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Summary of 2019 NAPT Conference

April 11, 2019

The 2019 conference of the National Association for Proton Therapy was held March 24-27 at the historic and recently renovated Biltmore Hotel in Coral Gables, Florida.


The conference facilities were in a free-standing building apart from the hotel (below). That was once the largest swimming pool in the Continental United States.


The main meeting room was quite spectacular.

Whoever organized this conference on proton therapy had people like me in mind. There was very little free time, with events packed in tightly, including during meal time. I came for information, so the more the merrier.

I took many pages of notes and filled my phone with shots of slides from the presentations. I have included this lengthy summary in my blog to give anyone interested in proton therapy a deeper look at the industry itself. Although there are some bumps in the road to gaining mainstream acceptance, don’t think that these proton therapy folks are minor league players. This is the medical industry in full court press.

My summary is not in chronological order. First I will share the presentations that pertain directly to proton therapy. Then I will share some very interesting material about the future of health care. Please note: You are welcomed to use any of the facts and information you find here. That's why I am sharing it. But please do not copy the slides and use them without first getting permission from the National Association for Proton Therapy. (Contact Director Scott Warwick at swarwick@proton-therapy.org.) 

COMPPARE

One of the biggest roadblocks to the acceptance of proton therapy is the small number of well-constructed trials comparing protons and x-rays. Such trials are very expensive. Now, however, there is a large, well-financed effort called COMPPARE in which numerous proton centers are involved. They had a meeting in Florida just a few days before this conference. The title of the study is: A Prospective Comparative Study of Outcomes With Proton and Photon Radiation in Prostate Cancer. Picking letters from here and there in the titke they came up with the name COMPPARE, which is what the study is meant to do, namely, compare the results of proton therapy and photons (x-rays). I was going to pick out a different funny accronym from the same title, but I'll leave that up to you. Here is the official description of the study

This study is a large, prospective, pragmatic, controlled comparison of patient-centric outcomes [quality of life (QOL), toxicity, and disease control] between parallel cohorts of men with prostate cancer treated simultaneously at proton therapy facilities and at geographically similar conventional (photon-based) radiation facilities using intensity-modulated radiation therapy (IMRT) techniques.

You can see from some of my earlier blog (Proton Critics Cling to Flawed Study) how poor (or deliberate?) design of a trial can affect the result. In this test, they expect the differences to be relatively small. They are also testing three different factors, namely patient-reported quality of life reports, physician toxicity interventions, and disease control. As a result, they need a large number of participants, so they are aiming for 3,000.

This is a difficult assignment because previous comparative studies have had difficulty in accrual, which is to say, finding participants. Rapid accrual helps prevent differences caused by changing protocols over time. Failure to find enough participants has caused many studies to be cancelled. The cost for conducting the trial is several thousand dollars per person, which means millions of dollars.
Here is what they expect:


Everyone in the proton community is exited, as they welcome the comparison. I’m not sure how enthusiastic the x-ray proponents are. Since the prostate is easy to reach, x-rays do a relatively good job eliminating the cancer. The biggest differences may be ni quality of life.I rather wish they had spent this kind of effort on something such as left-side breast cancer, where there is a clear superiority of proton therapy. Here are two websites at which you can find more information:
www.comppare.org
https://clinicaltrials.gov/ct2/show/NCT03561220?cond=prostate+cancer&draw=8

PATIENTS AS ADVISORS AND PARTNERS

As a proton therapy patient and advocate, this session held much interest for me. Fern Nibauer-Cohen gave examples of digital marketing done by the proton therapy center at the University of Pennsylvania. That is a very successful center, operating sixteen to eighteen hours a day to accommodate all of the clients. In fact, they are expanding and building another single-room facility in nearby New Jersey.

Penn Medicine has some 400 patients in their active alumni group. Some of them go to the proton center weekly to talk with current patients, paired one-on-one with a new patient. They help raise awareness and engender referrals. They have an annual reunion and a quarterly newsletter. Former patients contribute to their blogs and participate in philanthropic efforts.

Penn Med’s digital marketing program has changed its emphasis through the years. Early on, they emphasized the accuracy of the technology, much like I do. But now, they talk more about patient experience, community, art therapy and yoga. They conduct studies to show how such activities enhance the outcome and the positive experience.

Very fascinating was a video they showed of a former patient, Tom Ashley. He’s a photographer and videographer so he, as did I, documented his experience as it was happening. I took photos but he took videos. He had a small GoPro video camera that he attached to the equipment. In one case he attached it to the gantry, and then they rotated the gantry, making it seem like Tom was rotating on his treatment table. He put the video on his website, where it was seen by some of the staff at U Penn. They decided to put it on their own proton therapy website, where it is now the most watched video. (See www.youtube.com/watch?v=0D-Je2H36Rc).

