CLL Access to Care: How Patients Can Get Access to the Latest Treatments - 3 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


CLL Access to Care: How Patients Can Get Access to the Latest Treatments

The insurance system is broken, and I don’t know how it’s gonna be fixed—and it’s gonna be fixed at a much higher level than I’m at—but really feeling for these patients and what they have to go through.

Andrew Schorr:

Well, you brought up the word, Hildy, “communication”; Larry, let’s talk about that, you and me as patients. So, first of all, people do need to speak up, right?

Dr. Saltzman:   

Yes.

Andrew Schorr:

And they do need to get clarity on their own situation and their goals; what would you say to people as far as communication? And you’ve been a doctor as well as a patient, as far as…

Dr. Saltzman:   

…well, I think communication—I think the important thing is that unfortunately, as a primary care doctor who had a schedule to keep, I, unfortunately, had what I call the "seven-minute visit". And so, as a doctor and as a patient, I think it's very important for people to go into a visit with some kind of list, whether it's a written list or a notepad on a mobile phone list, to make sure that you get your questions answered.

I also think it’s really important to take another set of ears to a visit. I think that the visits go so fast, and the questions and advice comes so quick, that sometimes the patient themselves are not really in the zone of listening to exactly what’s going on. And so, I think it’s very important to bring—call it an advocate—but another set of eyes and ears along with the visit.

Andrew Schorr:

Right, let me mention a couple of things I’ve learned having been a patient for 22 years, so first of all: you do have to get clarity on your goals—and Kathleen—you-all spoke about that—what are your goals for treatment; what are the treatments that can help get you there; what’s the testing to know what you need or how well is it working? And certainly, the issues—as Kathleen talked about—will it be paid for and what choices do you need to make on the financial issues?

And then, I think you need to level on what are your resources, either within the family—hopefully, you don't need a GoFundMe campaign—and then, what are external resources? And you could say to whether it’s your community physician or your university physician, “What resources do you have to help me figure this out?” Nurse navigators, financial navigators, directions to…

Dr. Saltzman:   

…social workers.

Andrew Schorr:

Social—oncology social workers often make them that job. If not, at your center maybe there’s one nearby, right?

Dr. Saltzman:   

Yes, mm-hmm.

Andrew Schorr:

Okay, so now, the system is broken, right? So, we’re trying to put a patch kit on it right now as you have some very exciting things in medicine. And then, we have a kahuna here, and that is Medicare because many of us—Larry, are you on Medicare now?

Dr. Saltzman:   

I am now, I made it! My life goal: make it to Medicare.

Andrew Schorr:

I’m on Medicare. So, that’s kind of a fluid situation is: what are they gonna cover; we’re faced with catastrophic levels usually the beginning of every year; co-pays if we’re still working. I’m still working, so I’m in this category where maybe I don’t qualify for some of these assistance programs. And then, in some of the areas, some insurance companies—and maybe Medicare—will request what’s called “step therapy,” where there are certain therapies that you have to fail first…

Dr. Toomy:

..fail first, right.

Andrew Schorr:

In cancer—do you wanna talk that? I mean, some of these policy changes, because I know the LLS is concerned about that.

Dr. Nichols:      

We absolutely are and I think important for your listeners to know that we’re spending a lot of time in Washington advocating for considering the cost of care and not just the cost of drugs. I think a lot of the conversation has revolved around the cost of drugs, because there are many, many new drugs.

But the truth is: it is a bigger issue than just the cost of your medications. And so, we need to frame this so that our representatives in Washington actually understand that because most of them have excellent healthcare policies, and most of them are not under these kinds of stresses. And I think they’re shocked sometimes when they hear—when they get a 28-year-old who had junk coverage—and can’t get the bone marrow transplant they need to survive, because they have a pre-existing condition.

There are lots of things that just aren’t crossing the minds of our legislators, and these changes in Medicare, and step therapy, the idea that you have to get a less effective therapy first because it’s cheaper is really a tough pill to swallow, literally and figuratively.

Dr. Toomy:

So, we're learning here today about in myeloma, for example, it's very important that you get the right therapy first.

Dr. Nichols:      

First!

Dr. Toomy:

And if you do step therapy, that’s inferior therapy. So, we know that that—so we can’t have the insurance saying what is the best medical care.

Dr. Nichols:      

And we’re learning more and more about the fact that each therapy pushes the disease to a different molecular background, and why wouldn’t you want the best thing first?

Andrew Schorr:

Right, so if you got the wrong therapy, first of all, you may be debilitated by it, it didn't work, and…

Dr. Nichols:      

Yes!

