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Building the Best Care and Support Team

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Published on July 23, 2015

Transcript | Building the Best Care and Support Team

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:

Let’s talk about that. Shailja, did I get it right?  Shailja, sorry.  Let me ask you. How do you feel about family members coming to an appointment? And just hold that real close.

Shailja Amin:      

So I definitely welcome it. There’s a lot that the patient has to go through as far as going through the treatment, different side effects they’re experiencing, the term we call chemo brain.  So a lot of the information that I get is from the family members. And it seems to be more accurate. And that way, we can help better treat the patient.

Andrew Schorr:                  

So the way I see it now, and many people are seeing it, is the family unit is the patient. It’s not just you with the diagnosis as an individual.

And you all need to support one another. Now, let’s talk about communication for a second.  Dr. Szabo, so how critical is, in your mind, open communication? Because there are people here who hesitate to tell people or who to tell. They’re walking around with it. They don’t know what to say.  So whether it’s within the family or wider, how do you help people? What’s your view about open communication? 

Dr. Szabo:             

So one of the first things I discuss with my patients is who do you value the most in your world? Who is a part of your day to day?  And that’s the most important thing is to communicate where you’re at and possibly have that person with you joining you on this journey so that you have a support system here in the present and also as you move forward.  This will be the person who also may be coming to an appointment with you and help to explain the supplements that you’re on that you forgot to write down on your medication list or who will ask questions that you can’t ask during the appointment because you’re overwhelmed.

So the communication is huge among your support system, whatever that may be in your life, or it also is huge with your team of practitioners whether it is just a support staff or your primary providers. 

Andrew Schorr:                  

Melody, so you like to deal with families, too, right?  And there may be many issues like a cancer diagnosis. Oh my God, are we going to lose the house or whatever it is? Or a strain on relationships. So how do you help people connect with resources?

Melody Griffith:                

Well, there are a lot of resources that you might not be familiar with, and that’s why people like me exist to help connect you to those resources.  There are a lot of financial resources available. I always tell the patients it’s kind of like putting a puzzle piece together. So there are different things that will qualify you for assistance. One of them is income. They don’t look at your assets, so your home is not in jeopardy or anything like that.

They look at your income, just solely what comes in once a month or however many times a month and then your diagnosis and then also your treatment plan. But it’s not your job to put the puzzle pieces together. It’s ours. So you have a team that’s able to help if you ask the question is there financial assistance available? And we look at those things. And if there is something, we actually have a person now dedicated to helping you apply for those assistance programs and then managing it from the billing side once you’re approved.

Andrew Schorr:                  

And there could be a battle. So, for instance, Dr. Jain was talking earlier from a question I think that Andy asked about some of these newer drugs, which are expensive being used earlier. And you were talking about, Dr. Jain, how somebody might get one of these newer drugs earlier if they had this 17P deletion, which might be more aggressive.  But there could be a fight with insurance about it. And so you can help marshal the forces for that, right?

Melody Griffith:                

We do ask that patients be your own advocate with your insurance because we are, by no means, expert at—there are thousands and thousands of insurance plans.

So you can call there and try to get information. Also, at your doctor’s office or at the cancer center, ask if there is a financial advocate that can help explain those things to you.  We do our best to try and answer those questions. But, again, we’re not experts, but we do try to help.  If something is not covered by insurance, oftentimes, the drug manufacturer themselves, has a program.  Sometimes, it’s for free drugs.  And sometimes, it’s for discounted costs.  So those are all things. It doesn’t hurt to ask, because it might help in the long run.

Andrew Schorr:                  

Right. So let me go back to you, Dr. Szabo, for a second.  So it sounds like you’ve got to speak up. Bottling it up inside, worrying about money, worrying about the diagnosis or who you should tell or all that, it sounds like there are people, not that you should broadcast it or wear a sign, but there are people who can help. You can help.

Open communication with your doctors, with the physician assistant, with counselors, etc.  It sounds like it’s a good thing.

Dr. Szabo:             

It absolutely is. And one of the focuses that I sometimes am initially working with a client on is how do I advocate for myself? This is a very overwhelming process and overwhelming building and overwhelming entity for myself and my family. So how do I do that without stepping on toes? Quite often, I have patients who are worried about asking certain questions or even seeing another person for another opinion. And so that’s something that I can help [with] individuals’ journeys.

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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