Access to Better Care: Overcoming Financial and Insurance Barriers - 5 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


Access to Better Care: Overcoming Financial and Insurance Barriers

Andrew Schorr:           

All right. None of us want to be diagnosed with a cancer—or a loved one—and that’s a heavy burden to deal with, and Eliot’s been dealing with it for a while, and he’s had his windy road, doing well now.

I’ve had mine for 22 years, and then with a second condition for the last seven years, so it’s enough to deal with it just ourselves, and now we’re saying deal with these insurance issues, now you’re getting older, dealing with Medicare instead of these insurance issues. Should you be on some mix of the two?

And then, we’re saying speak out because the insurance companies are trying to pocket more money or spend less money, and we talked about those pharmacy benefit managers, and Medicare is trying to control costs, and the Affordable Care Act is going under review, and some things are sunsetting—some provisions that Stacey talked about. So, unless we speak up, we’re caught in the middle. Eliot, would you agree?

Eliot Finkelstein:         

I would agree. You’ve gotta do everything you can to watch yourself and pay attention.

Andrew Schorr:           

Right. And, I will say just a couple of other things. The doctor, who often is so busy practicing medicine and managing the complexity of leukemia care now with all new choices, testing, et cetera—it’s a lot for them to do. But, trying to help with the financial issues – and, I’ll just take a little story because you’ll hear it in this program coming up that we recorded the other day at the ASH meeting.

So, we had a community doctor from Somerville, New Jersey, Kathleen Toomey, and she talked about—she’s been practicing over 30 years—how, on her days off, she calls the insurance companies for her patients in fighting these battles. She’s an exemplary doctor.

Eliot Finkelstein:         

Wow.

Andrew Schorr:           

Not everybody does that. It is a “wow.” But, this is the battle we have—your doctor, nurse navigator, financial navigator may be able to help. Ask if they’re available.

Social workers can help as well. If there’s an oncology social worker at the clinic you go to—certainly, I went to MD Anderson, and they have them. If you go to a big hospital, they may have oncology social workers who may be very familiar with these foundations or these ombudsman programs. It’s a lot. Stacey, any final thoughts or advice for our viewers on how they can get access to what they need and deserve, and is it just to speak up? What would you say?

Stacey Worthy:

Yeah, absolutely. I think just reiterating the message that we’ve provided for healthcare—you’re your own advocate, so you’ve gotta advocate for yourself, and definitely, speak up.

Andrew Schorr:           

Okay. How about you, Eliot? Final comments from you?

Eliot Finkelstein:         

Like Stacey said, you’ve gotta speak up. You can’t be shy. And, bring someone else with you to all your doctor’s appointments. Even if they just sit there, they’ll keep an eye on you, make sure you ask the questions.

Andrew Schorr:           

Look at those bills.

Eliot Finkelstein:         

Look at those bills, and don’t pay your bills until you get all the bills for that particular situation, and you might end up—surgery, you typically get at least three bills, so you wanna see all of them and see what’s going on with everything.

Andrew Schorr:           

Right. One last thing is just a little bit about clinical trials. On an earlier program that we did with the Patient Empowerment Network, we did a program with a woman named Dana Dornsife with the Lazarex Foundation, and they provide support for people being in clinical trials, because often, in clinical trials, there are some things that are not covered, that are not free. Or, you may have logistical issues in participating in a trial.

We want you to consider being in the trial; that’s how we get new medicines, right? But, you may say, “I can’t get a babysitter, I can’t get off work, I don’t have transportation, and I can’t pay—my insurance company wants me to pay for that extra CT scan or whatever, and I can’t afford it.”

There are foundations like the Lazarex Foundation that fill in there so that your oncology social worker—or, we’ll remind you on Patient Power of this to deal with the cost. Hopefully, we can navigate this. Thank God people like Eliot and me are doing well with CLL, and there’s a lot of news coming out that we’ll be sending you from the American Society of Hematology meeting that just happened. So, all the best to you. Eliot, all the best to you. I wanna thank you for being with us, and Stacey, thank you for being with us once again.

Stacey Worthy:

Thank you for having me.

Andrew Schorr:           

Okay. Andrew Schorr, reminding you that we think about these issues for you and we’re gonna have programs, certainly, on treatment, research—all those kind of things coming your way, but also, work with us so we can speak up so you get access to the care you need and deserve, and the policies are right and fair for us. Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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

Page last updated on June 21, 2019