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Here is a typical email that I received not long ago.

Our son was diagnosed with Stage III Esophageal Cancer. He was in- network for Mayo- AZ (Mayo Clinic in Arizona).  His radiation oncologist recommended 28 Proton treatments. Aetna denied coverage,  IMRT (x-rays) was covered. We decided to self pay and are making monthly payments.  Our son has appealed - hoping to recover our payments.

They asked if I had any suggestions. Before I answer, let me repeat how disgusting it is that Aetna continues to deny coverage for proton therapy. This must and will change, but they will likely hold on to the last moment, cause immeasurable pain, suffering and even death to preserve their bottom line. This is what is wrong with our healthcare system as opposed to every other First World country, which all have universal healthcare. They consider it a right. It is not free. People pay higher taxes in those countries. But they get much better coverage at a fraction of the cost. Our system may be more responsive in some ways, but being profit-based, money comes before people.

Take my Medicare Advantage plan, for example. Medicare pays them a certain fixed amount, for which they provide me with healthcare. The more they spend on me, the lower their profit. So a few years ago when I was sick, I went to my doctor. He did no tests, told me to go home and rest, I probably had the flu. Two days later I flew to Puerto Vallarta, Mexico, for my annual timeshare vacation. I figured it was a good lace to recover. I went to the hotel doctor and he called an ambulance which took me right to the hospital. I had double pneumonia and almost died. The treatment I got there was what we wish we could have here. The hospital (San Javier) was not over crowded, the nurses wore lovey starched white uniforms and didn’t seem stressed out, the doctor was sharp, the food was excellent. My three days cost a total of $8,000. When I got home, my insurance company resisted paying. I persisted, saying they were crazy. They should be chartering planes and sending people to Mexico for treatment. In the end, they reimbursed me.

I get asked frequently about insurance coverage. You see that I have other posts about the subject, which is also covered in my books. Here is my current advice on getting coverage for proton therapy.

1. Don’t accept rejection of your request for coverage. Aetna and other insurance companies as a matter of policy say no to most requests for coverage, which causes a large number of people to submit to their ruling. Employees are sometimes rewarded for being good at thwarting insurance coverage. However, those who fight for coverage are in many cases successful. Hang in there.

2. Get the right documentation. You will need the assistance of your doctor and perhaps other professionals. Most proton centers are very experienced in this regard. I was treated at Provision in Knoxville, Tennessee, where they have six people working in the insurance department. The same is probably true with other proton centers, as well. I have not been very pleased with the responsiveness of M. D. Anderson in Houston. They are so huge and so famous that they are swamped with business. I made some inquiries there, and my calls were never even returned. I don’t know how hard they would help fight, as they don’t really need to get clients that way. Loma Linda University proton center in California told me that they are very good at convincing insurance companies to pay, but that may have only been for California residents.

3. Are you old enough to be on Medicare? If so, you can be in a registry, as I was, which will result in Medicare paying 80% of the cost, regardless of your insurance policy. For me, once Medicare paid 80%, Provision got United Healthcare, which also said no to proton therapy, to pay the other 20%.

4. Shop around. I asked the proton center at the University of Florida in Jacksonville the cost for my proton therapy for prostate cancer. They said $134,000. When I asked the same question of Provision, they said $93,000, for the very same treatment. Actually, better, as Provision’s equipment is more advanced.

5. A few proton centers charge the same for proton therapy as for x-rays. This is true, I believe, for the two Mayo Clinic centers (Phoenix AZ and Rochester MN), the University of Pennsylvania, and the University of Maryland centers. Perhaps if proton therapy didn't cost more than x-rays, insurance companies would be more likely to approve your treatment. (Sometimes they still don’t agree to pay, not wanting to be so obvious that it was all about money. They still claim it isn’t medically necessary, or is unproven.)

6. Go abroad. If you are paying for treatment yourself, it is cheaper to go abroad. I almost went to Prague to the very excellent center there. Rather than the $93,000 at Provision, they were going to charge $33,000. With travel and lodging, I estimated the cost to be $40,000. 

7. Get into a clinical trial. They usually will randomly pick which people get proton therapy and which get some other treatment, to which protons are being compared. I know of people who have turned down joining a trial, because they wanted to be sure they got proton therapy. However, if you have no insurance or are unlikely to get your cancer treated in any other way, assuming you fit the trial criteria, this could be a way to get treated. There are many trials going on regarding proton therapy.

Here are some resources for getting help:
This is an organization founded to help get insurance coverage for proton therapy. They have both success stories and failures. Perhaps they can help you.
This is the National Association for Proton Therapy. They have an extensive section on insurance coverage. Under the patient resources tab, click on insurance strategies.
This is my website, which lists proton therapy centers, including the ones I have mentioned above, with phone numbers and websites. You may want to call several, to compare. I have been very impressed with the Texas proton therapy center. You might want to include them on your list.
This is the website for Provision, where I was treated. They have six people working full time on insurance issues. They did very well for me. When you request treatment, before the admit you, they make sure they will be paid. So, they will look at your insurance coverage in great detail, and do what it might take to help you get coverage.
Once on the opening page, look under the tab "About Proton Therapy" and click on "The Top Ten Myths About PRoton Therapy." There you will see counter arguments to many of the misstatements about proton therapy.

See my book: Introduction to Proton Therapy: Revolutionary Treatment for 80% of All Cancers. It is currently only available as an eBook for kindle, on Amazon. It costs $5.95.
About my other proton therapy books
A list of current proton therapy centers in the United States
The National Association for Proton Therapy
The international Proton Therapy Cooperative Group (Switzerland)


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