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How Can CLL Patients Access Help and Avoid Financial Barriers?

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Published on April 28, 2021

Financial Advice and Resources for Patients with CLL

New treatments and drug combinations are being approved for chronic lymphocytic leukemia (CLL) patients each year, but what resources are available to a CLL patient when an insurance company won't cover the expense? Dan Sherman, Founder and President of the NaVectis Group, joins CLL patient and Patient Power co-founder, Andrew Schorr, to discuss the many financial resources available to patients. Watch now to learn about appealing a "no" from an insurance company, the financial guidance that may be available at your medical center and the many foundations and pharmaceutical companies that can help.

Support for this series has been provided by Janssen Oncology and Pharmacyclics LLC. Patient Power maintains complete editorial control and is solely responsible for program content.

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Transcript | How Can CLL Patients Access Help and Avoid Financial Barriers?

Andrew Schorr: Hello, and welcome to Patient Power. I'm Andrew Schorr. We are discussing financial issues for today's medicines in chronic lymphocytic leukemia, and I have CLL — believe me, I'm vitally interested. And back again, is a wonderful man who's been devoted for a quarter of a century in helping patients with serious illnesses, that's Dan Sherman who joins us from Grand Rapids, Michigan. Dan is the founder of The NaVectis Group, which is facilitating financial counseling for patients. Dan, welcome back to Patient Power.

Dan Sherman: Thank you, Andrew. Thank you for having me come back again, it's always a pleasure to speak to you about these matters.

What Are the Most Common Financial Barriers for CLL Patients?

Andrew Schorr: Thank you. So Dan, cancer medicines are often breakthrough medicines now, increasingly, and we're very appreciative, but they're expensive. Often, they're oral medicines, and so our doctor prescribes it and sometimes it's a fight. With the insurance company or whoever it is, for us to get the treatment that our doctors are recommending is right for us. Tell us about your role, and your peers around the country, and how you can help.

Dan Sherman: Yeah. About 30% of the oncology pipeline is now moving into the oral treatments, and as you've already mentioned, some of those oral medications can be extremely expensive. So, depending on what kind of a health insurance system you're in, it may or may not develop into a problem for the patient.

Generally speaking, individuals who have commercial insurance, insurance through their employer, or if they're in the Affordable Care Act and have insurance through that system, usually there's not that much difficulty in getting the drug. Now, if it's not on the formulary or if it's not FDA approved, we're going to be running into problems. But generally speaking, from a financial standpoint and access to care standpoint, we run into problems when we have Medicare beneficiaries who are enrolled in Medicare Part D and do not qualify for low-income subsidy. And so, the out-of-pocket responsibilities that you have in that system could be very significant.

Andrew Schorr: Now, is an insurance company or government denying us the ability to get a certain medicine simply based on cost, or sometimes is it a question whether it's approved for what we have? What would be the reasons?

What Are the Reasons that a Medication May Not Be Covered by Insurance?

Dan Sherman: Right. Well in the Medicare Part D system, it’s still commercial insurance, technically. It's a private insurance company, it's not the government. It's a private insurance company. But, yes, there's going to be a couple of things that you could potentially run into. One of them is, if it's not FDA approved, the likelihood of that insurance company covering that product is fairly low. 

Now, you can go through an appeals process to make that happen, but it's fairly low. A more common thing, though, if your physician is prescribing a certain medication that is indicated for your disease, that it might not be on their formulary. That's where there are many more opportunities to get that specific drug covered if you go through the process of requesting a formulary exception or going through an appeals process, re-determination process. There're four or five different steps that Medicare Part D has in place to protect patients, to be able to get access to medications that they should be able to get access to.

Andrew Schorr: Right. Of course, here in the US, Medicare Part D may come into play because many CLL patients are seniors, and so they might well be in some program tied in with Medicare, like Medicare Part D, which is facilitated by a commercial entity.

Dan Sherman: Right.

Andrew Schorr: Okay, so let's talk about that for a second. If, let's say, your doctor feels that a certain medicine is right for you and it's not on the formulary, the short list of medicines the insurance company usually pays for right out of the box, can your doctor help? Do they write a letter? What happens?

Dan Sherman: Yeah. In my opinion, it really should start at the physician's office. The provider should be reaching out to the Medicare Part D insurance company and then requesting, first of all, a prior authorization for it. If that prior authorization is denied, request a re-determination of that prior authorization. If it's a formulary issue, then there is a process in place to request a formulary exception, and that they will then agree to add that drug to their formulary.

There’s multiple processes, but I recommend that you, for the most part, have the provider or the support staff within that provider office go after that appeal and that formulary exception.

Andrew Schorr: Okay. Now let's talk about your role. You're a financial navigator and you consult with others and train them around the US, so there might be at the medical center you go to, a financial navigator who can help as well. Right?

What Is the Role of a Financial Navigator?

Dan Sherman: Right. Absolutely. In some settings, the financial navigator will be the one that might reach out to the insurance company to request this appeal or the formulary exception. My tendency and my hunch is, is that when you request that formulary exception or a prior authorization or an appeal of a prior authorization, you want to be heavy on making sure that you're making the medical argument for the drug. Often, I will pull in the nurse navigator or the physician assistant or even the physician itself, the oncologist itself, and maybe do a peer-to-peer with the insurance company. Because we want to articulate the medical reason why that product is necessary for that specific person.

