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CHOOSING YOUR PROTON THERAPY CENTER

 

There are currently thirty-one proton therapy centers in operation in the United States, with a couple more that may open by the end of the year. In choosing a proton therapy center, there are a number of factors to consider. First, however, it might be helpful to get a quick overview of the current scene.

Considering the size of our country and the demand that there should be for proton therapy, thirty-one is a very small number of centers, with a limited total capacity. The extraordinary promise of this technology led to rapid expansion, with the high point being around 2015. Alas, due to a number of issues, such as over exuberance, unrealistic predictions of business, recalcitrant insurance companies, crushing debt and slow acceptance by the medical community, proton therapy has experienced a few bumps in the road on the way to full recogniton. Some centers have not been profitable, a dozen or so went into some form of bankruptcy or reorganization, and many are not running at full capacity. Others, however, are expanding their capacity due to the demand.

None of these problems will thwart the progress of proton therapy. Even if the medical world is slow to welcome it, proton therapy will be demanded by patients themselves. Yet, these circumstances may affect the process through which one may choose a proton therapy center to receive treatment.

Consider for a moment the potential. I have read that some 1.7 million people were diagnosed with cancer in 2017 in the United States, of which 340,000 would be good candidates for proton therapy. (My estimate would be much higher than that.) A number of the existing centers have only a single treatment room. So let’s say that all of the centers together can treat 20,000 people a year. That means we would need seventeen times more centers that we currently have, or 527 centers. Another prediction (MEDRays Intell Proton Therapy World Report 2015) called for 300,000 patients to be treated annually with proton therapy by 2030, only eleven years from now That would require forty new centers to open each year for the next eleven years. Yet, MEDRays recently downgraded their estimate of the growth of proton therapy by twenty percent. What’s going on?

Here is my list of the roadblocks faced by proton therapy.

Failure of doctors to refer patients for proton therapy

It is most likely that your doctor(s) will not suggest that you consider proton therapy. Perhaps they aren’t aware of it. They work long hours and may have little time to familiarize themselves with new technologies. (One could argue, however, that being up to date should be a high priority.) More likely, they want to treat you with their own modality (x-rays, surgery, etc.). That’s how they make a living. In a surprising number of instances, they have fallen prey to fake news and manipulated statistics by the critics of proton therapy. As a result, they don’t feel confident in recommending it. On the internet, you may encounter negative articles. Some of my other blogs address this phenomenon. Such criticism is usually based on bias, outdated material or poor journalism. Don’t believe it.

Unfortunately, to pursue proton therapy you may have to overrule your doctor. I did. He or she may even be actively opposed to proton therapy, convinced that you are making a big mistake. To proceed in the face of such opinions takes guts. How many people have the confidence to do that?

Two years ago I gave a talk about proton therapy to a group in San Antonio in which I described how superior protons are in avoiding unnecessary damage, especially when it comes to brain tumors. Afterwards, a man named Gary Davis came up and told me this story. When he was diagnosed with a brain tumor, his doctor sent him to a radiologist at M. D. Anderson in Houston. Likely his family doctor knew little about proton therapy and was very familiar with sending patients for x-ray treatments, as he had been doing for many years. Gary went to Houston and was subsequently treated with x-rays, from which he suffered significant cognitive damage.

He asked me, “Why didn’t they tell me about proton therapy if they have it there at M. D. Anderson as you said?” Indeed, they have a proton therapy center, yet they prursued a less desirable course of treatment. I'm writing this on a Monday. This Friday is Gary's funeral. I got to know him, and he never let go of that question and the possibility, if not the likelihood, that he could have received a better outcome. There are huge ethical questions involved when doctors fail to refer their patients for proton therapy.

If your radiologist, urologist, or oncologist doesn't refer you for proton therapy,don’t let that deter you. At least get a second opinion, preferably at a proton therapy center. At the very least send them your biopsy results.

