Access to Better Care: Overcoming Financial and Insurance Barriers - 4 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


Access to Better Care: Overcoming Financial and Insurance Barriers

Andrew Schorr:           

Well, first of all, I think that is a—Stacey, I think we’ve talked about this on other programs—when I needed CLL re-treatment, it was a discussion that Dr. Kipps and I had about what would be effective therapy at the time, and would it be oral therapy, where I was already taking expensive oral drugs for another condition, or would it be infused therapy? At that time, last year, we agreed on infused therapy, because we were concerned about additional co-pay costs for an additional Tier 5 oral medicine. So far, so good. My CLL is in check. So, I think in this age of oral therapy, infused therapy, what drug when, unfortunately, there may be a financial question based on the vagaries of insurance.

Is it covered by in-hospital and in-clinic care, where it’s covered more completely than oral care? Have that discussion, because often, your doctor is gonna say—some doctors will be knowledgeable; some may not be. Hopefully, there’s a financial navigator at the clinic or in the hospital group, or you can turn to The Leukemia Society or the Cancer Society—one of these groups—to help navigate this, because these are not trivial decisions with expensive medicine.

Obviously, you want the right care, but could you go left or right? In the words of your doctor, would they be equivalent at this time? But obviously, you need to make calls.

Stacey, let’s go through the process because some of our folks have been asking—the appeal process. So, you are denied coverage, or it’s gonna be really high co-pay, or whatever.

…scan or maybe some…take us through the process. Just walk us through.

Stacey Worthy:

Sorry, you froze. Could you repeat the last thing that you said?

Andrew Schorr:           

Could you take us…

Eliot Finkelstein:         

…take us through the appeal process.

Stacey Worthy:

Oh, okay. So, you’re gonna get a—if you’re denied care, you’re going to get a letter in the mail that explains that your care was denied. At that point, you’re gonna wanna read it, review it, figure out what was the reason that they denied the care, let your doctor know, and then you’re gonna call the insurance company. And, as Eliot said, you wanna take a lot of notes here as to who you’re talking to, what they told you, and everything that happens.

Make sure you put the date down, time, everything, the name of the person, and find out what the appeals process looks like, try to get more information about why it was denied, what the next steps are. Then, you’re gonna work with your doctor to file an appeal. So, it might be a formal appeal where the doctor needs to submit some type of form or documentation proving that the treatment was medically necessary or whatever was going on, whatever reason it was denied.

At that point, they’ll likely give you another letter, and they have time limits on when they’re required to respond. The time limits might be different per state, but typically, it’s no longer than 15 days, and in some instances, they’re required to allow you to remain on your treatment while you’re appealing, so it really is state by state. Unfortunately, it differs by state.

Eliot Finkelstein:         

And company by company.

Stacey Worthy:

Exactly. That’s absolutely true. So, at that point, they’re gonna give you another letter. Either it’ll tell you that they granted the appeal, whether fully or partially, or that you were denied. If you were denied again, that’s when they should give you a letter that gives you a list of independent reviewers. So, this is the private entity—or, it’s an entity that’s not affiliated with your insurer, and you can appeal to this independent body at this point, and you can ask them to review.

They’re gonna do another medical review and determine whether the insurer was justified in denying your claim or not. If they deny, then that’s when you’re going to want to go to either your insurance commissioner or attorney general, and they’re gonna be looking at it from more of a consumer protection perspective to see if they did something that was in violation of a consumer protection law or unfair or deceptive, and then hopefully get you coverage that way.

But, as I said—as we both said, you can always try and threaten ahead of time. When you do that very first informal conversation, you can threaten to skip right to that complaint process, and maybe they’ll approve the treatment sooner than later.

Eliot Finkelstein:         

On mine, Andrew, it’s very specific. You have to do the written appeal first, and then if you get denied, my second appeal goes directly to the state board. Some people do other things.

