We spend a considerable amount of time sharing our stories of how we found proton, celebrating the fact that we somehow succeeded in doing so—not an easy task. But have you thought about the flipside of our journey? Just how is it that proton beam therapy (PBT) was there for us to find?
I admit I had not given much thought to this question until now. I was recently invited to speak to the leadership team of IBA—Ion Beam Applications—first with their international group in Belgium, and then with their North America team here in the U.S.A. They are the people responsible for the technology used to treat my prostate cancer. For me, it was more than an honor and a privilege to meet them. It was an education, and I would like to share some of what I learned with you.
Have no fear—this will not be a technical dissertation or history lesson. It’s about the people.
At an earlier speaking engagement, I had the rare opportunity to briefly meet Yves Jongen, the man who founded IBA three decades ago. He introduced himself and modestly asked me whether I knew of IBA. I did know, but I have since discovered that most patients—even those of us treated in facilities using IBA equipment—don’t know who IBA is.
Who is IBA?
Among other things, IBA is the global leader in proton therapy technology. They have many very capable and formidable competitors, but more proton patients have been treated with IBA equipment than all others combined. This is not surprising—they’ve been around for more than thirty years. Over forty proton centers use their technology, including University of Florida Health Proton Therapy Institute in Jacksonville where I was treated for prostate cancer in 2011.
I want to be clear at the outset that it is not my intention to disparage their competitors. In fact, it is entirely possible that their stories are similar. And I’m glad they’re there because competition benefits us all—even IBA—so kudos to IBA and each of their competitors for being in the game. The more proton players, the better!
Everything begins with someone’s idea, and this science fictionish magical machine was in this case, Yves Jongen’s “baby,” as he has called it. Based on the cyclotron invented in 1939 by Ernest Lawrence, Jongen spent years making a compact, affordable version that could be used in a clinical setting to treat cancer with proton therapy. In 1986 he founded IBA to market his technology to cancer treatment facilities throughout the world.
It’s a complex apparatus, but its essence is easy to describe succinctly: You pour hydrogen into the cyclotron, which spins it around to two thirds the speed of light—fast enough to throw the heavy protons away from the rest of the atom. Those protons are flung down the tube known as the “beam line,” guided by magnets, and then … ZAP! Out pops the proton beam in the gantry, and cancer is cured!
You are correct. I am not a physicist or an engineer.
I have always found it exciting and exhilarating to be in room full of people from whom I can learn. For me, talking with the IBA people was that kind of thrill, and I anticipated it would be. But as you might imagine, making a presentation to them felt daunting. When they invited me to do so, my initial reaction was directed to my wife Lucy as a question.
“What can I possibly say that would be of any interest or use to such amazing people? They conceived, designed, engineered, built, marketed, sold, shipped, assembled, installed, serviced, and supported Yves’ “baby.” They run a business which makes this massive undertaking viable. To me, they are rock stars. They provided the technology that killed my cancer. Why would they want to hear from me?”
Lucy’s answer was quick, accurate, and humbling. “Ron,” she said. “YOU are the reason they do all that! Of course they want to hear from you!”
Their customer’s customer
But I am not actually IBA’s customer, I realized. The facilities choosing to use their equipment for cancer treatment are customers of IBA. I am their customer’s customer, once removed from IBA.
Yet Lucy (as usual) is correct: IBA’s focus is clearly on me, as evidenced by their mission statement. It is beautifully brief, and as precise as a proton beam. It is simply this:
It’s my life they’re talking about, and maybe yours. Do you share my feeling of humility and gratitude for what they provided for us?
The ironic invisibility
At most facilities where their technology is used, IBA personnel are indeed on site while we’re in the gantry, but exactly where are they? Hidden behind the secure door of “the vault” where the cyclotron is safely housed. They spend most of their time unseen, making sure the giant machine keeps popping out protons for us patients, striving to keep downtime to as close to zero as possible. And they do a remarkable job.
