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AN OPEN LETER TO JAY HANCOCK

Jay, I was treated with proton therapy in 2016 for prostate cancer at Provision CARES Proton Therapy Center in Knoxville, TN. Since then, I have been an avid proponent of proton therapy, having written three books and started three websites. As with other proton therapy blogs, I have responded at length to your unwarranted negativity about this subject. In this personal message to you, I want to be more specific.

A new proton therapy center is being planned for Salt Lake City. Here is some of their press release:

“Bringing proton therapy to Utah is completely in keeping with the vision we had when we founded HCI over two decades ago” institute founder Jon M. Huntsman Sr. said in a written statement. “I remain absolutely committed to ensure that our patients have access to the very best equipment and expertise to fight their cancer. Proton therapy is yet another tool we will bring to our patients to give them the best possible outcomes against this dreadful disease.”

I would like to suggest that Dr. Huntsman is not in an arms race, he is not duping rollicking investors, he is not victim of a price bubble, he is not proceeding in great haste without proper scientific evidence. He recognizes the potential of proton therapy in the treatment of cancer and he wants to have that capacity at his clinic. That is what is really happening with proton therapy.

Muckraking has been the tool of many journalists trying to make a name for themselves. But, once you arrive at a more reputable reputation, perhaps you are at least peripherally interested in being correct in your facts. Notwithstanding the intentional negative aspersions, proton therapy is indeed very expensive, some centers have failed, others aren’t making a profit. I have written about those topics at length on my blog. I am more concerned about your lack of understanding about proton therapy itself.

Speaking of proton therapy you say “its beams stop at a tumor rather than passing through. But evidence is sparse that this matters.” Nothing could be further from the truth. The stopping power of protons, sometimes noted as the Bragg’s Peak, is the essence of why it is unique and so superior to other modalities. Virtually every textbook on this type of radiation extolls this property, that protons enter the body with low energy, and do not exit at all as do x-rays. Not only does this matter, there is seventy years of research supporting it, which is hardly sparse.

Treating left-side breast cancer is a good example. With x-rays, you damage the heart and lungs. But with protons, the beam stops at the cancer and spares the other organs. Dr. Sameer R. Keole, an assistant professor of radiation oncology at the Mayo Clinic in Arizona and a society board member, said with brain tumors, for example, proton therapy reduces the dose to healthy tissue by 50 to 90 percent. That can mean preservation of cognitive abilities. In some breast cancers, the dose can be reduced up to 90 percent, which may translate into lower risk of heart attack, he said. And because radiation can have effects over time, those with long life expectancies such as children and young adults are good candidates for proton therapy. All of this data does matter, and shows the superiority of proton therapy. You discredit yourself by siding with the naysayers. Here’s an example.

You based much of your argument on quotations from Dr. Peter Johnstone, the chief executive at Indiana University’s proton center, which closed in 2014. The proton center in Bloomington did a study to find out whether they should update their antiquated equipment. It needed to be replaced, at a rather high cost, and the center was operating at a loss. Here is an except from that study.

We concluded that proton therapy does have potential value in the treatment of certain cancer patients. However, (the center) cannot contribute meaningfully to research in this field. This facility is outdated and requires significant investment to continue to operate. Because of both the expense of these investments and the high operating costs of an aging facility, it does not appear that (the center) can ever achieve a positive margin.

Bloomington closed because it was outdated, not because there much unused capacity. The report gave three major reasons for recommending the closing of the Indiana proton therapy center. 1. They weren’t collecting enough from managed care payers such as Anthem and United Healthcare, they weren’t obtaining the optimum payments from Medicare and Medicaid, and the administration was inefficient and duplicative. Actually, all three of those reasons reflect poor management.
Oh wait, who was in charge of that deficient administration? Oh yes, the very same Dr. Johnstone whom you quote as an expert on what’s wrong with proton therapy centers! Is he blaming other factors for his own failures? It is he who talks about arms races and price bubbles (both analogies fail quickly in being at all relevant).

Remember the Manhattan Project? Now that was an arms race. Robert Wilson, one of the leading physicists who developed nuclear weapons, decided he wanted to use his knowledge of sub-atomic particle for peace, not war. His article in 1946 on the medical potential of fast protons led to decades of research at Harvard, culminating in the proton therapy we have today. Calling the development of protons an arms race would certainly distress Mr. Wilson if he were alive today. It is most inappropriate.

That same report from Bloomington used the word “bubble” suggesting the technology was overpriced and not based on sound science or finances. Wait a minute, did they say that their own proton center wasn’t based on sound science? I doubt that such was the case. They brought a world-class expert in the physics of proton therapy to Bloomington from South Africa. When Bloomington closed, he went to Provision, in Knoxville. Wouldn’t he be a less biased person to ask than someone who bungled the management? His name is Niek Schreuder and he is now the head physicist at Provision CARES. You might want to get his opinion.