The public doesn’t know about proton therapy

I have seen ads now in airports, in airline magazines, and on television for proton therapy. I believe that's the best way to go. The public needs to know about proton therapy. Right now, however, if you tell your friends or relatives that you are considering proton therapy, they may not know what you are even talking about. To help resolve this vacuum of information, I have written two books and started three websites about proton therapy.

Lack of insurance coverage

This is the number one biggest stumbling block for proton therapy. I believe it is criminal that insurance companies put their profits before the welfare of their policy holders. There have been some high profile judgments recently against insurance companies for refusing to cover proton therapy, and there are more class action suits being formed. I have written about this in some detail in other blogs.

In an article called “Three Ways to Make Proton Therapy Affordable” (https://www.nature.com/news/three-ways-to-make-proton-therapy-affordable-1.22660) authors Thomas R. Bortfeld and Jay S. Loeffler make this statement:

If cost was not an issue, proton therapy would be the treatment of choice for most patients with localized tumours.

But cost is an issue for insurance companies. There are, fortunately, ways to overcome the lack of insurance. For example, you can be in a trial or registry. Even then, participation doesn’t necessarily assure that your treatment will be paid for. I am on a Medicare registry that will follow me for the rest of my life to see how well proton therapy works. For that, Medicare paid 80% of the cost of my treatment.

All of this is a bit of a catch 22. Insurance companies demand more studies and more data before they are willing to cover proton therapy. However, in order to get patients into the trials, they need to receive the treatment, which means coverage by insurance companies. In some cases, insurance companies will agree to cover your proton therapy if you are part of a trial. Be sure to check on that. If you are under 21, most insurance companies agree that pediatric cancers should receive proton therapy. If you are over 65, Medicare will cover most types of proton therapy. It is totally illogical, then, that insurance companies feel that proton therapy is unproven only for people between the ages of 21 and 65.

Proton therapy centers have expertise in gaining coverage from insurance companies. Even if you think your policy won’t pay for proton therapy, still have a proton therapy center look into it. You may also start some kind of legal action, which may lead the insurance company to go beyond their policy of automatic rejection.

Insurance ccompanies are adverse to covering the higher cost of proton therapy. They cover x-rays because the initial cost is half as much. But over the long run, when you include the price of treating the increased side effect for x-rays, the cost actually becomes comparable. Nevertheless, some centers have decided to remove the cost barrier by charging the same for proton therapy as for x-rays. That is true at the two Mayo Clinics (Phoenix, Arizona, and Rochester, Minnesota), for example. They raised the money to pay cash for their two $180 million dollar centers, so they don’t have the crushing burden of debt that some of the larger centers have. I believe the proton therapy centers at the Universities of Pennsylvania and Maryland also charge the same as for x-rays. If I was turned down for insurance coverage at one of the more expensive proton centers, I would see if I could get coverage at one of the above centers.

Misinformation and undue criticism

This is one of my biggest pet peeves. The internet is both a blessing and a curse. You can find my blog, for instance, or you can get poor advice such as I show below.

On the website for Valley Gamma Knife (a form of x-ray treatment), they make this unsupportable statement: “While both Gamma Knife radiosurgery and proton beam therapy can be used to treat brain tumors, only Gamma Knife can reliably be used to perform highly focused treatments such as stereotactic radiosurgery.” They proceed to give a completely bogus comparison between Gamma Knife and proton therapy, which is summarized in this graphic:


The third category quantifies accuracy. They say that proton therapy is only accurate within a margin of 20-30 millimeters. Bullroar. That’s more than one inch! In fact, pencil beam scanning can be pinpointed to within fractions of one millimeter, far more accurate than their CyberKnife. The above graphic is a gross example of deliberate fake news. Sheesh. How is anyone supposed to make a decision with such misinformation being presented as if it were authentic. Their comparison goes on to describe potential side effects, claiming they happen with both x-rays and proton therapy, thereby implying that the side effects are equal for both modalities. This denies the greatest strength of proton therapy, which is that it damages less healthy tissue and has fewer side effects than x-rays. If there is any information that they want to distort or cover up, this would be it. And so they did. I can't express how aggravated I am that innocent people seeking dependable information would be so misled by this false advertising. If they show a lack of ethics in this regard, how could you trust anything else they say or do?