Sadly, because they’re usually not visible, many of us don’t know who they are or give them a second thought. We regularly see the radiation therapists, the nurses, the doctors, but not the guardians of the beam. We almost never see the team who keep the protons zapping nearly 100% of the time. Ironically, if we do see them it is probably at one of those rare moments when something has gone wrong and they must leave the vault.
The wizards behind the curtain
In my U.S. presentation to IBA, I referred to the men and women of the on-site IBA support team as the “magicians behind the curtain.” Afterward, I spoke with one of them—I’ll call him Lee. He told me he had coincidentally often referred to himself as “the wizard behind the curtain,” because that’s exactly how he feels. And “wizard” is certainly a more accurate characterization than “magician.” Although it seems a little like magic to a layman like me, it is highly skilled technical expertise that keeps the system humming along.
I speculated that patients would like the opportunity to meet Lee, and asked him why he doesn’t venture out of the vault to give us a chance to do so. He explained: When patients in the gantry see someone in an IBA shirt, they assume something is wrong and might become anxious. To prevent adding anxiety, Lee respectfully stays in the vault.
It would be most appropriate for the beam team to sign our certificates, shake our hands, and accept our thanks for being vigilant, dedicated keepers of the beam.
Well, what a shame. Lee is an amazing person and I suspect you’d enjoy meeting him, as I did. I suggested that the IBA wizards should occasionally leave the vault just to meet the patients, especially when everything is working well. They could venture out to visit patients in the lobby, on the facility tours, and in the gantry—especially on graduation day. It would be most appropriate for the beam team to sign our certificates, shake our hands, and accept our thanks for being vigilant, dedicated keepers of the beam.
The extended curtain
I also learned that the wizards are not all in the vault. Some are across the ocean sitting at desks, but hidden from us nonetheless. Others are traveling the world, promoting their cutting-edge technology, educating those who will listen.
It is a daunting challenge. I spoke with IBA’s global marketing director, who clearly summarized his role and objective: to make proton therapy available to all patients who may benefit from it. Today, he said, only 1% of patients treated with radiotherapy are beamed with protons, while at least 20% could benefit. So he has a lot of work to do—as do we.
Awareness, access, and affordability
Interestingly, his obstacles are much the same as those we encountered as patients. A newly diagnosed patient must somehow learn that proton therapy exists and has potential advantages over conventional radiation. Until doctors become more willing to include proton on the patient’s list of options, only the most proactive, investigative-minded patients are likely to find out about it. Physicians’ referrals are critical, and not an easy hurdle for us or for IBA.
If a patient does manage to find out about proton and wants it, they must then find a facility offering it. Thankfully, this is becoming easier. The equipment space requirements and costs are falling. Treatment centers are adding proton capability in increasing numbers to gain a competitive advantage over those without it. As mentioned, IBA alone has over forty facilities committed to their technology, and proton therapy is available throughout the world.
Perhaps when an even newer, more expensive cancer therapy comes along, insurers will have a new target …
The final hurdle, but not the easiest, is the insurance industry. Coverage remains a major challenge for both patients and IBA. If patients can’t afford it, why would a treatment facility bother offering it? Perhaps when an even newer, more expensive cancer therapy comes along, insurers will have a new target and will redirect their denials away from proton. But until they stop their false characterization of proton as experimental, not cost-effective, or not medically necessary as justification to deny coverage, IBA will have difficulty reaching the additional 19% who could benefit.
More than a business
At the end of the day, IBA is a business. Proton facilities are businesses. Insurance companies are businesses. They must all be profitable, or they will cease to exist. Far be it from me to tell them how to run things, but I do know this: none of them can succeed without serving patients properly.
I am certain IBA understands this. In fact, I met several IBA employees who were treated for cancer with their own equipment. I met an IBA woman who is in treatment now. Yes, they are their own customer’s customer, and they know what it’s like to be on the slab.
They not only know what it’s like to be us; they are us.
Have you met your wizards? I’d love to hear about it (click here).