You say “But its pinpoint precision has not been shown to be more effective against breast, prostate and other common cancers.” Clearly you have not examined the literature on the subject. I refer you to the May, 2016, issue of the Red Journal, published by the American Association for Radiation Oncology, which dedicates 500 pages on proton therapy.

Here’s an illustration. Suppose you have a jar filled with a mixture of red and white marbles. Proton therapy, using the latest advanced pencil beam scanning technology, could treat all of the white marbles and barely affect all of the red ones (or vice versa). X-rays can’t do that. Neither can the older proton technology of double scattering. Pencil beam scattering led me to write my latest ebook: Introduction to Proton Therapy: The Revolutionary Treatment for 80% of All Cancers. To say that this technology is no better than x-rays shows little understanding of the subject.

I could give a positive study for every negative one your present. But here is the difference. My examples will be from the proton therapy community, who see every day the excellent results of this technology, and patients like myself, who praise it. Your examples will be from opponents, those trying to protect their x-ray business, and the fringe-element people you quote in your articles. Further, they will be mostly old and out dated studies. Here’s an example.

You say: “But a 2013 Yale study found little difference in those conditions among patients getting proton therapy versus those getting traditional radiation.” Yet, in 2017, Duke applied for a license to build an $88 million proton therapy center. Now why would they do that? They already have x-rays. Because they are being duped? Unethical investors? Of course not.

You seem to miss the importance of side effects. Yes, many other modalities kill the cancer just as well as protons. So, from that narrow definition, the outcomes are equal. But not really. Even if you discount the fewer side effects from proton therapy (and let me mention that we cancer patients don’t dismiss that difference), there is the issue of recurrence.

Nancy P. Mendenhall (researcher from the University of Florida) reports in The International Journal of Radiation, Biology, Physics (Vol. 88, Issue 3, pp. 596-602) that IMRT (a form of x-rays) increases the risk of potential recurrence for prostate cancer by fifteen times! Hello? That doesn’t sound like they are equivalent treatments to me. Further, M. D. Anderson Clinic in Houston calculated for esophageal cancer, X-rays have a whopping 96% additional cancer risk. Proton therapy it is a fraction of that.

You say: “One recent study of lung-cancer patients found no significant difference in outcomes between people receiving proton therapy and those getting a focused kind of traditional radiation, which is much less expensive.”

Yet the “International Journal of Radiation Oncology” published a study of the National Cancer Database comparing x-rays and protons for Non-Small Cell Lung Cancer (NSCLC) in which proton therapy had higher survival rates. I think that is a significant difference, don’t you” It certainly is to the patient. Here is a study that shows excellent results for lung cancer over a 12-year period: https://www.ncbi.nlm.nih.gov/pubmed/23845845. Again, we can each quote our own studies, but my point is you have chosen to emphasize only the negative ones. That is a distortion of the facts.

My beloved wife Ruth died in 2007 of breast cancer. I believe, had we known about proton therapy, she could be alive today. My friend Jack, who died of lung cancer, may similarly still be alive today. So, I guess I take it personally when you repeatedly state that protons are no better than anything else. That is simply not true.

You say: “The problem is that the rollicking business of new medical machines often ignored or outpaced the science: Little research has shown that proton beam therapy reduces side effects or improves survival for common cancers compared with much cheaper, traditional treatment.”

Your vague generalization in lieu of data makes it seem like you rushed to publication without doing all of your homework. Clearly you did contact some proponents of proton therapy, but only to quote a few sentences which support your argument.

You say: “If the dot-com bubble and the housing bubble marked previous decades, something of a medical-equipment bubble may be showing itself now. And proton beam machines could become the first casualty.”

I guess I’m wasting both of our times to say how incomparable these items are, dot com and houses versus tens of millions of dollars for proton machines. I would agree that greed may have led to a dot com bubble, and also to give mortgages to people who didn’t have the proper credit or income. These are not analogous to buying a cyclotron or building a proton center.

Here’s a side comment. I am a professional labyrinth builder. When I complete a project in an area, journalists often write an article about it. Usually, they are horrible. They confuse labyrinths and mazes, they think they are being clever when they say labyrinths are “a-mazing.” It is very hard for them to do a little research and then write knowledgeably about the subject. The same is true when it comes to writing about proton therapy. The sources you have relied on have distorted your presentation and let you down.

