Why You Should Speak Up About Struggling to Pay for Treatment

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Even with insurance, many chronic lymphocytic leukemia (CLL) patients struggle to pay for their care. What can patients and families do if they have medical bills they can’t afford? Who on your healthcare team can provide assistance? Watch as a panel of experts discuss the importance of communication and resources to help with financial issues.

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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.

Andrew Schorr:               

Right, so I wanna about that—right. You mentioned as a physician people don’t always level with you, maybe they’re even embarrassed to tell you.

Dr. Nichols:                     

Of course! 

Hildy Dillon:                   

Yeah, there is a shame that goes along with—yeah.

Andrew Schorr:               

Right, there’s a shame like, “Oh, my God, I’m struggling to pay for this,” or…

Dr. Nichols:                     

Or your doctor won’t like to hear it or…

Andrew Schorr:               

Yeah, or “They don’t have time.”

Dr. Nichols:                     

Yeah, they don’t have time, yeah.

Andrew Schorr:               

“I don’t wanna burden him with that because they’re trying to cure my –

Dr. Toomey:                    

So, it's the insurance companies that come to us and say, "Hey, listen, this patient isn't getting their prescriptions filled, did you know that Doctor?" and the answer is, "No." We do ask our patients, "Did you miss any doses this month?" and that actually helps. When you start to ask about adherence, "Oh, maybe—" and you could tell, "Why did you miss it?” “I missed it because I don’t like the side effects,” then we can deal with that; or “I missed it because I really can’t afford it.” I think with the more expensive drugs, we know. We know immediately because either they can or they can’t afford it. You have 60% of all bankruptcies are medical in this country, the system is broken! 

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. 

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.

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Page last updated on September 9, 2019