The most common criticism of proton therapy is that it is new, unproven, and experimental, whereas x-rays have been around for a long time. There are, in fact, hundreds of studies that show the effectieness of proton therapy. The first center (Loma Linda, California) was opened alost thirty years ago. Proton therapy is not new, nor is it experimental And it is certainly not unproven. Just ask anyone who has received it.

Similarly, surgeons like to call prostatectomy “the gold standard” when it fact it is most often the worst of the choices for a variety of reasons. When patients are asked if they would recommend the modality they experienced to others considering what treatment to choose, surgery is way at the bottom and proton therapy is at the top. Everything else is in between, including x-rays.

To avoid fraudulent claims, here is something you can do. Search for your particular type of cancer on a respectable website, such as PubMed, a database of the National Institute of Health (https://www.ncbi.nlm.nih.gov/pubmed/). For example, search under “breast cancer and proton therapy.” You will find many articles that give the results of real trials and studies. Even then, however, you may need to be cautious, because the design of the trial may be such as to guarantee a particular outcome. I discus a particularly egregious examples of this in one of my other blogs. This oft-cited study purportedly shows that proton therapy for lung cancer has more side effects than x-rays when a true analysis actually shows exactly the opposite. It’s a wild world out there, folks.

Cost

There is a considerable difference amongst centers as to cost. I went to Knoxville, Tennessee, even though there are two proton centers in my home state of Texas, because they offered me the chance to be on a Medicare registry. Once Medicare paid 80% of the cost of my treatment, United Healthcare agreed to pay the other 20%, less my significant copay of $5,800. Including my copay, non-covered items, travel, lodging, and all other expenses, my eight-week stay in Knoxville cost me about $12,000. We are fortunate to have been able to absorb that cost.

Once you are further away from home than commuting distance, it seems to me how far you go is irrelevant. Knoxville was no different than Houston or Dallas, except for the two-day drive. So why not go to the one that will serve your needs best. Before I found out about being on a registry, I thought I might have to pay for my treatment out of pocket. I was considering going to Prague, where the treatment would cost about $30,000. When I called M. D. Anderson they wouldn’t give me a cost until I came in and had a consultation with a doctor. The University of Florida in Jacksonville told me the out-of-pocket cost was normally $164,000 but they could give me a cash discount of $134,000. When I called Provision in Knoxville, I was given a cash price of $93,000 for exactly the same treatment. These are not insignificant differences: $30,000, $134,000, or $93,000. Cost alone is a reason to pick your proton center carefully.

When I called Provision to ask the cost, Samantha asked me if I was on Medicare (which I am) and proceeded to tell me about the registry. Less than a month later I arrived for treatment. Other centers were not as responsive to my situation. In one conversation with M. D. Anderson, I mentioned that I had a Medicare advantage plan with United Healthcare insurance. The person on the telephone said, “I don’t believe they cover proton therapy. So sorry.” That was it. Good bye.They must have all the business they can handle. Provision was far more interested in my business, and earned it.

An excellent article in Radiology Today by Beth W. Orenstein (https://www.radiologytoday.net/archive/rt0215p22.shtml) titled “Proton Therapy and Cost” makes some excellent points. The investment in proton therapy, it states, is up to 40 times that for x-rays. Wouldn’t it follow that it should cost more? At Provision where I was treated, sixty people interacted with me on some level. Thats several times the personnel needed for x-rays.

I don’t want this article to get too long, but here is an example of a favorable calculation for proton therapy. Eric Strom, MD, FACR, is the principal investigator of a clinical trial sponsored by the National Cancer Institute at the University of Texas MD Anderson Proton Therapy Center to determine whether patients with early-stage breast cancer could benefit from accelerated partial breast irradiation (APBI) with proton therapy vs whole breast irradiation (WBI) with x-rays. Strom had people say to him, "You're wasting time doing this clinical evaluation of proton therapy for breast cancer because it would be too expensive for patients even if it did prove to be better."

