Access to Better Care: Overcoming Financial and Insurance Barriers - 2 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


Access to Better Care: Overcoming Financial and Insurance Barriers

Stacey Worthy:

If you’re in a tricky situation, especially when you’re in the donut hole, and there is an impeding donut hole Part D cliff coming up, so that catastrophic threshold could potentially rise to $6,300— little bit over that. Yeah, it’s pretty bad. Basically, we’re trying to call on Congress to place a cap on that threshold so it doesn’t rise that high because it’s just gonna get harder for Medicare beneficiaries, and it’s not fair.

But, in the meantime, it is very hard. It’s possible you could look in to private plans. There are some patient assistance programs that might be able to help, whereas you can’t get assistance from a drug manufacturer with co-pay cards, which somebody could use if they’re on a private plan. Some of these nonprofit patient assistance programs like the Patient Advocate Foundation are permitted to help people, even if they are Medicare beneficiaries.

Andrew Schorr:           

Oh, really? Let’s go over that again. Hold it. So, Patient Advocate Foundation, and there’s another one, NeedyMeds, Good Days—there are a few of them, and we’ll make sure they’re listed on our website, but there are thresholds. Now, what if somebody is retired? They’re not impoverished—I don’t wanna say “impoverished”—they still have a decent lifestyle, but all of their income is passive. In other words, maybe they take some money from their savings to support themselves, but they have a decent amount of savings. My understanding is they can apply for these programs because they don’t have a regular income. Is that right?

Stacey Worthy:

I’m not entirely sure. So, you’re saying somebody who’s retired but does not have insurance?

Andrew Schorr:           

Well, they have insurance, but they’re not—so, they don’t have a job. I have a job, so I get a regular paycheck, if you will, from Patient Power.

But, let’s say they don’t have that, but they’re not—they can pay their rent, or they maybe own a home. Do they have to give up all that before they can qualify for one of these assistance programs for somebody on Medicare?

Stacey Worthy:

No, I don’t think so. I guess it depends on the situation. It also depends on the patient assistance program. Usually, it is for somebody who has some financial difficulties, so if you’re able to pay and you can afford your medication, you probably are not going to be able to qualify, but if you are in financial hardship, then you may be more likely to qualify for one of these nonprofit patient assistance programs.

Andrew Schorr:           

Okay. Well, we’re gonna talk more about that because it’s kind of the middle class, because now, the cost of these medicines is so high that you’re middle class, and you’ve never asked for any assistance before. It’s uncomfortable to do that—getting a second mortgage on your house, reverse mortgage, whatever you wanna talk about – it just doesn’t seem right.

But, let’s go back to this cliff here you were talking about, Stacey.

So, what’s pending related to Medicare rules? When would this kick in? Maybe we need to go the “Mad About That.”

Stacey Worthy:

Yeah. So, under the Affordable Care Act, there was a provision that had sort of caps—or, not really caps, but they had limits on what you would be paying, the threshold, that catastrophic phase of the Part D plan. Typically, the way it works is you’re in the deductible phase, you pay 100 percent of the medication until you meet the deductible. Then, you go on to the initial coverage, where you’re paying 25 percent co-insurance until you get into that donut hole. And then, in 2019, I think you get into the donut hole when you reach about $3,800.

Then, you’re in the donut hole where you have really high co-insurance until you meet that threshold for catastrophic coverage which, in 2019, is gonna be about $5,100. In 2020, that’s when the ACA provision is scheduled to sunset, so that catastrophic coverage threshold rises to $6,300, which is a big chunk of change. So, that’s why we want to encourage people to write to Congress and ask them to fix this by enacting a path on out-of-pocket costs for Part D plans.

Andrew Schorr:           

All right, let’s see—I understand. So, just for the Medicare folks – and, let’s face it, a lot of people—Eliot, you’re younger. How old are you?

Eliot Finkelstein:         

I’m 60.

Andrew Schorr:           

Okay. So, you’ve got another five years before—maybe they’ll change that. Who knows?

Eliot Finkelstein:         

Hopefully.

Andrew Schorr:           

Yeah. But, right now, I’m 68, so for my friends who are 65 or older and on Medicare, we then are paying—reach the catastrophic level pretty quick. In 2018, was it $3,800.00?

Stacey Worthy:

That’s the initial coverage period.

Andrew Schorr:           

Okay. But, you’re saying in 2019, it’s gonna be yet higher?

Stacey Worthy:

Yeah, so, for the catastrophic coverage, it’s $5,100.00.

Andrew Schorr:           

And then, the plan is for 2020, over $6,000.00?

Stacey Worthy:

Yes.

Andrew Schorr:           

Whoa. So, we pay that?

Stacey Worthy:

Mm-hmm.

Andrew Schorr:           

And then, I think, it drops to – we have a co-pay of five percent, right?

Stacey Worthy:

Yes, exactly.

Andrew Schorr:           

Then, I have a question—5 percent of what?

So, there’s been a question whether we—the Medicare consumer—I just wanna stick with Medicare for a second—we, the Medicare consumer, are paying basically five percent of the retail cost, if you will, even though whoever was providing us the medicine may be getting rebates and pocketing the money. Am I right?

Stacey Worthy:

Yeah.

Andrew Schorr:           

What do we do about that?

Stacey Worthy:

That requires additional reform. So, we need reform of the PBM system, and making sure that PBMs are not pocketing those rebates that they’re passing…

Andrew Schorr:           

…quite frankly, there was an affair in the Rose Garden at the White House, and however you feel about Trump or Republican or Democrat, that was the discussion. Are there these middlemen pocketing money and us poor cancer patients or other people with expensive medicines getting hammered with higher co-pays when those guys are making money in the middle?

