Seriously ill? Coverage denied? Here’s what you can do

Why do hospital bills get so expensive?

Filing an appeal for denied coverage with your health insurer can be a bureaucratic mess even in simple cases, like coding errors.

But for seriously ill patients, particularly those with late-stage cancer who want to undergo new and perhaps unorthodox treatments, the hurdles can multiply, sometimes exponentially.

As new cancer treatments like immunotherapy and proton beam therapy emerge, patients may face unexpected hurdles to get access to these treatments. That's because insurers, who operate under the premise of paying only for "standard of care," may routinely deny these out-of-the-ordinary treatments, creating miles of red tape in an appeal.

For seriously ill patients, the clock is ticking. Plus, they may be too sick to fight for themselves. That may leave it up to family members and other caretakers to understand how the appeals process works. Here's a preliminary roadmap.

Going beyond standard treatment

Seriously ill patients may have already exhausted standard treatment for their disease, such as after receiving certain amounts of chemotherapy and radiation. In those cases, milestones like test scans may signal whether a patient's treatment should be re-evaluated or if they should look for new treatments.

In some cases, a patient may want to shift from their community health provider to a research hospital or global cancer care center. If a switch makes sense, find out if the facility is in your insurer's network, and if not, learn what you and your providers need to prove the new treatment is "medically necessary" -- and not available in your local market.

The patient or their advocate should to be ready to work with the insurer more aggressively, said Pat Jolley, director of clinical initiatives at the Patient Advocate Foundation. These appeals can prove to be a tough hurdle, Jolley added. 

"It's important to have sound medical research and your providers helping you launch this appeal," she said.

Advice: Get in touch with your provider's billing office and that of the treatment center where you want to go. You may be assigned a case manager who can help you navigate this process.

Understand the external appeal

When you or your advocates are pursuing a therapy that an insurance company determines is beyond the standard of care, you have the option of requesting an external appeal. 

The external appeal is only available to patients who have gone through the other appeal processes outlined by their insurer. In other words, you'll need to deal with standard denials first. 

An external review is comprised of a panel of three medical experts. Sometimes these experts are left wanting, while other times they are quite smart.

That's why it is important for you or your advocate to determine if everyone on the panel is qualified to review your medical situation. There have been cases in the past where some of the panel members have been qualified in name only.  Be sure to have an advocate check the qualifications of your external appeal panel.

Advice: On this type of appeal, make sure your research and documents are organized and convincing. You may find you need to call in some expert help, such as Consumer Assistance Programs offered by many states.

What expedited means

Expedited requests are particularly important for seriously ill patients. For instance, say you have late-stage lung cancer and your doctors think you would respond to a new therapy right away. They file for pre-authorization, but no luck: your insurer denies the treatment based on standard of care.

At that point, your oncology team will likely appeal on your behalf to get the treatment on an expedited basis. But you may still need to be involved to provide details.

Remember, only you and your providers can determine what care is right for your individual case.

Advice: For more information on filing appeals of all sorts for all types of patients, please contact the Patient Advocate Foundation.

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