation, it was mostly silence that I heard. It sucked all the joy right out of me just like a balloon being deflated.
And even worse, when I got off the podium, I had doctors coming right up to my face saying, “There’s no way you can stop Keratoconus from progressing,” or “I don’t believe your data,” or “Brian, you should just keep doing corneal transplants; there’s nothing wrong with them.” That was painful.
At the next meeting I presented at there was a similar reactions and soon I realized this was no fluke; this was the pattern, but I refused to give up. I believed in myself, in my procedure. Then these doctors started spreading lies saying C3-R® doesn’t work, it’s a gimmick. They also spread the lie that C3-R® was illegal and that I should be put in jail and they were spreading this to doctors nationwide and to patients trying to discourage them from flying in to have C3-R®. I was completely shocked. This was the last thing in the world that I thought would happen.
Well, the medical establishment, I realized, was trying to crush and destroy me and C3-R®. It prompted investigations by ophthalmology and regularly organizations, and even though I was cleared of any wrongdoing, that didn’t stop the lynch mob. I felt massively stressed on a daily basis. Over my career I had published 49 articles and peer reviewed medical journals. I had delivered 244 talks at scientific meetings, but now, overnight, I wasn’t being invited to speak anymore. The phone stopped ringing to be interviewed by the trade journals. I felt alone and totally abandoned by the field that I had given so much to over my 20 year career.
I felt like I was living two alternate realities. During the week I was seeing patients with these amazing results, but then at weekend conferences I didn’t know if a doctor was going to come up to me and congratulate me or spit on me or take a swing at me. You hear about conspiracy theories? Well I’m here to tell you this is true. One night things got so bad I didn’t think I could take it anymore; the stress of my inner struggle was just tearing me apart. I spoke to my wife, Selina, about the solution; giving up C3-R®. I knew if I did, I could go back to that safe, comfortable practice that I had before C3-R® and I would be back in the club again, but on the other hand, I saw C3-R® was saving patients from corneal transplants; it was hugely successful.
Selina and I talked for many hours into the middle of the night and we finally decided that if I would sacrifice my professional reputation in the name of helping patients, I would accept that trade off because I became a doctor to heal. So I put on earmuffs and I forged ahead with C3-R® because I refused to give up, I believed in myself and my procedure.
And this reminds me of this famous poem by Robert Frost, when I came to the fork in the road, I chose the path less traveled because I believed in myself, I believed in our results and it was the right thing to do for patients. Still, I had taken a risk and now I was being forced to pay a price and I just didn’t get it. The procedure had a 99.3 percent success rate, yet I’m being constantly attacked. Then it finally hit me like lightening; C3-R® was directly threatening the incomes of those eye surgeons who were performing corneal transplants for Keratoconus. Then you add professional jealousy into the mix; it was really clear what was going on.
But this realization saddened me because doctors are always supposed to be advocates for their patients; that’s the Hippocratic Oath. I never thought that I would be attacked and ostracized because I put patients first. Well, little did I know though something big was about to happen. One day a big guy with a big secret walked into my office. He’s 5’10”, built like a battleship, strong as 10 oxen and as nice as a good neighbor. His name? Steven Holcomb. In 2007 he was the United States’ best hope for winning an Olympic gold medal in a sport of bobsled because he was the top driver, but he was keeping a secret from his coaches and his teammates; he was losing his vision from Keratoconus and it got so bad that he had to drive the bobsled by feel because he could no longer see the track.
I’m not sure how much you know about the sport of bobsled, but it’s an extremely dangerous sport. Just imagine flying down the icy, windy bobsled track over 90 miles per hour holding onto to virtually two shoe strings to steer the monster 500 pound beast of a sled. Athletes have been paralyzed or died because the driver lost control going around a turn, flipping the sled.
It’s dangerous with perfect eyesight, let alone having profound vision loss. Steven realized that he had to tell his coaches, and he did, and his teammates about his Keratoconus, how he’d lost most of his vision and that he had to retire, but his coaches in the US Olympic Committee wanted to find a solution so they sent him to 12 other eyes doctors all around the country, but they all gave him the same bad news. “You need a cornea transplant.” Because of the fragile nature and the lengthy recovery, either way he would have been out of the sport, but then his medical team doctor found this one doctor out in Beverly Hills who was doing something different for Keratoconus; that’s when I met Steven.
I performed the C3-R® procedure and then followed it up with implantable lenses to improve his vision, and then it was like a miracle; he was 20/20. He immediately started sledding again and then in 2009 he won the world bobsled championships, the first for the United States in 50 years. Fifty years; you know, when gas was 25 cents a gallon. Then in 2010 at the winter Olympics in Vancouver, Steven won Olympic gold, the first for the United States in 62 years. And the last time that happened Harry Truman was president in 1948.
Steven’s historic gold was widely covered in the media and sent a 9.0 Richter scale shock wave throughout the medical community, and it got word to patients that there’s a better option than waiting for a cornea transplant with its uncertain outcome and lengthy recovery, and it also pierced the vocal chords of many of my critics because essentially now there was an Olympic gold medal behind the C3-R® procedure.
Steven and I appeared on Dr. Phil’s The Doctor’s day TV show where I announced the name change from C3-R® to Holcomb C3-R® to honor Steven and it was the first time that a procedure was named after an Olympic athlete. At the National Vision Awards Steven and I were honored for our courage and our perseverance. At the 2014 winter Olympics in Sochi, Russia, Steven won double bronze, making him the most celebrated bobsled driver in US history. Steven wrote a book about his journey and sent me in large, framed artwork that hangs beside my desk. He inscribed this message, “No words can explain. You saved my life. Thank you!”
Well I don’t know about that, but I do know that Steven saved my professional reputation and he gave and continues to give hope to millions of people worldwide with Keratoconus. Among those is 7th grader Jake Ansett from Arizona who became a straight A student and helped his basketball team win the championship after we treated his Keratoconus. Monique Cromis from Texas who had lost the ability to drive her children at night because of severe glare and halos around lights, but now after treatment she can drive them daytime and nighttime. Mariah Bryant from Massachusetts, who tried to join the army to serve our country but was denied because of her Keratoconus. Now, after being treated, she is on her way to becoming a nurse to help others. Jake, Monique and Moriah all have their lives back because of Holcomb C3-R® which was combined with insertable implants called Intacs.
This is my life dream, to help people. The procedure had a 99.3 percent success rate and we had performed over 750 procedures before we met Steven Holcomb, but it was the media attention of Steven going from severe vision loss to Olympic gold medalist that catapulted the procedure into public consciousness even though it had already been scientifically proven.
Twelve years later we have performed over 5400 procedures, saving the vision of patients from 49 states, 44 countries, with ages ranging from 9 to 63. Today Holcomb C3-R® is a widely accepted procedure. When I look back, for me it was a fight to achieve legitimacy for my procedure; for my patients it’s a fight to see again. I think my battle is really about refusing to give up and believing in yourself, and that message goes well beyond eye disease.
You know the expression “You have to pick your battles?” Well sometimes the battle picks you and it’s your job to fight. Thank you.