Tom is also involved in virtual reality (VR), starting a company called VR Bridge. The proton center provides people with virtual reality equipment (those goggle-like things that they look into) with peaceful scenes and music, meant to relax them, which it does. It seems that Google Cardboard makes VR very accessible.


Applications are being created for the cellphone that fit into the cardboard for viewing.

Next Deb Hickey talked about the Brotherhood of the Balloon (BOB), started by her father Robert Marckini more than eighteen years ago. The balloon is a device inserted in the rectum when receiving radiation treatment for prostate cancer, to stabilize any possible movement. Technology has advanced since then and balloons aren’t used as much now. But the pun, Robert and BOB, seemed fun when it was just a handful of people who decided to stay in touch. Little did they know it would grow into an international organization with more than 10,000 members. Had that been envisioned, perhaps they would have chosen a different name.

Deb Hickey included my blog in the graphic below (center).


But she missed including either of my books in this graphic.


I'm quite jealous of the symbiotic relationship between all of the parties involved. Robert was treated at Loma Linda Medical Center in California, the first proton therapy center in the United States. They have taken over financial support for the newsletter and organization, having hired Deb as the administrator around nine years ago. Every newsletter prominently displays Robert’s book and asks for reviews on Amazon (he has around 380 or so, I believe). So Robert sells books, which in turn draw people to Loma Linda. Also, Robert has raised more than thirteen million dollars for research at Loma Linda. So everyone benefits, Deb, Robert, Loma Linda, the members of BOB, and men diagnosed with prostate cancer.

I was hoping for a similar relationship with Provision, thinking my books could bring them business and they, in turn, could help me promote my books. That would give me some income to pursue my proton therapy advocacy. I could go with them to trade shows as a typical patient. But they have shown no interest. Bummer. When I explained that to Deb, she described how swamped she and Robert are with emails and other work for BOB. “Be careful what you ask for,” she warned.

Her comments and my experience at the conference led me to an epiphany regarding my status and self-identification. I have written a short, personal blog describing my conclusions about finding my place in the proton world.

OKLAHOMA JUDGEMENT AGAINST AETNA

I have written previously about the $25.5 million judgment against Aetna in an Oklahoma verdict. There was a detailed presentation about that case; so I have written a separate blog update. I still think litigation holds a lot of promise in getting proton therapy a fair consideration.

FROM PATIENT SATISFACTION TOWARDS PATIENT EXPERIENCE

This presentation featured Elizabeth Vanzo, from Provision CARES Proton Therapy Center in Knoxville, Tennessee, where I was treated. I remember her quite well. She has now been transferred to the recently opened Provision CARES proton therapy center near Nashville, TN.

She made a distinction between measuring patient experience and patient satisfaction. The latter is subjective (feelings, expectations) and the former objective (measurable facts). She then described how they developed a questionnaire for patients which takes into consideration both of these qualities. They are hoping to utilize this questionnaire in many proton centers so as to be able to amass consistent and comparable data.

Later, in the vendor hall, I was talking with someone who was working with these metrics and questionnaires. I pointed out that I’m on a Medicare registry for the rest of my life, tracking the success of my proton therapy treatment. Every six months I have a physical inspection and a blood test. I send the results to Provision. I have also been receiving a questionnaire in the mail which I return by post. The woman with whom I spoke seemed dumfounded that I still received a paper questionnaire, rather than doing it online.

Well, actually, I shared with her that I didn’t receive the last questionnaire. It was due in January. I figure to wait until it is time for the next one and see if it comes, or if I am told to go to a website somewhere to fill it out. Medicare paid 80% of the cost of my treatment in return for my being on this registry. I wonder what happens if I just drop out. Do they come after me and ask for $75,000? Or if Provision loses me, then what? I hope not to find out.

LUNCH

It would be impractical to send 250 people on their own for lunch each day; so on both Tuesday and Wednesday lunch was provided. The first day featured Mevion presenting information about their products. They indeed have a very convincing demonstration of their special collimator, to be described shortly. This was the day we got an hour behind. Mevion had 90 minutes for lunch and presentation. We filled our plates at a buffet set up outside on the terrace and then returned to our tables to eat and listen. The day was packed full of presentations, sometimes with no break between them, not even five minutes. And then lunch was also filled with more information. I thought they might cut their program short to help us get back on schedule, but instead they dragged it on and on, even going overtime a little. So we stayed an hour behind the rest of the afternoon.

Above: Mevion S250i. I suspect the name refers to 250 degrees of revolution of the gantry. This concession from 360 degrees is key to its space-saving footprint.