Believing that statement to be wrong, Strom and his colleagues did a separate cost analysis based on typical patient characteristics. They used Medicare reimbursement codes to analyze allowable charges for eight different types of partial breast irradiation and WBI therapies and treatment schedules available to early-stage breast cancer patients. 

"Taken together, these represent roughly 98% of the treatment options available to these patients," Strom says. Their analysis was as they expected: The total allowable charges for proton APBI, completed in 10 treatments over one week, were estimated at $13,833. Comparatively, WBI for six weeks using IMRT resulted in the highest Medicare charges at $19,599. Multicatheter brachytherapy approaches to APBI also had higher total charges than proton APBI. The average charges across the eight treatment regimens were $12,784. Thus, proton beam APBI costs were similar to that of other types of radiation, Strom says.

Perhaps it is a theoretical topic to some pundits, but not to us patients. Unnecessary damage and side effects are a big thing. The insurance company may not care if I wear diapers for the rest of my life, but I do. I started my treatment on Sept. 1, 2016. I’m approaching three years post-treatment. My PSA went from 16.0 before treatment to 0.30 as of last week. Is it worth it? Absolutely. And now, as with all technology, the costs are coming down and there are continued technical improvements. The promise remains bright. But that bright future is just that, something yet to be fully realized.

Availability

Timing is another consideration. M. D. Anderson, for example, is so famous that they are swamped with business. In fact, they didn’t even bother to answer some of the telephone messages that I left, asking for information. Getting into their schedule may involve a long wait, which is the last thing you want when you are anxious to begin treatment. Provision was able to take me right away. The delay of a month was on my part, tying up loose ends to be away for two months. That was no hardship. My daily treatment took twenty minutes and was painless. The rest of the day, and the weekends, were free time. We went to Kentucky, and down to Gatlinburg and generally had a fine time, a true “radiation vacation” (as they say).

Technology

Technology matters. The introduction of pencil beam scanning five or six years ago took proton therapy to a much higher level of accuracy. Many of the claims by critics that protons are no better than x-rays come from studies that predate pencil beam scanning. Hence, they are no longer relevant. This technology increased the number of cancers treatable with protons from 15-20% to 80%. Hence my second book, Proton Therapy: Revolutionary Treatment for 80% of ALL Cancers. When people ask for my opinion on where to go, I always suggest the most recent center to open. That would include Miami, Florida, for example (see photo below), or Franklin (Nashville). The center in New York City just opened. That would be a good place. Plus some centers are experimenting with taking proton therapy even further. In Beaumont, Michigan, for example, they are developing a technique in which the proton gantry actually rotates to send the proton beam from an array of directions, much like IMRT for x-rays. Go for the best technology. Several centers such as St. Louis, Mass General (Boston), and the University of Florida (Jacksonville) are expanding their facility with new equipment that will offer pencil beam scanning.

Location

Location isn’t high on the list, but if you have a choice, why not pick a lovely setting, such as Provision. Want to travel? Go to Prague or South Korea or Switzerland or the Netherlands. Here’s the bottom line. When your very existence is being threatened by cancer, you go anywhere and do anything it takes to beat it. Traveling to a distant proton center is a small matter. That being said, some patients can’t leave their job or family or home, which precludes them from receiving proton therapy if they live outside of commuting distance. It such cases, the small number of proton therapy centers becomes relevant.

If I had been told that the only way to overcome my prostate cancer was for them to chain me to a wall and beat me every day, I would have said “How soon can we start?” Fortunately, I had a much better alternative: proton therapy. I know of one man who mortgaged his house to pay for proton therapy. Now, ten years later, he is still paying off the mortgage, but he is alive and healthy.

The future

The glowing statistics of potential business for proton therapy hasn’t always panned out. But THEY SHOULD. The problems discussed above will be solved, sooner or later. You don’t have to wait for more studies. The future is here today. Find yourself the right proton therapy center and find out for yourself.

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