Access to Better Care: Overcoming Financial and Insurance Barriers - 3 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


Access to Better Care: Overcoming Financial and Insurance Barriers

Andrew Schorr:           

So complicated. Let’s just back up a little bit.

…in the U.S. or…so, commercial insurance like Blue Cross or other policies—right, Stacey? And then you need to check to see if something’s changing each year that would affect you living with a chronic illness like CLL, and if you were switching from infused therapy, which might be paid with the hospital or directly, and you’re going on an oral therapy, how does that affect you financially? Based on your financial situation, if you’re now gonna be on Imbruvica, venetoclax or something else that comes along, is there an assistance program—either co-pay assistance from the drug company or some other foundation? Did I get it right, Stacey?

Stacey Worthy:

Yeah, absolutely. You definitely wanna look into all of those things. Sometimes, it’s really hard to make sense of the health plan. The language can be really tricky, so I would absolutely recommend calling the insurer to have them clarify if you can’t find the information that you’re looking for.

Andrew Schorr:           

Yeah, and tell them specifically what you’re on.

Eliot Finkelstein:         

Let me jump in. I’ve called my ombudsman many times, and she knows me personally by name because I keep calling her to ask her questions about the details of the plan, what’s covered, and everything else. So, that’s important, and you’re absolutely right about going from infused therapy to pills. It changes everything, and it changes—the infused therapy typically is covered under regular medical coverage. These pills are covered under a prescription plan, which is way different.

Andrew Schorr:           

Right. So, let’s explain that. So, if you’re getting rituximab, or inotuzumab, or ofatumumab, or maybe some other “mab” that’ll come along, typically, that’s administered at the clinic or the hospital, and that’s covered under—is it Medicare Part A?

Stacey Worthy:

Part B.

Andrew Schorr:           

Part B, sorry—the nursing costs, the doctor costs related to that. But, if you then go on one of these oral therapies, that would either be—if you’re on Medicare—Medicare Part D, or are you covered through a commercial plan, like we described?

Stacey Worthy:

Yeah.

Andrew Schorr:           

So, here’s something I heard about the other day, and I have to check into it myself, and you might check into it with a broker. So, Eliot is covered under his wife’s plan through retirement, and then he has the military veteran one kicking in, too.

My wife also has a family plan. Esther has a few years to go before she gets to Medicare. And, what I’m gonna look into—and, I heard about this from another patient—could I get my drug benefit as a member of that family plan? Would it be cheaper than me being covered under Medicare Part D? So, it adds cost to the family plan, but it’s less than what the gap is under Medicare Part D.

So, I’m gonna call our insurance broker today—I just heard about this the other day.

So, this navigation that we have to do in trying to get the medicine that we want—now, Eliot, I’m gonna skip back to your doctor. Your doctor was also making calls for you to help in your journey with CLL, right?

Eliot Finkelstein:         

Correct. He was calling the insurance company, I presume directly. Also, my skin doctor was calling the insurance company directly, and so, relatively speaking, on the drug part and the infusions, I really didn’t have any trouble.

I will say—and, this may be too rare for most people, but I’m getting IVIG permanently for the rest of my life—infusions. And, one doctor—one of my cancer doctors—submitted my request for IVIG under my cancer. Well, it didn’t work; they denied it, because it’s different requirements under cancer or CLL than it is for my skin disorder. And so, it was accepted under my skin disorder, but not under my cancer, so I almost had to yell at them to explain, and I had to tell them four times and several doctors’ offices to make sure it’s submitted under my skin disorder.

Stacey Worthy:

That’s a really good point. I would like to piggyback on that.

A lot of times, when you’re denied access to a treatment, it could be as simple as the practitioner just using the wrong billing or coding information when submitting the claim. So, even before you do any appeals process, it’s always helpful to talk to your doctor and make sure that they are using that correct billing and coding information.

