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Patient advocates have long helped people navigate the healthcare system to get better treatment. Now a new field of advocates is helping people navigate the insurance system as well, assisting with denials and delays. Three experts in the field discuss how to fight your insurer and win.

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  • Elisabeth Schuler Russell, founder and President, Patient Navigator LLC
  • Brendan Bietry, case manager, Patient Advocate Foundation
  • Laurie Todd, author, Fight Your Insurance Company and Win

Links for more information

16-30 Fighting Your Insurer

Reed Pence: For a lot of people, the healthcare system has become impossibly complex. That’s why patient and healthcare advocacy has become not only more common over the last five or six years, but more necessary. A patient advocate, or patient navigator as they’re sometimes called, is someone who does just that – helps the patient navigate the healthcare system to get the care they need. However, the field is so new, there’s often little consistency from one service provider to the next.

Elisabeth Schuler Russell: The term is so broadly used now that there is no single definition.

Pence: That’s Elisabeth Schuler Russell, founder & president of Patient Navigator LLC.

Russell: In a hospital, navigators- their job is primarily to coordinate care within the treatment plan within the facility, help make appointments, help arrange transportation if necessary, just the goal in organizational help. And then at the private level, there are people like me whose services depend on how they structure their company. Some advocates focus primarily on cancers, some focus mostly on the senior citizen population. It really depends. Some do only medical billing and insurance advocacy. So it really depends on how the person structured their company and what their strengths are, what they like.

Pence: Russell says that for now, just about anyone can hang out a shingle and call him or herself a patient advocate or navigator, but she expects that will change in the near future.

Russell: There is no formal degree for this except at Sarah Lawrence, there are a lot of online programs that have sprung up in the past six years. But there is no national credential such as a social worker would have credential from his or her state and so forth. But an effort is underway to create such a national credential that will be recognized in every state. But its been a long process because this is an infant profession.

Pence: According to Russell, there are only about 200 private advocates around the country. They’re distinct from the clinically trained hospital navigators and those at community level organizations, such as the American Cancer Society.

Russell: We are not covered by insurance. Now we probably save the insurance companies a lot of money by reducing errors, by knowing when a redundant test is about to take place, etcetera, but its actually better because we work only for our clients and families. We have no conflict of interest with anyone so we don’t work for the insurance, we don’t work for the provider, its uniquely targeted to help the patients and families get the care they need and overcome any obstacles to that care.

Pence: However, once you’ve gotten the care you need, a lot of people still need an advocate to help navigate paying for it all. Dealing with insurance can be exceptionally confusing, and Russell says relatively few advocates are prepared for it. There’s a lot involved in helping patients manage medicals bills, explanation of benefits statements or EOBs, and in many cases, appealing denied health insurance claims.

Russell: No, not everyone helps with medical bills because its complicated and frustrating and time consuming. And some people just don’t like that part of the job. So I would say you know, when you’re looking for an advocate, try to choose one who specializes in that work, because it’s a universe onto itself and its very stressful.

Pence: Few people do it… Yet Russell admits there is a great need for this particular kind of advocacy.

Russell: Once something complicated is launched, like a liver transplant or a cancer diagnosis, the medical paperwork is absolutely overwhelming and you need to find a way to keep it organized. And to know what you’re doing so that you’re not paying the wrong thing, so that you are being correctly covered by the insurance company. There’s just lots of ways things can go wrong and it’s very stressful for patients to have to deal with that and God forbid they have to get on the phone with the insurance company.

Pence: Fortunately, however, there are some healthcare advocates out there uniquely groomed for this type of work.

Bietry: I have a background in pre medicine and case management. Also I have a research background, I’ve always wanted to do something in the human service or humanitarian field and you know, appeal work is not for the faint of heart or for those who, you know, don’t have a bit of persistence and drive. We really have to work together and toward a positive solution.

Pence: That’s Brendan Bietry, case manager with the not-for-profit patient advocate foundation.

Bietry: There are various reasons why insurance would deny a claim and many of it, the basis is the lack of medical necessity or perhaps it’s a service that’s outside of the standard of care or somewhat experimental or investigational. It may be a service that it’s excluded or it’s not on the list of covered drugs under a certain health plan.

Pence: So what do you do when that happens? Bietry says when your insurance company pushes back on a particular service or treatment… Get your medical team on board.

Bietry: You want to make sure that both your primary and your specialty medical providers, whether they be physicians or a pharmacy or an imaging center, wherever that might be relevant, that they’re on board and that they understand that they need to kind of step up to the plate and provide medical records and perhaps a supportive letter if that’s necessary.

Pence: Bietry says patients and caregivers need to be well organized…but also well educated about their particular insurance plan and benefits.