Andrew Schorr:

…I mean, let’s face it, there may be some people who therefore won’t survive to get…

Dr. Nichols:      

Won’t ever be able to get the right therapy.

Andrew Schorr:

…what they should get, there would be more stress.

Dr. Nichols:      

Just drop out each time—each line of…

Andrew Schorr:

…so, I wanna make a couple of comments: so you never expected for you or a loved one to be a cancer patient and then you’re terrified when it happens. We’ve all been there.

Then you wanna get the right care. Hopefully, with modern medicine you start to feel better, do better, if you can get access to some of these things and we hope you can. Part of what you’re hearing now is there are public policy issues at play, certainly, in 2019 we'll face this. We have launched something called the “ABCs of Patient Empowerment” where we’re hoping that all of us can become smarter and then speak out. And let’s just talk about that for a minute, they’re calling your organizations, they’re speaking you as a doctor, but we maybe need to have a louder voice.

Dr. Nichols:      

We have thousands and thousands of volunteer advocates, and I would really urge the people who are listening who say, “I wanna do something, this is so frustrating.”

Andrew Schorr:

Tell your Congressman!

Dr. Nichols:      

To join us, it is very easy! You can do it on your smartphone, you can do it on your computer, or you can come with us to both your state or the federal legislators and talk with them directly.

And we will help make that happen, it is so important! It’s great if a doctor goes there, and the Chief Medical Officer of LLS, and blah, blah, blah, blah, blah; but if a patient goes there and says, “I’m your constituent and this is how your policies are affecting me,” it is much more meaningful than my very academic discussions with them. And we need you.

Hildy Dillon:     

Yeah, yeah. So, ditto! But at the Cancer Support Community, we're doing the same thing, and we are—we coach people to be articulate and go to their state legislators because, really, it’s all about votes and constituents. And when people—when our state legislators understand the struggles that people are having—and this is in oncology and in other illnesses, as well—that’s important to them, we hope that that would make a difference.

But we are—there are people that they think, “I can’t, I’m too shy, I’m too nervous about going to talk to my state legislator,” we will help you.

Dr. Nichols:      

Yeah, and you can do less!

Hildy Dillon:     

And we coach people and usually it’s people that initially didn’t think that they could do it that become the strongest advocates.

Andrew Schorr:            

Right, in the media too, if you live in a suburban area there may be smaller newspapers, or there may be groups that you can talk to, go on a radio station, whatever it is but speak up, help other people in your community understand. This isn't a way to make an end run around, but I just wanna talk about clinical trials for a second, because all these medicines, and testing, and everything, everything to get to the goal line with FDA has to go through a clinical trial.

It is worth raising then, isn’t it, Kathleen? For instance, even at the community level is there a trial I could be in that you think may be right for me where the cost of the care will be underwritten by the drug company, or whoever?

Dr. Toomy:

So, that’s—a very good reason to consider a clinical trial is that if this is a drug that's not yet FDA-approved, you won't be paying for that on the clinical trial. So, the clinical trial is important, because we wanna cure cancers, and we wanna take care of people. You would get the standard of care. but you may get something better, and that something better you won't be paying for you, and you won't have to worry about co-pays, and any extra tests that you have outside of the standard of care will be covered under the clinical trial. So, that's a big motivator for me to offer my patients clinical trials, and especially people who don't have the resources to pay for the regular things.

So, clinical—I feel strongly clinical trials are really important. So, for patients getting the education about the disease considering a clinical trial for treatment, you know that you’re going to get standard of care, and you’re gonna be watched very closely. I was an IRB chair for 15 years and I have…

Andrew Schorr:

Investigational Review Board.

Dr. Toomy:      

…Review Board, and I have a strong background in clinical trials. So for me, it’s all about curing cancer, that’s what it’s about.

Andrew Schorr:

Amen. So, one other thing, Gwen, just so we understand how it works: if somebody’s in a clinical trial, and then the FDA says, “Voila! Like what’s happened in EML, boom, boom, boom, it’s approved,” if you remain on that medicine, in many cases do you continue to get the drug for free?

Dr. Nichols:      

The hope is that you do continue to get the drug for free. There are occasionally companies that say, “I’m sorry, that’s it, you hit,” but they have to have prespecified that, that if the drug gets approved, or you will only get it for two years.

If they haven’t, then the drug should be made available, and we certainly can help you with that if you’re on a trial and you’re afraid you’re going to lose your ability to get the medication and it’s approved.

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Page last updated on January 18, 2019