The most egregious source is Harvard's Amitabh Chandra. It is ironic that Harvard was instrumental in developing proton therapy, and now Chandra calls it the most useless technology he has ever seen. He mocks it as a death star and praises insurance companies for not covering proton therapy. Right behind him, in the radical fringe, is Dr. Ezekiel Emanuel, who thinks that people my age should no longer be treated for any medical problem. What the heck, just let them die. Sure, let’s all celebrate that investors in proton therapy have lost their money. Not. The further irony is Emanuel's presence at the University of Pennsylvania, whose proton therapy center is booming. I quote their news release:

Penn Medicine and Virtua plan to build a $35 million proton cancer therapy center on Virtua’s campus in Voorhees (New Jersey), the two nonprofit health systems said Thursday. Penn already has a proton therapy center on its University City campus. Since the Roberts Proton Therapy Center opened in 2010, at a cost of  $144 million, Penn oncologists have treated almost 4,500 patients there, Penn said. The South Jersey center is expected to open in 2020.

“It’s very full, and it keeps growing,” said Ralph Muller, chief executive of the University of Pennsylvania Health System. “Essentially, we’re running it from 7 in the morning until 10 at night, and running it on Saturdays.”

Why didn’t you quote that proton center? Other journalists don’t share your penchant for negativity. You suggest that the new center opened in Washington D.C. may run into problems. But journalists Bonnie Berkowiz and Aaron Steckelberg on March 30th wrote a very positive article in the Washington Post entitled “How proton therapy attacks cancer” with the subtitle being “These once-exotic weapons in the cancer-fighting arsenal are getting faster, cheaper and more common.” (See https://www.washingtonpost.com/graphics/2018/health/proton-beam-therapy/.) Is it more sophisticated to be a critic than to be positive? I don’t think so. But I do think that negativity makes a stronger impact and may be remembered longer. That’s why it comes with a responsibility to use it properly.

Here are some other examples. You pointed out the bankruptcy of Scripp’s proton center in San Diego. They were indeed somewhat victimized by the original developer. I presume you know the story of APT and their four centers (San Diego, Hampton University, Emory University, Dallas). If not, see my blog articles for more details. Here’s what’s going on now with California Protons:

An investor group has converted a significant portion of their debt into ownership interest and provided some working capital, which California Protons plans to use to recruit and retain quality physicians and treat additional patients."What I see going forward is a tremendous opportunity," said Jim Loughlin, managing partner at Loughlin Management Partners, which is working with the physicians and ownership on the transition plan. "We have the only state-of-the-art proton facility in the state of California, and with 90,000 new cancer patients in Southern California a year and growing awareness of proton therapy, we see a tremendous growth opportunity." There is also greater demand from the international community, Loughlin added.

What about the proton center at the University of Maryland, that you mocked for their Survival themed grand opening. I guess you felt it was excessive. You can see the logic, though, since proton therapy produces survivors.

Dr. Regine, of Maryland's school of medicine, said for some patients, there is no debate about which treatment is best. Jim Schumacher, 62, of Seattle is an example. He has chordoma, a rare type of cancer that occurs on the spine. Most of his cancer was removed last year when it was discovered during surgery. Several disks and vertebrae also were removed and replaced with metal rods and spacers. He was referred to chordoma experts at Maryland for follow-up and was relieved to also have access to a proton center. Conventional radiation would have ruined his kidneys.

"I don't know what would have happened if this was 10 years ago," he said alluding to when there was less access to proton therapy. "Proton radiation is my best and only choice."

"The biggest thing I can do for patients is give them hope and that goes with having every available tool in my tool box," said Regine. "And until now I didn't have this tool. We want to make this as widely accessible as possible."

You see, that’s what is really happening, despite their heavy burden of debt, despite not operating at capacity. You might think by being so gung ho I am giving people false hope, but it is a far greater sin to give people false no-hope.

Statistically, the potential market would support ten times as many proton therapy centers. Is the problem excessive capacity? Dubious science? Greedy investors? No. The real problems are resistance by the medical establishment, denial of insurance coverage, and lack of public awareness, combined with confusion and misinformation caused by articles such as yours. Denial of proton therapy causes suffering and even death. Why would you want to be a part of that effort?

Best wishes,

Robert Ferre
Cancer survivor, proton therapy recipient

Here are some links that you may wish to peruse.

My websites:
www.ProtonTherapyBook.com (books)
www.proton-beam-therapy.com/blog.html (blog)
www.proton-therapy-centers.com (centers)

Other response to your articles:

http://www.protonbob.com/2018-06-bt
Brotherhood of the Balloon. Scroll down a bit in the newsletter.

http://www.afterproton.com/ny-times-warns-cancer-centers-we-dont-want-proton/
Ron Nelson in the After Proton Blog. He also responded to a negative article by Melinda Beck in the Wall Street Journal: http://www.afterproton.com/reversing-the-wsj-negative-proton-spin/

http://healthcare.dmagazine.com/2018/06/18/amid-news-that-others-like-it-have-struggled-dfws-lone-proton-therapy-center-says-its-viable-with-room-for-growth/
Texas Proton Center responds to negative articles

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