Bietry: Keep a chronology of their medical appointments or dates of service and also understand that their health plan language, many of these, the long plan language that we get when we interview and are accepted for a job or employment position, you know, we tend to at least try to push that plan language or summary back into the deepest, darkest drawer. But we do need to understand the finer language of it, understand what our limitations are, what our benefits are, if there any exclusions in our policy, to get some kind of background, should insurance actually deny a claim or service.

Laurie Todd: When I take a new case, the first thing I do is to read about a dozen scientific articles, because I want to know what this treatment is all about. Is there enough scientific evidence to support it? And I want to be sounding like I know what I’m talking about when I talk about it.

Pence: that’s Laurie Todd, author of Fight Your Insurance Company and Win. Todd doesn’t call herself a patient advocate, even though she’s successfully helped hundreds of patients. Instead she calls herself “the insurance warrior,” because that’s the only thing she does — fight denied health insurance claims and treatments.

Todd: This is not something you go out and look for, becoming the insurance warrior. It came and found me. In March 2005, I was diagnosed with late stage appendix cancer, rushed into surgery and given months to live. And because I had an unusual cancer, they sent me to the chief of oncology at the HMO. And he said, “There is no treatment for your disease, and even if there were, they wouldn’t pay for it.” So in that sentence, that’s where and how the insurance warrior was born.

Pence: Obviously Todd survived her cancer. She describes what happened next.

Todd: I knew if he said they weren’t going to pay for it, that there must be a treatment. So I immediately went home and went looking for the life saving treatment, which in my case was cytoreductive surgery and Hyperthermic Intraperitoneal Chemotherapy. And then my insurance company denied it. So I spent two months inventing an appeal. And I thought, “If my life is going to depend on this document, I’m going to create a document the like of which they have never seen.”

Pence: Todd spent weeks reading her state’s insurance regulations and studying both her insurance policy and the company’s website. Only then did she write her appeal.

Todd: Nobody thought that I would win. Finally it was ready and I sent it to the higher ups at the insurance company and three days later, they called me, which had never happened before. And they said, “Well, we’re going to pay.”

Pence: Todd got the life-saving treatment she needed and has since used her experience to help hundreds of other patients whose insurance claims and treatments have been denied. Her first piece of advice? Don’t wait too long to attempt an appeal with your insurance company.

Todd: First denial, that’s when we start springing into action. That’s the very best time to do it. Now, that said, now a days, I mostly get people who have had at least one denial already because they think it’s going to work. You know what I mean? They think that this insurance appeal, usually they think their doctor can fix it. That’s usually what they do. When they get a denial, they’ll often say, “Oh, my expert doctor, you know, he’s going to take on the insurance company and do a peer to peer review and they’ll get it turned around,” and that usually doesn’t work anymore. So I’ll usually hear from them after the doctor has lost the appeal and that’s fine, as long as they got some due process left.

Pence: Todd and Bietry disagree on some points about how and when to go about an appeal, but they both agree that it’s crucial to keep calm and to take all emotion out of the picture. Easier said than done.

Bietry: It all goes back to kind of neutralizing the situation and you know, there’s always a task at hand. So, we’ll need to assess where we are in the process regardless of the patient’s demeanor or behavior and it’s very understandable, perhaps. Just really get to kind of the crux of the issue and find out where we are in the process of obtaining access or approval for a given service. And just working with the insurance to handle it professionally and letting them know that now the patient has an advocate on hand and we can be the voice for the patient with regard to the process. That generally helps to kind of neutralize or somewhat stabilize the situation.

Todd: I think I want the world to know that you could probably do one tenth of what I do and still win an appeal. If you just send it to a few of the right people, you keep all emotion out of your appeal and you prove your case with facts – people do win these, it can be done.

Pence: And sometimes when emotions run high, a patient advocate can do a bit of damage control. In one case, Bietry appeared in court on behalf of a young leukemia patient who was seeking unapproved off-label use of a drug in a last ditch life-saving effort.

Bietry: It was a really tense time- the patient was understandably in distress. We did achieve a positive outcome for the patient, but even then, we had to do some work to enforce the ruling that the judge handed over and force Medicare to make that coverage, that approval immediate and effective so that the specialty pharmacy could administer the drug. So it was a very tense time and it involved the cooperation and compassion of a number of individuals on the advocacy side, on the provide side, on the insurer side. And we finally secured access for the drug for the patient. It was a win-win.

Pence: Many of us can probably think back on a medical emergency when our emotions got the better of us, and we said or did things that only worsened the situation. So it’s easy to see how having an advocate speaking on your behalf could be yet another useful tool toward healing and recovery.

You can learn more about all of our guests, as well as Todd’s book Fight Your Insurance Company and Win by visiting our web site at radiohealthjournal.net.

Our writer/producer this week is Polly Hansen. I’m Reed Pence.

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