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Should you be a litigant?

February 13, 2019

Since the last blog posting, I have developed more interest in the legal aspects of challenging insurance companies that fail to approve proton therapy. I think that is a good way to force then to be more cooperative in their consideration rather than just rejecting such claims out of hand.

There are a number of avenues for pursuing legal work. However, with the attorneys to whom I have talked, one of the biggest problems is actually finding the people who have been unfairly rejected for proton therapy. Perhaps you are such a person. Perhaps you have a case. It sees to me there are several possibilities here.

The first is those who, once their claim was rejected and their appeals turned down, raised the money to still get proton therapy and still would like to be reimbursed by their insurance company. It is unfortunate that patients have to raise money on the internet or mortgage homes in order to get a treatment that should be covered by insurance. Presumably after their treatment, their cancer has been eradicated and is no longer present. Yet, the struggle goes on for getting payment.

A second category is those who still received proton therapy, but the fight for approval took so long that there was a negative outcome. In the big Aetna case, the patient was eventually treated, but too late, and she died shortly thereafter.

Or perhaps the wait resulted in metastases that then required more pain and suffering in getting it treated. Certainly that could be he basis for some litigation. When driving into town, I pass many billboards with ads for personal injury lawyers. “Were you in an accident? Call us and we’ll get what you deserve.” I have some qualms about how ethical some such claims may be, or the profit motivation of the attorneys. But what if there were billboards that said, “turned down for proton therapy? Call us.” Of course that is unrealistic, but it addresses the issue of public awareness of their legal rights.

A big category, it seems to me is the people who were told that their insurance company wouldn’t cover proton therapy and attempting to get it would require along drawn-out battle. With cancer, time is not in the patient’s favor, so a long delay is a powerful threat. Facing such a possibility, many patients agree to give up their intention to get proton therapy and instead receive a treatment that is covered, such as traditional X-rays. With what result? Can there be some compensation for the resulting unnecessary pain and suffering, especially if the outcome didn’t turn out well? What about cognitive impairment, which could have been avoided with proton therapy. Or heart or lung damage when being treated for breast cancer. Wouldn’t that be malpractice?

Speaking of malpractice, what about doctors who refuse to refer their patients for proton therapy? There are myriad reasons for such failure, including wanting to make money by doing surgery or radiation themselves. If they claim proton therapy is still experimental, and they were unsure of its efficacy, can such a position be challenged?

While there is no shortage of attorneys willing to take on potentially lucrative settlements, there are numerous roadblocks. If there were an attempt to put together a class action suit, for example, how can individual cases be grouped together, when each case is unique? Perhaps if the insurance company has a procedure that automatically rejects proton therapy without being judged by a qualified examiner, then all of those who were refused might make up such a group. But how would anyone find out about such cases? Insurance companies are certainly not going to volunteer the information.

Similarly, how can attorneys find out about people who have been turned down for proton therapy? There are two different cases. One is to take legal action to force the company to pay for proton therapy. Such an effort would need to be timely, and would likely involve a fee paid by the patient for the legal work. The other possibility is after the rejection, when damage has been done either by not being treated in a timely way or by being treated with a lesser technology. In extreme cases, the patient may have suffered and died. How do people in such circumstances discover their legal rights? How can attorneys find them? It’s not like they are listed on the internet somewhere.

I want to look into state offices regulating insurance claims. If claims are rejected and the claimant goes to the state for satisfaction, are such records public? What about support groups? Do they know legal as well as medical possibilities? Perhaps proton therapy centers themselves, cognizant of such abuses by insurance companies, could steer the patient toward legal representation. They could work with specific local attorneys, or perhaps seek help from firms with national representation. I imagine the attorneys in the Aetna case are now getting numerous inquiries about similar suits.

I am not offering legal advice, any more than I am offering medical advice. I am simply a patient advocate for proton therapy. However, if either attorneys or potential plaintiffs contact me, I will gladly try to get the right parties together.

In March when I go to the annual conference for the National Association for Proton Therapy (NAPT), I hope to talk with others who are also looking into this subject. Doug Terry, the attorney in the Oklahoma Aetna case was invited to speak at the conference, but will be in Europe. That shows that there is an interest there. This is far more important to me than learning about medical protocols. Insurance coverage is perhaps the largest hindrance to the advancement of proton therapy, right after misguided negative press articles.

In my experience, proton therapy centers have become quite expert in presenting the claim to the insurance companies as medically necessary. They are also able to handle the various appeals. This being said, there may be a difference from one center to another as far as their expertise and their success rate. This might be something to be considered when choosing a proton therapy center.

In my case, after being diagnosed with prostate cancer, I called M. D. Anderson in Houston and mentioned that I had United Healthcare. I was told, “Unfortunately, as far as we know, United Healthcare doesn’t cover proton therapy for prostate cancer. Sorry.” That was it. End of phone call. No other advice. When I called Provision in Knoxville, Tennessee, they immediately told me about Medicare’s registry for tracking the results of proton therapy. By getting on that, I was able to get 80% of the cost of my treatment paid for. Then United Healthcare agreed to pay the remaining 20%. I’m sure glad I didn’t give up after my initial call to M. D. Anderson and assume I would have the same results everywhere. I was resigned to going abroad for treatment, paying out of pocket. Thankfully, that wasn’t necessary.

Of course Medicare is only available to those old enough to qualify. That leaves out people who are younger and facing cancer diagnoses. Some states, such as Oklahoma, have passed laws requiring insurance companies to properly consider proton therapy without presenting additional obstacles. But that doesn’t mean the insurance companies comply with the law. See my previous blog on that subject.

In the end, I think litigation is a good strategy. Even though insurance companies have deep pockets, eventually they might get the message that their intransigence is more costly than coverage.

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Meanwhile, you may want to check out our two other 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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