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Getting Insurance to Pay for Proton Therapy

February 8, 2017

For all medical issues, insurance is a critical consideration, such that in my book I have two chapters on the subject. For those who prefer to do their own research or aren't able to benefit fro what I have written, I have included in the discussion below the general principles and links to the sources I found helpful.

Insurance coverage was the determining factor for my treatment decision. After deciding that proton therapy was my first choice, Several proton centers I called informed me that my United Healthcare Secure Horizons AARP Medicare Advantage HMO plan did not cover proton therapy for prostate cancer. Searching on the internet, I found a policy statement by United Healthcare that said the same thing. It seemed that I was doomed to pay for the treatment myself.

In such case, it would be less expensive to go abroad. My choice was the proton therapy center in Prague. WEBSITE HERE. Staying there for five or six weeks (they do twenty-one fractions/treatments) including the treatment, travel and lodging would be around $40,000. As usual, my wife Linda supported me and was willing for us to liquidate some of our modest and valued retirement savings. I went so far a searching for airBnB accommodations, even writing to one or two. On such short notice, however, they didn't have such a long period available.

I decided to check how much different centers in the United States charged. The proton center at the University of Florida in Jacksonville said it would be $134,000. Most of the centers said they couldn't give a price until I came in for a consultation. Samantha, at Provision Center for Proton Therapy ni Knoxville, Tennessee, answered that their cost was $93,000 (quite a difference) and then asked if I have Medicare insurance. When I said yes, she informed me that they have a program in which Medicare will pay 80% of the cost, regardless of my insurance policy.

I was skeptical. Such news was too good to be true. Why hadn't any f the other centers mentioned such a possibility? It turns out that Medicare is administered at the state level by independent companies calls MACs (Medicare Administrative Contractors). Provision sent me the sheet for their MAC, called Cahaba SOMETHING, which covers Tennessee. Viewing a number of documents (all of which are included in the book) I determined the following.

For conditions in Group One, Medicare covers proton therapy outright. As such, insurance companies must also cover it. Alas, prostate cancer isn't in that group. Rather, it's in Group Two, for which proton therapy is covered by Medicare as long as certain special conditions are met. In this case, the condition was that I be enrolled in a registry that would track the results of my proton therapy for the rest of my life. No problem there. Then, Provision convinced United Healthcare to do two other things. First, they covered all of the incidental expenses as if I were in network, and secondly, they would cover the 20% not covered my Medicare, subject to my deductibles and maximum out-of-pocket expenditure, which was $4,900. So that is what I paid. For 2017, the maximum has been reduced to $3,900. Go figure.

In the event that you go to a center that does not have a registry such as this, you can still try to convince your Medicare insurance policy to cover it. If not, there is an appeal process that may be successful. There are three levels of appeal. First, you appeal to your MAC. If that fails, you can appeal to an independent contractor who offers that service for Medicare. And as a last resort, you can file for reconsideration. Here is the link describing the process: LINK Here is a story of someone who did just that.

For Medicare beneficiaries, there is a separate, federal appeals-review process. That is what Ellen and Paul Hoppe used after Health Net of California, the Health Net Inc. unit that provided Mr. Hoppe's Medicare Advantage plan, declined to pay for proton-beam radiation for his prostate cancer. The denial document said there was no evidence that Mr. Hoppe, 67, would get any added advantage from proton-beam therapy, which is significantly more expensive than conventional X-ray radiation.

The Hoppes, phone-company retirees in California, were convinced that proton-beam therapy carried a lower risk of side effects such as incontinence. They got backing from Mr. Hoppe's doctor at Loma Linda University Medical Center, who wrote a six-page letter, including two pages of research citations. In June, Medicare's appeals contractor sided with the Hoppes, saying the proton-beam therapy qualified for the federal standard of "reasonable and necessary" treatment.

Note: The above story took place in 2008.

If you are too young to be on Medicare, there are a number of other insurance strategies. I cover them in the book, but you can go to the same sources that I used at the following links.
The blog at Provision Center for Proton Therapy
Brotherhood of the Balloon website.
Wall Street Journal Article

Here is another story from my book.

Besides the appeal process, you can try to apply leverage in a different way. One man I met from Ohio was forced to fight Cigna tooth and nail for coverage to get PT for his esophageal cancer, even though that is one condition for which PT is notably superior. It took five months and the intervention of his congressman before Cigna relented and he went to Provision for treatment. Unfortunately, by then, the cancer had metastasized to his bone.

The key to insurance coverage is medical necessity. Insurance copanies take the position that x-rays are just as effective in eliminating cancer. That may be true, but the side effects are much greater. Fo course the insurance company doesn't care if you wear a diaper for the rest of your life or never get an erection again. The real complaint, however, is cost. Proton therapy costs twice as much. However, this is about to change. Very rapidly, as with any technology, the equipment is getting smaller and less expensive. While Provision, where I went, spent $130 million for their center, many have paid as much as $200 million and more. With that kind of overhead, treatment cost is high. One center, in Indiana, closed and others have faced bankruptcy during the building stage.

Provision has a sister company that has begun manufacturing smaller equipment, for which a full treatment center cost well under $100 million. LINK Some other companies, such as Varian and IBA, offer single treatment rooms for $40 million or less. I feel certain that within a couple of years, costs for new centers will be much less. The existing centers, with their larger debt service, will have to find a way to adapt.

While making my list of centers (see I discovered two places, namely, the University of Pennsylvania and the University of Maryland, in which they charge the same for their proton therapy as the cost for x-rays. Although there might still be an issue of medical necessity, I suspect that with an equivalent payment, insurance companies might be willig to pay. Just as Provisions expertise with insurance companies and its Medicare registry will surely attract people to them, so might the places that choose to offer reduced prices.

While the last method of having you treatment paid for is not insurance, I will include it here. You can be part of a clinical trial. This pertains for any type of cancer. On you will find thousands of trials, of which perhaps a dozen or so may apply directly to prostate cancer. You must meet the criteria as far as the nature and progression of your cancer are concerned. Most of the trials are blind, whic means you will be picked randomly to be in one or another group. Unfortunately, in the trials comparing proton therapy to x-rays, for example, you can't predict in advance which group you will be chosen for.

So, there you have some insurance strategies. Surely other proton centers will have registries, such as the one that got my proton therapy paid by Medicare. On the same registry as Provision is a private cliic in Florida (Ackerman Cancer Center). Shortly, a third will be joiing them, the Texas Center for Proton Therapy. Note that these are registries for proton therapy, not specifically prostate cancer. Other types of cancer are also included. Anyone with breast cancer, lung cancer, head or nckt cancers should consider proton therapy for its amazing accuracy and miimal damage to healthy tissues. The details for all of the centers mentioned here are included in the list of centers, but for your convenience, I have included their website addresses below.

Provision Center for Proton Therapy:
Ackerman Cancer Center:
Texas Center for Proton Therapy:
Roberts Proton Therapy Center (Philadelphia):
Maryland Proton Treatment Center:

I would like to know of successful insurance strategies. If you have examples other than the types I have included here or have been successful in getting coverage for proton therapy, please let me know at this address:

Here again are my other two related websites:
This is dedicated to Robert Ferre's book Best Prostate Cancer Treatment: Proton Beam Therapy. It has updates and additional information, photos, and more.
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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