On Tuesday, lunch was quite different. The tables were formally set and the meal was served to us while we viewed the 2019 recipient of the NAPT Lifetime Achievement Award. The lunch was rather sparsely attended, with only three of us at our table for eight. I could have had multiple cheesecake desserts, but I didn’t.

IT’S ALL IN THE MESSAGING: SUCCESSFUL MODELS, METRICS & COMPLIANCE IN MARKETING AND ADVERTISING

This is one of the most important tasks the proton community faces, namely, getting out he word. The medical and insurance communities continue to resist proton therapy, cast aspersions, quote outdated unfavorable studies, and write misleading articles; so I think we must go directly to the pubic. This, too, has been the subject of one of my previous blogs.

ADVOCATING FOR TODAY’S CANCER PATIENT

Again, I feel this is applicable to what I am attempting to do with my books and websites. The presenters told about their particular organizations and what they were doing. TheLive Like Bella Foundation is named after a local girl who died of cancer. The Alliance for Proton Therapy Access is an industry lobbying group, about which I have previously written a blog. Compass to Care is another effort started by a couple affected by cancer in their family. They help people get transportation and housing while being treated for cancer (including proton therapy). I saw a logical extension for my own activities, to start an organization which would extend my efforts to a larger audience and continue after I am no longer able to do the work. But then I saw how much work it is for all of them, the long hours, the financial challenges, and decided to keep going with my singular low-key effort.

DINNER

Linda and I took an Uber to Versailles, a famous Cuban Restaurant on the edge of Little Havana. We were disappointed in every way. It is a huge touristic operation, but the food was mediocre and we were disappointed. I’m a Trip Advisor reviewer, with almost 900 reviews and hundreds of thousands of views. I write about every place we go. Poor Versailles, they didn’t do very well in my three-star evaluation. Someone at the hotel had suggested we go to La Casita, just a few blocks from Versailles, as being a more authentic place. We should have listened to that advice.

THE NEXT GENERATION OF PARTICLE THERAPY: DEVELOPING CARBON TECHNOLOGY IN THE U.S.

If proton therapy seems like an uphill effort, consider carbon particles. They are heavier than the ions proton therapy derives from hydrogen atoms. They hold real promise except for the size of the equipment required, the enormous amount of power it demands, and the size of the synchrotron. Look at this comparison.

The only manageable configuration for carbon particles is a fixed beam, much the same as the fixed proton beam with which I was treated. There is only one carbon-capable gantry in the world, in Heidelberg, Germany. I have a photo of it in my book. Here it is. For scale, note the size of the person standing under the gantry.


The current direction of the proton therapy market is for smaller centers with only a single room, along with smaller and less expensive equipment and buildings. A move to carbon, despite the promise of better outcomes, would be in just the opposite direction. Perhaps we will eventually a have a couple of locations in the United States, but it doesn’t strike me as the kind of technology that could ever go mainstream. That’s probably what the horse buggy dealer said when the first car was invented.

ADVANCES IN PROTON THERAPY TECHNOLOGY

This presentation was really exciting. Proton therapy is already outstanding, and now recent advances promise even better accuracy and results.

Flash

Flash utilizes an ultra-high dose rate delivered in less than one second in hypofractionated form, which means a single or small number of treatments. What caught my attention is how the puzzling effects of a super high flash dose fails to fit any of our current proton therapy paradigms.


The usual logic goes like this. To receive no radiation does the least damage to tissue. Untouched healthy tissue can be used as a baseline for comparison. The more radiation you use, the more likely the cancer is to be eliminated, but also the more likely you are to damage healthy tissue. My treatments, for example, were 2 Gy each. Gy stands for Gray, which is a measure of radiation.

Experiments with a single flash of 40 to 140 Gy show a much more limited effect on healthy tissues than one would assume by just multiplying the results of smaller doses. Many of the experiments were carried out with rodents -- hundreds of mice and rats totaling a thousand or more. In one experiment the whole brain of a rat flashed with 60 Gy showed no apparent damage to cognitive function.

Treated for leukemia with a high flash dose, 60% of the mice survived. In using flash on the lungs, there was less fibrosis and better elasticity to the tissue, closely resembling the control tissue that received no dose.

At lunch on Wednesday, I talked with Neik Schreuder, from Provision, abut this phenomenon. He knows more about physics than anyone I can think of. When I marveled that it did no damage to healthy tissue, he corrected me and said “less” damage. So it isn’t zero, but less than conventional treatment. He then shared a theory as to why that might be the case, but it went right over my head. It was about oxygen depletion. Perhaps he was attributing tissue damage to the presence of oxygen, so when a high flash dose quickly depletes the oxygen it avoids further damage. I could be way off.