Stacey Worthy:

Exactly. So, basically, what’s happening is they’re reclassifying rebates that should be passed on to the insurers, and then ultimately to patients—plan enrollees—as administrative fees, and then they get to keep that money instead of passing that savings on.

Andrew Schorr:           

All right, Stacey. So, while we’re talking about this, we can be converted to not just self advocates, but patient advocates. What can we do? Write our new congressman or our old congressman? What do we do?

Stacey Worthy:

Yeah, so, you wanna talk to both your state legislators and federal legislators—policymakers—and encourage them to enact PBM reform that doesn’t permit them to pocket those rebates, that forces them to pass them on to the consumers.

Andrew Schorr:           

Okay. So, that’s that one about pocketing the money—the rebates they get—rather than passing on the savings to us.

Stacey Worthy:

Yeah.

Andrew Schorr:           

You’re used to that. You go to Costco, you know they negotiate lower prices so that you can buy it cheaper, but here, we’re stuck with the higher co-pay. Okay, but what about these cliffs you’re talking about at the catastrophic level? That’s nationally, federally, with [inaudible] for Medicare and Medicaid. What do we do about that one?

Stacey Worthy:

So, that one is you’re gonna wanna talk to Congress and try to get them to put a cap on what you’re gonna pay out of pocket, and it’s much lower than that cliff amount. So, most health plan—or, many of the health plans do have out-of-pocket caps. At least with the ACA plans, the cap is $7,000 for individuals and $14,000 for families, which is also very high, but at least there is a cap on what you would be paying. So, when you take into consideration you’re paying 25 percent of a drug at one point and five percent of a drug at another point, it could get really expensive, as you mentioned.

But, if there’s a cap on what you pay out of pocket, then once you reach that amount, you won’t be paying any more.

Andrew Schorr:           

Okay. Now, Eliot, you’re on what we call a commercial plan—Blue Cross, Blue Shield, one of those.

Eliot Finkelstein:         

Blue Cross/Blue Shield of California through Los Angeles Unified.

Andrew Schorr:           

So, you’re still in a group plan from the Los Angeles Unified School System. Were you a teacher or your wife was a teacher?

Eliot Finkelstein:         

My wife was an office worker at an elementary school, so I’m living off of her insurance.

Andrew Schorr:           

Okay. So, let’s talk about that, Stacey. Are there things that any of us can do that may be better—first of all, Medicare, where we wanna be—maybe we have a spouse with a better plan, and we wanna do that. And then, we could have this appeals process that we go through, like Eliot described.

Stacey Worthy: Yeah, absolutely. I would highly recommend that when you’re looking into health insurance, you be a—you do comparative shopping. So, look to see what other plans are out there and whether they offer better coverage. If there’s a private plan, just because you’re a certain age doesn’t mean you can’t enter into it. You can look to see what plans are available even through the insurance marketplaces—so, those individual plans. That’s also another option.

The one thing I would say you wanna steer away from is those short-term plans—these are the plans that used to be for 30 to 90 days, or when there’s a coverage gap when you’ve lost health insurance, but now they last up to 364 days. I wouldn’t recommend looking into those plans because they’re allowed to discriminate based on pre-existing conditions, so if you have cancer, they can disqualify you. They don’t have to offer [inaudible], things like that. But otherwise, I would absolutely recommend looking into private plans as well.

Eliot Finkelstein:         

Can I jump in?

Andrew Schorr:           

Yes, please.

Eliot Finkelstein:         

Every year, of course, even we—under the commercial or private plan—we have open enrollment. So, we’re always checking, but unfortunately, because ours is from Los Angeles or California and we’re out of state, we have to stick with the one plan, and we have to accept what they change. But, we’re always checking each year to see what we could do to improve what we’ve got.

Andrew Schorr:           

Now, something just happened with Blue Shield of California, which my wife has, and I don’t know how universal this is. They’re not gonna pay for basically non-emergent or non-emergent follow-up care out of state. So, our daughter Ruthie is in Florida, so if she’s on my wife’s Blue Shield plan, they’re not gonna pay for that unless it’s emergency.

So, she’s gonna go through the health exchange on healthcare.gov, and she’s gonna find a plan for her, and she’ll be covered on that in Florida. But, that was a real surprise, because it used to feel like if something came up and you were in another state but covered from California or whatever it was, it would be covered, and now they’re saying no if it’s not an emergency or a follow-up to an emergency. So, Stacey, these policies change. These plans change. Eliot, you were talking about checking every year. Right now, as we do this on December 5th, we’re still in this period where we can make changes—open enrollment, right? But, just for a few days.

Eliot Finkelstein:         

And, for me, because my wife is officially retired, then nothing’s really gonna change unless LAUSD decides to change something, and then we find out about it.

For the most part, I guess we’re grandfathered in and stuck, but it’s a relatively good plan.

Andrew Schorr:           

Okay. Now, you also have some insurance through the military because you’re a veteran, TRICARE. Has that helped you?

Eliot Finkelstein:         

Well, I just got on TRICARE in August. So, because I met my deductible in May, I don’t have to worry about it until January, and my deductible out-of-pocket for the year is $7,500. So, I’m making sure everybody has my TRICARE, and mine is TRICARE Select because I’m not near a military base. When I turn 65, it’ll be TRICARE For Life. And, the way I understand, it’ll pick up all my deductible of the $7,500 minus $150.

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Page last updated on June 21, 2019