Andrew Schorr: Let's say something is available to us but it's expensive, we might have a big co-pay. What kind of assistance is available, and how can you, as a financial navigator, help us figure that out and even know that there are ways of getting assistance?

What Financial Resources Are Available to Patients?

Dan Sherman: Right. Yeah, there's assistance available on multiple different levels. Let's just take a first one. Let's pretend that the insurance company says no, we're not going to cover it for you. If I've gone through the entire appeals process and I'm at a dead end, I certainly would reach out to the pharmaceutical company who makes the product and request that they provide the product for free to the patient. That is successful, I'm taking this out of my head right now, but probably 80% of the time I'm able to get that product for free from the manufacturer.

Now, if the next barrier, if they do approve it but you have a very large co-pay, which happens very often in the Medicare Part D system, now it's, "Well, is there a foundation available out there?" There’re independent foundations: Patient Access Network, Patient Advocate Foundation, HealthWell Foundation, Leukemia/Lymphoma Society. Multiple different organizations out there that assist with large co-pays for products for CLL and for individuals who are diagnosed with CLL.

Right now, I checked just before our conversation, and there's three foundations open right now. Patient Access Network, HealthWell, and LLS will help CLL patients with their out-of-pocket costs for those drugs. If those programs are not available, because they open and close on a fairly regular basis, then I would also be looking for government safety net programs in the Medicare Part D system, that would be the low-income subsidy. If you go to the social security website, you look for extra help for your prescriptions. If you meet the financial criteria for that, that fixes the out-of-pocket responsibility for these very expensive drugs. That's in the Medicare part D system.

Andrew Schorr: What about now commercial, if you're on commercial insurance? Let's say you're employed, and you have insurance through your employer. Usually, the co-pays are less, but you still may need assistance.

Dan Sherman: Yeah. Yeah, so yes and no. Sometimes if you have commercial insurance you might just have a flat $50 co-pay for one of those high dollar drugs. In other circumstances — let's pick on the Affordable Care Act. If you have a $5,000 deductible in the Affordable Care System, then you would pay the entire $5,000 for that drug, and so that's where the pharmaceutical co-pay assistance programs come into play.

For example, if you were on a certain oral medication that's a high dollar drug, then the manufacturer of that product would help you with your co-pays for that product up until you've reached your deductible and your out-of-pocket responsibility. Then you have 100% coverage for your care for the rest of the year and there should be zero co-pays after that.

Andrew Schorr: Okay. Now, how do I find someone like you? What do I say to my doctor or nurse to say is there a Dan Sherman who can help me navigate it because I'm not feeling well, or I have leukemia and I'm worried and I can't process all this?

What Do Patients Need to Do to Access Help?

Dan Sherman: Right. Well, you should certainly ask. If you're in an oncology program, the first question should be, “Do you have a financial navigator that can help me navigate this or a financial advocate?” If the answer is no, then I would go, "Well, do you have a social worker that assists with these types of things?" Many times, if they don't have a dedicated financial navigator, it's the social worker that starts looking for these types of programs and assisting patients. If you're in a system where none of those are the case, then I would highly encourage that letters and lots of emphasis is being made of, “Why don't you have these resources available to your patients?” The more patients speak up about this, I tell you, administrators listen to what patients are saying in regard to services.

Andrew Schorr: All right, one last question, Dan. So, there are many of us who are diagnosed with CLL who have taken care of ourselves our whole life and we're not used to asking for help. Yes, we understand the doctor is prescribing the medicine for us, but as far as navigating the system or appealing, we're not used to doing that, and we're a little embarrassed about doing it. What would you say to patients and families who are hesitant?

What Advice Do You Have for Those Who Are Going Through This Process?

Dan Sherman: Well, we have many experts among us, right? Now, let me give myself as an example. I know very little about computers and software. I have a brother who is an IT guru, right? So, when I have a computer problem, I reach out to him and say, "Hey, I need assistance with this.” I don't have the expectation that I'm an expert in this field. Or for example, if I have a cancer diagnosis, I'm not going to go to my mechanic to request assistance, or I'm not going to try to figure this out on my own. I'm going to go to my medical oncologist to get expert advice.

Andrew Schorr: You're not going to watch a YouTube video.

Dan Sherman: I'm not. We really need to start understanding here that financial toxicity, even though embarrassing, is a true issue, and something that really needs to be treated. It's something that we in the healthcare setting need to understand and take more seriously, that this is a problem that we have to be addressing. I hope that the people listening to this would say, "I do need help, I'm not an expert in this."

By the way, let me point out one more thing. I have a full-time job doing this and I have a whole bunch of colleagues who have a full-time job doing this. That means that there's more than just you who is having a problem. This is a systemic problem that we're dealing with. A lot of people need the help. I don't know if that helps take off some of the burden, but I would hope that it would.

Andrew Schorr: Well, it helps me a lot, and I think for our viewers to know there's Dan and there are your peers around the US, at least, who are really devoted to this and helping. I don't think any of us should be ashamed about asking for help, and really getting, what I like to say is, the treatment that we and our doctor believe we need and deserve, and that it should be one where it's affordable and accessible for us.

Dan Sherman, thank you so much for being with us on Patient Power once again. Hopefully, everybody will take this to heart because what I come away with is there is help, you just need to look for it, and ask for it, and not be ashamed to go after it.

Dan Sherman: Thank you, Andrew, I agree.

Andrew Schorr: Thank you so much. Andrew Schorr with my friend, Dan Sherman, devoted to you, reminding you that knowledge can be the best medicine of all.

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