Stacey Worthy:

Yeah, absolutely. That’s a very good point. So, you’re gonna wanna find out what the process is from your insurer, and then make sure you follow that to a T because if you don’t follow the process, they can find any reason to deny you.

Andrew Schorr:           

Okay. And, if you’re a Medicare patient and it seems like they’ve got these big books—is there any appeal process within Medicare?

Stacey Worthy:

I’m not entirely sure about that, so unfortunately, I can’t give you more information there.

Andrew Schorr:           

And then, what about—you mentioned going to the media or even—a lot of us here are on the Internet a lot. What do we do about going to social media? In other words, if we’re having a beef with Blue Cross of whomever or whatever the policy, should we do @bluecross or look it up somehow and just say, “I’m having a big fight, I’m living with a cancer—a leukemia—and they’re giving me a hard time about the coverage that my doctor thinks I need”?

Stacey Worthy:

Yeah, absolutely. I would recommend tagging your insurer, and then tagging all the big patient advocacy groups as well, and Patient Power. Tag everybody, because they can amplify your voice, retweet you, and get you a lot of coverage, so I think it can be a very powerful tool.

Eliot Finkelstein:         

Just don’t curse.

Andrew Schorr:           

Yeah, don’t curse. Be respectful. But, I’ll just say—also, the drug company that makes the medicine that you need wants you to get it, right? And, they may have assistance programs. They often do, even in some cases for non-Medicare patients. I know a woman who needed certain breast cancer drugs and couldn’t get them in any way, and they had free drug programs. So, I want you to call them and name...

Eliot Finkelstein:         

I’m not—my connection is bad.

Andrew Schorr:           

…go ahead.

Eliot Finkelstein:         

Okay. I found out—and, I’m getting my venetoclax through Mayo, and they said, “Oh, we have a special going on from the manufacturer, so you get it at 75 percent off,” and I hadn’t even asked for it—75 percent off my co-pay, so it was really nice.

But, like you said, you definitely wanna ask. Some of the discounts are only for commercial or private insurance. Some don’t help with the Medicare; some don’t help with that, so you’ve gotta keep asking, gotta keep pushing—again, call the manufacturer, get ahold of them, email them, talk to them.

Stacey Worthy:

I would like to add one thing about co-pay assistance. The new latest and greatest thing that insurers are doing—they’re implementing policies called co-pay accumulator programs. I don’t know if you guys have heard about this, but traditionally, when you get co-payment assistance from the drug manufacturer—those coupon cards—their assistance counts toward your deductible, so it’s helping you spend down that deductible throughout the plan year, and it helps you even sooner, and then, once you meet the deductible, either you have a really, really small co-payment or it could be free for the rest of the plan year.

Well, with these co-pay accumulator programs, they’re not allowing you to apply those coupon cards towards your deductible, which means it takes twice as long to meet it, and as a result, sometimes people—when they run out of co-pay assistance, it may come to a shock to them that they still owe for that entire deductible.

Eliot Finkelstein:         

With that, Stacey, I found out from one of the smaller companies—it depends on how the biller bills it to the insurance company. Are they disclosing the co-pay assistance or not? And so, my people said, “We never disclose co-pay assistance,” so my deductible per drug goes down and my overall co-pay—I’m sorry, my co-pay goes down, and my deductible stays where it’s at, and ends up finishing faster.

Stacey Worthy:

I have heard of a couple plans that have tried to curb that as well, so they’ve implemented a provision in their plan basically saying if you don’t disclose that you’re getting assistance from a manufacturer, then they can essentially drop you from coverage.

Eliot Finkelstein:         

Ouch.

Stacey Worthy:

I’m not even sure that’s entirely legal, but they’re trying. They’re really trying to get around this.

Andrew Schorr:           

Well, I listen to this, and I just think here we are, living with a potentially fatal condition, trying to take advantage of progress in medicine, and we’re just getting hammered. That’s a bigger debate, and I think that is the kind of thing that you can tell the media, tell your congressman, things like that because the costs are going up. I heard the other day that the oral medicine I take for this other blood cancer – myelofibrosis—when it came out was $86,000 a year. Now, it’s $156,000 a year. Of course, co-pay goes up with all that. And, we could have another discussion about why do drugs cost what they do, and that’s a big discussion.