SPArk

I first reported this in my review of last fall’s ASTRO meeting. X-ray technology developed from beaming at a single angle to beaming from multiple angles, even 360 degrees. Now IBA, the proton therapy manufacturer, and the proton center in Beaumont, Michigan, have conducted experiments in having the gantry rotate during the actual beaming of the protons. The dosimetry must be a terrible headache, setting it all up accurately. But the results, they tell us, improve those of a single beam.

Whereas pencil beam scanning for a brain tumor takes 11 minutes, using SPArc took only 4 minutes and with 30% smaller dose. I already rave about the performance of proton therapy. Now it is moving into many more iterations. It reminds me of x-rays, which took many decades to mature and to develop new technologies. Now the same process is taking proton therapy into new and exciting territory.

Reducing side effects is proton therapy’s main claim to fame. Look at the above chart and see how SPArc reduced side effects even more. I think some of it is because they overcome one of the uncertainties in proton therapy, and that is calculating exactly where it stops. The front part of the tumor is fully treated. The farthest edge of the tumor, however, is difficult to treat exactly up to the perimeter. So, to be careful, you have to go beyond the tumor and leave an acceptable margin. The more accurate you can make the protons, the less margin and therefore the less damage to healthy tissue. Buy using SPArc it is like treating the front edge of the tumor all the way around. Hence, less damage to healthy tissue. If you are a physicist, you are probably amused by my simple explanations.

Mevion’s Collimator

Mevion was a leader in smaller, single-treatment-room proton centers. Their equipment is very compact. However, the original equipment used double scattering technology, which is not as accurate as pencil beam scattering. Now Mevion has a new model with pencil beam capabilities. Plus, a proprietary collimator that makes it even more precise.

A collimator is a device which shapes the beam to increase its accuracy. Double scattering has a plane-like beam which uses apertures, a type of fixed collimator, to shape the beam to conform to the tumor. Pencil beam scanning lays out a series of small spots, achieving accuracy such that does not require a collimator. Or does it? Mevion pointed out that they still can perform a valuable function. How it functions and keeps up to speed with the protons is a significant technological achievement.

If you portray the proton spots as little circles, then there is a problem on how to line them up along the perimeter of the tumor. If you don’t go past the edge, then there will be some areas that get missed. If you reach those areas, the spots must go outside of the tumor. Granted, it may only be a millimeter, but still, it is an undesirable effect. The collimator can cut off the spot to have a flat side, making it fit better. It can do that anywhere the tumor calls for it, not just at the perimeter.

This next slide summarizes much of what was said about the future of proton therapy.

This is a very exciting time to be working with proton therapy. If I were an x-ray technician, I would be thinking about cross-training for proton therapy.

ProNova

When I was being treated in Knoxville, TN, I visited the ProNova factory. I was impressed. Before going into business, they spent a year just conceptualizing certain beneficial innovations, and patenting them. Their gantry doesn’t look like anything you would find elsewhere. It breaks down into sections for easier shipping. The nozzle, from which the protons are emitted is cantilevered out from the gantry wall (see below), not attached to a surrounding revolving wall (tunnel) as with other systems. To do this required redeveloping every aspect of the bearings and other features. The main turning motor actually comes from a concrete truck mechanism.

Here is a photo of one of their gantries under construction that I took in 2016 at their factory near Knoxville.

ProNova has a 360-degree capability, which is unusual for a smaller system. Personally, I was impressed by their superconducting magnets, which they make in house. It takes very powerful magnet to control and direct the proton stream. Since the protons are all positively charged, they want to scatter and repel each other. So they must be forced by a more powerful force to stay into an organized beam. Large electromagnets take energy, and create heat. Unless, that is, they are superconducting magnets. These are encased and then lowered to something like 450 degrees below zero. At that temperature, there is virtually no resistance, so it takes very little to operate them. The superconducting magnets on the beam line, used to deflect the beam, draw four watts. Four! Compare that to a 60-watt light bulb.

SUMMARY CONTINUES

The second part of my summary is not specifically about proton therapy but other, related and interesting topics. See Summary 2.

* * *

Meanwhile, you may want to check out our two other related websites:

www.ProtonTherapyBook.com
This is dedicated to Robert Ferre's books, Best Prostate Cancer Treatment: Proton Beam Therapy and Proton Therapy: Revolutinary Tretment for 80% of ALL Cancers . It has updates and additional information, photos, and more.

www.proton-therapy-centers.com
This site has an up-to-date list of proton therapy centers in operation in the United States, as well as a number planned or under construction.

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