Andrew Schorr:           

All right. Let’s talk about IVIG—immunoglobulin—which some of us in CLL need long-term to boost our immune system because our immune system isn’t as strong as it should be. For me, I travel a lot for work, and sometimes for fun, and my doctor here in San Diego, Tom Kipps, routinely has many of his patients out. I said, “When can I stop IVIG?” Tom says, “When you stop traveling.” So, you’re saying—and, please, wipe down things when you fly on the plane…

Eliot Finkelstein:         

…and in your hotel room.

Andrew Schorr:           

Yeah, and in your hotel room, right. And so, when I get IVIG now, I get it at the clinic as an infusion, and I think the cost is probably $10,000. It’s a lot. Fortunately, right now, Medicare and my Medicare supplement are getting it. Some of you—I was talking to Dr. Rick Furman, who’s a CLL specialist in New York, maybe you’re his patient—some people have been saying, “Well, I get IVIG at home,” which can be administered.

I asked my doctor’s clinic about it, and they had a company call me, and apparently, under Medicare, CLL—and, maybe I’m wrong, I’m checking into this, navigating this—it’s not one of the conditions where they typically authorize IVIG at home even though it’s cheaper for them. Go figure, right?

Eliot Finkelstein:         

Yeah, really.

Andrew Schorr:           

So, you have to be an advocate. Like Eliot, you probably have to make a lot of calls. Stacey, this is so unnerving for us who are dealing with cancer.

Stacey Worthy:

Absolutely.

Eliot Finkelstein:         

Can I add?

Andrew Schorr:           

Yeah, go ahead. We’re gonna have to fight Medicare, call our congressman, make sure our doctor has the right code…

Eliot Finkelstein:         

…let me add a couple things. One is we don’t pay a bill now until we see both the doctor bill as well as the explanation of benefits, and then we make sure everything is correct on it. That’s one. The other one is that—I just lost my train of thought. We cover ourselves, and we make sure everything matches up in what it should be.

Andrew Schorr:           

So then, it brings us to the question—Stacey, you’re a healthcare attorney. When do people need to get an attorney involved? You talked about the appeal process, which can have a couple levels, or Eliot calls an ombudsman, which is great if somebody at his insurance company can go to that.

Social media you mentioned, and our daughter Ruthie actually used that with Blue Shield of California. She rattled cages on social media. Suddenly, somebody higher up saw it and got involved. I did some peer-to-peer review that got something covered that they were saying they wouldn’t. But, when do we need to look for an attorney to write a lawyer letter or do something more?

Stacey Worthy:

I would say if you wanna file a lawsuit, that’s a last-case scenario. If you need help with the entire process, you don’t necessarily need an attorney. You may be able to find a patient navigator. I know other groups—American Cancer Society offers assistance with patient navigators, who can walk you through the whole process and help you with the appeals process, and oftentimes, they provide those benefits for free. So, you don’t necessarily need an attorney unless you want to file a lawsuit.

Andrew Schorr:           

What about just a so-called “lawyer letter” on your stationery?

Stacey Worthy:

You can definitely send a strong message with that.

Eliot Finkelstein:         

Well, the other part is—I’m a member of Legal Shield. I imagine I could go ask Legal Shield and say, “Hey, could you write a letter on my behalf?” It’s a local attorney.

Stacey Worthy:

Yeah.

Andrew Schorr:           

It’s kind of a pain, because here, you or your spouse, your loved one, is dealing with this, and it takes a lot of energy. I will tell you that just the other day, we recorded a program that’ll be posted in about a week, and it’s with the Chief Medical Officer for The Leukemia & Lymphoma Society and the Vice President for Education for another organization, Cancer Support Group. Some of you may remember it as the Wellness Community or even Gilda’s Club in some cities.

And so, you can call them, and they will often have resources to help you, as you were just saying, Stacey, with the American Cancer Society. You don’t have to go it alone and you don’t necessarily have to call an attorney. You can be guided on some of these processes.