But also, though, how do you, the cancer patient, cope? Now, one of the questions we got in is just to tick off some of these organizations that can help with co-pay assistance. So, we talked about co-pay cards and co-pay programs if you’re on commercial insurance, but if you’re Medicare age, then they won’t let you do that, but there are these foundations, and Stacey referred to it earlier.

So, one is the Patient Advocate Foundation, another is NeedyMeds, another is Good Days, and what we’ll do is we’ll get our producers to post links in if they send you a follow-up email after this webinar. We’ll get the links in there so that you can talk to them, and they may have people who can help you. Now, one of the issues has been do these funds run out of money sometimes during the year? That was a concern earlier in the year, and one of the foundations—The Leukemia & Lymphoma Society has assistance as well.

So, you wanna ask them, but hopefully, there are ample funds to help you, and you—no matter what your financial situation is, you should talk to them and say, “Can I qualify? Can I get some assistance?” as well as we go to the mat, if you will, on these policies with Medicare, et cetera on what is our share that we have to pay. Other questions, folks—send it in anytime. cll@patientpower.info.

Eliot Finkelstein:         

Also, you’re talking about how they run out, but a lot of them will get more during the year, so what they told me, actually, at The Leukemia & Lymphoma Society is keep reapplying. Check every day, check once a week, check once a month, because all of a sudden, there might be money there that next day and you can apply for it. So, all of these you can keep applying for. It’s not just because you’re turned down one time for the year. You can keep applying during the year and keep checking back in.

Andrew Schorr:           

Apply with more than one foundation.

Eliot Finkelstein:         

Yes, apply for all of them.

Andrew Schorr:           

It’s just like applying for more than one college. So, Stacey, as you look forward to this, tell us more about the activities at Aimed Alliance and how we can help, because you’re way down in Washington, D.C., which is sort of action central for a lot of these policies.

Stacey Worthy:

We’re an organization that works to protect and enhance the lives of healthcare consumers and practitioners. So, we’re looking to see what laws there are available to protect you as a patient and as a healthcare consumer, both at the state and federal level, and we’re trying to educate people on what those laws are, and so, I would say come to our website, go to www.aimedalliance.org, take a look at our materials.

We have a brochure on open enrollment that tells you exactly what to look for when you’re selecting your health plan, things to consider, whether your health plan’s gonna cover your doctor, whether your health plan’s gonna require a referral, what you’re gonna have to pay for your medication, things like that. And then, we also—where we do identify deficiencies in the law, we do look to make recommendations on how those can be strengthened. We don’t typically do direct lobbying per se, but we do work to educate policymakers, so we would definitely love help amplifying those messages.

Andrew Schorr:           

Okay. So, Patient Power is very conscious of this. You may be aware—if you go to the Patient Power website—and, we’ll send you the link again—we’ve established a Patient Power ambassador program. Eliot, I don’t know if you’ve signed up, but if you haven’t, I hope you will. It’s where you can say, “Here, I am, I live in Bullhead City, Arizona, and I’ve been living with CLL for so long.”

And, what we’re gonna increasingly do is do programs like this so that you are smart – not just about the treatment and side effect management issues or watching weight for CLL—we do all that too, but also where we may educate you on more of these policy issues or obstacle issues, and where you can speak out in your own community or in your own state. Then, we can work with the Aimed Alliance to say, “Here are people in California, here are people in New Jersey who wanna speak up,” and that’ll help you, right, Stacey?

Stacey Worthy:

Yes.

Andrew Schorr:           

If you have grassroots patients who are dealing with these issues and we can go to the media or to legislators, that’s a powerful story.

Stacey Worthy:

Absolutely.

Advertisement
Join Our Community Register for Events Read Our Latest Blog
Advertisement

Page last updated on April 9, 2019