When it comes to chronic illness or sports, nothing is more inspirational than a great comeback--and one of the greatest chronic illness comeback stories in professional sports is that of Rolf Benirschke.
Shortly into his second NFL season as the placekicker for the San Diego Chargers, Benirschke became very ill and was diagnosed with Inflammatory Bowel Disease (IBD). He played that season but would require several major abdominal surgeries that left him wearing two ostomy bags and his future very much in doubt. Remarkably, he recovered and made a dramatic return, receiving numerous awards such as NFL Man of the Year, Comeback Player of the Year, NFL Players Association Hero of the Year, and earning a spot in the Pro Bowl. In 1997 he was the twentieth player inducted into the San Diego Chargers Hall of Fame and, in 2004, was inducted into the Academic All-America Hall of Fame.
These days Benirschke serves as a spokesperson for the Crohn's and Colitis Foundation of America, founder of the Grateful Patient Project and co-CEO of Legacy Health Strategies. We caught up with Benirschke to discuss his experiences and insights for those who suffer from chronic illness.
Good Days: Could you share your personal healthcare journey--the challenges you faced and how they were overcome?
Rolf Benirschke: I was drafted into the NFL in 1977, but became sick in my second season and was diagnosed with Crohn’s disease, an IBD. At that time IBD was not well understood and there were not many good treatment options, so I continued to play as best I could. I played sick all through the 1978 season, doing the best to manage my illness but getting sicker and sicker.
That off season, after trying every possible treatment available, I convinced myself I was getting better and began the 1979 season with some optimism. Unfortunately, my illness returned with a vengeance and I collapsed on the team plane flying home after our fourth game of the season. I was taken to the hospital for an emergency bowel resection but complications necessitated a second operation six days later. I woke up from that second surgery 65 pounds below my playing weight, wearing two ostomy bags, and septic with the physicians telling my dad they weren’t sure I would survive the night. I would spend the next six weeks in the intensive care unit fighting for my life and wondering what there really was to live for.
I survived, was finally released from the hospital, and began to recover, examining my life and looking for inspiration. I found it in the books written by several of the POWs who had survived the Vietnam war and horrific treatment endured during extended imprisonment. I decided to employ some of the techniques they had used to get through the long days, weeks, months and even years of captivity. I learned to break time down into smaller blocks, began setting small achievable goals like simply getting up in the morning to walk to the mailbox and back, but then each day adding a mailbox. In the process, I discovered what they had discovered, an “indomitable spirit” that I now believe resides in all of us but that lies dormant until we are severely tested. I’m talking about having greater courage, greater creativity, and a greater ability to persevere and overcome things we couldn’t even imagine.
Buoyed by this new-found courage and outlook, I asked to meet with our team owner to see if he would allow me to compete for my job again when everybody had assumed my football days were over. Much to my surprise he agreed so long as the medical staff could devise a plan to protect my ostomy bags while playing. I returned the following season and would play seven more years, four while wearing ostomy appliances. I would have two additional abdominal surgeries, one to do a complete colectomy and the other to create an internal reservoir, a Koch pouch procedure, that would enable me to get rid of my ostomy appliances.
GD: But this wasn’t the end of your healthcare challenges. Can you tell us about what happened next?
RB: Yes. As a result of the 80 units of blood I had received during my first two surgeries, I was inadvertently infected with the Hepatitis C virus. This wasn’t discovered, however, until a routine insurance exam almost 20 years later. Faced with this new challenge, but now married with four young children, my physician enrolled me in a new clinical trial as the medical community sought ways to combat this recently discovered virus. It would take three different year-long trials but I was finally cured of my Hep C in 2006.
GD: Why did you choose to become a patient advocate?
RB: Advocating for patients was not a conscious choice until after returning to the NFL in 1980. There was a lot of publicity surrounding my comeback and it prompted patients to write me letters asking how I was able to live and play with an ostomy. I quickly learned that there are over 100,000 ostomy surgeries performed every year and that each was life-changing for that patient and their families…and…nobody was talking about it. I decided to do something about that and created a program for patients living with IBD, colorectal cancer, or an ostomy, to share their stories and bring awareness to the situation. I realized that with the visibility of my position in the NFL, I had a unique opportunity to comfort and inspire others and provide the hope that we patients are all desperately looking for.
GD: What is the Grateful Patient Project?
RB: The Grateful Patient Project was created after September 7th was officially recognized as Grateful Patient Day. That date marks the anniversary of my first day back playing in the NFL after my illness. Our goal is to provide patients the opportunity to thank a doctor or nurse, a caregiver or family member, and even a medical device or pharmaceutical company who made a treatment that allowed them to live or return to doing something they love.
In a world that is increasingly divided, what we see and hear from grateful patients is their shared humanity, the goodness of people, and their appreciation for life. Misunderstanding aspects of healthcare can inadvertently do real harm and stifle research and innovation. We are at the verge of creating breakthrough therapies for all kinds of diseases, using new tools like genomic sequencing, immunotherapy, and precision medicine that can really change healthcare. If we make it difficult for this to happen with burdensome regulations, an onerous clinical trial and FDA approval process, we may miss this golden age of medicine that is upon us.
GD: What advice would you offer patients who may be struggling to find, access, or afford certain treatment for their illness?
RB: First, I would encourage you to “own” your disease, to take it head on and to be your own advocate, and then look for other foundations or associations supporting your disease. Second, as new therapies are being approved, know that not everybody is instantly aware of them, including insurance companies and health plans. What we’re finding is that there is often an automatic denial of coverage for certain treatments even though there is clear clinical evidence of their effectiveness. What we have learned, however, is that if you push back and ask for a peer to peer review, cite relevant studies, show that the procedure or medication will in the end be less expensive than other traditional treatments, in many cases your medication or surgery will eventually be approved. So, don’t take an initial denial of coverage lying down--fight for the treatment that you believe will help!