But, you can start by calling your insurance company—or, for me, with this issue about Medicare, is there a workaround I could have with my wife’s insurance? We did not have an insurance broker, but I arranged one just the other day. She was very knowledgeable. I’m gonna see if she can go to bat for us and help us figure out a better way to do this, where one person is on Medicare, one person isn’t, has a family plan. Can I get a greater benefit that way?

And then, There’s the whole public advocacy part of it, and that’s why we call it the ABCs of Patient Empowerment, because you know these debates are gonna be going on in Congress, and then you have Medicare changing its policies independent of Congress unless Congress weighs in. How does it work? You’re back there in Washington, Stacey. How much can Medicare do on its own, and how much can Congress change it?

Stacey Worthy:

So, there’s a law in place, and it gives CMS, the Centers for Medicare and Medicaid Services, authority to issue rules interpreting that law. Medicare is allowed to change the program as long as they’re interpreting the laws in place to allow them to do so. If the law is pretty—unambiguous on its face, at that point, Congress would be in charge of making the change.

Andrew Schorr:           

Okay. And, what about—so, Eliot has insurance in California, my wife does too. Is that regulated by the state? How much of it is regulated federally?

Stacey Worthy:

Private health insurance? It depends on—typically, private health insurance is run through the state, and then, if you have an employer-sponsored plan, then it’s a little trickier, because I think the Department of Labor has some jurisdiction over those types of plans, so that’s federal. But, if it’s through the insurance marketplace exchange, then that’s through the state. However, in some states, even the exchanges are run federally, so it really depends on the state and the type of plan.

Eliot Finkelstein:         

Confusing.

Stacey Worthy:

Very confusing.

Andrew Schorr:           

Okay, now, let me ask about this. So, if you work for a corporation—you talked about an ombudsman.

If you’re having these issues, do you go to HR? Is that who goes to bat for you? Hopefully, you work for a large corporation, and they have some clout.

Stacey Worthy:

Yeah, absolutely. You can definitely talk to your HR professional, get some clarification on your healthcare policy. I don’t know that they would go and file the appeal for you. I think your best bet is to go and work with your doctor directly, because oftentimes, when you’re appealing a decision, they’re gonna want proof of medical necessity. And only your doctor can provide that, but I think it’s definitely worth talking to HR professionals as well.

Andrew Schorr:           

Okay. So, now, if you have questions folks, I want you to send them in to – you can do it either way—cll@patientpower.info or questions@patientpower.info, and send us questions, but not too specific. Eliot, what advice do you have to people? You’ve had this journey, you’ve had to double-check with a magnifying glass your doctor bills, your hospital bills, and you have a couple different insurance policies now.

Eliot Finkelstein:         

My biggest thing is you need to stand up, you need to speak up in a very nice way. Also, whenever you’re prescribed a drug, call the drug company, go online to the drug company, see if you can get it cheaper. I’m doing eyedrops because I’ve got dry eyes, and I went online to the company, and they have a discount that you can print out, and I didn’t have to contact anybody. So, it went from my maximum of $30 a month, down to $5 to $10 a month. So, you can call the drug company. You can take care of whoever it is and see what they’ve got, and you can ask. Don’t be shy about calling. The other thing is to speak up when you get a bill.

Some of my bills, because I’m out of state—mine is Blue Cross/Blue Shield of California—how crazy it is is the lab sent a bill to Blue Cross of Nevada, and it was supposed to be sent to Blue Cross of Arizona, where I live, but if it’s sent to Blue Cross of California, it’s considered out of network. And so, it’s a billing error, but we keep getting those, because someone in the billing department of whatever company sent it to the wrong place.

So, you have to keep eyes out for that, and you have to be really strong in talking to the people, and if you don’t get the answer you want on the phone, you say, “Let me speak to someone who can give me that answer,” and you keep pushing it up the ladder. They’ll try and tell you, “Well, the supervisor is not here.” “Well, you’re not the head of the company. Give me someone else. Give me their supervisor.” Keep pushing and take names, dates of when you talked to them, and the gist of the conversation, and just write it down. Those are the biggest things. And, you’re allowed to tell a doctor no.

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Page last updated on June 21, 2019