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Dear Stacey: Your Coverage Questions Answered

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Published on May 24, 2018

We’ve rounded up some of your Dear Stacey questions to find out what cancer patients can expect from their insurance plan, how to navigate and understand coverage, rights as an employee and more. Stacey Worthy, an expert in healthcare law and policy from Aimed Alliance, provides guidance on coverage and potential restrictions, and shares useful information on diagnostics and genetic testing. Stacey also discusses what insurance companies are required to give patients, steps to take if a claim for treatment or procedure is denied, and resources to help patients better access the cancer care they need and deserve. Watch now to learn more.

Sponsored by AbbVie, Inc., Janssen Oncology and Pharmacyclics LLC. These organizations have no editorial control. Patient Power is solely responsible for program content.



Aimed Alliance

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Transcript | Dear Stacey: Your Coverage Questions Answered

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.

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:

Hello and welcome to Patient Power in our Dear Stacey series.  I'm Andrew Schorr in California, and here we are with Stacey Worthy in Washington, D.C., noted healthcare attorney, counsel to the Aimed Alliance fighting for all of us so we have access to the care we need and deserve.  Stacey, welcome back. 

Stacey Worthy:

Thank you. 

Andrew Schorr:

Okay.  Stacey, we've been getting questions in that people have been sending to [email protected]  Let's tackle them.  Here's one that Mark sent in.  Mark wrote to us saying that his insurance company had recently denied a claim for a procedure that he believes should be covered.  How can he proceed?  He wants to know what are his rights if a company denies his claim?

Stacey Worthy:

So your rights really depend on your particular insurer and your state, so it's very fact-specific in that sense. But in general terms, if you're denied access to a treatment, then you have the right to appeal that denial.  So your insurer is required to provide you with a letter of determination explaining that, A, your claim was denied, and B, the reasons for why it was denied. 

With that information you can then work with a patient navigator or your provider to appeal that determination.  So the first step is always call your insurer, have a conversation on an informal level.  Sometimes that's all that's necessary.  It's pretty quick. 

If that doesn't work, typically you'll have to file a formal complaint.  Now, you're going to want to follow the complaint procedure outlined by your insurer to the T because if you do anything that's not following their policies, they could deny your appeal again.  So definitely make sure that you're doing everything correctly.  That's why it's really important to work with a practitioner or a patient navigator. 

At that point if they deny you again, you can work with an independent reviewer, and this is required by law.  It's somebody who is not affiliated with your insurer who will look through your paperwork, look through your insurance denial, find out what happened and make a medical determination on what they say your insurer should have done. 

If you still cannot get access at that point then you can reach out to your insurance commissioner or your attorney general and file a complaint with them.  And we have specific-state-specific information about how to follow those steps in a general sense at our website at, so that will provide you with a little more context. 

Andrew Schorr:

I was just going to say that more of us cancer patients now are having genomic testing to see our specific version of a cancer, and I've had experience where I was denied reimbursement for one of those tests. But the company that did the testing then has gone to bat with me with an appeal.  It's been pending for months.  There was an independent reviewer.  We'll see how it turns out, but, I mean, sometimes there are companies that will help you as well. 

Here's another question we got in.  This is from Jill in San Diego who says how can she confirm she gets the right genetic testing for her personally, and hopefully can it be covered by insurance since this testing is costly?  She really wants to know about the policies of the company related to diagnostic and genetic testing. 

Stacey Worthy:

So most plans are pretty inconsistent across the board about what they are going to cover and what they won't when it comes to diagnostic and genetic testing.  If it's a plan that is required to comply with the Affordable Care Act then typically they're required to cover some sort of diagnostic or laboratory services, although it's not—there are no specific services that they're required to offer. 

So, again, you're going to want to talk to your insurer and find out exactly what they cover.  You can find out this information if you just look at your summary of benefits and coverage.  All insurers are required to provide you access to that, so either they'll mail you your insurance plan, or they'll provide you online access to the plan.  And that will tell you exactly what they cover.  But if you can't find it in that plan, you can always call them. 

And as I said in the past, it's always important to get a second opinion from that insurer. So if the first person that you're talking to denies you or said that the service is not covered, ask to speak to their supervisor.  Unfortunately, with the diagnostic and genetic testing really there usually are a lot of restrictions on coverage.  Sometimes they require you to be deemed high risk. 

I know, for example, with breast cancer they may require you to have an immediate family member have breast cancer before they'll cover diagnostic—or not diagnostic but genetic testing.  Medicare, they require you to have a cancer diagnosis before they'll cover that genetic testing.  So it really does vary, but you should get an answer from your insurer. 

Andrew Schorr:

Right.  I'll chime in with a couple of things.  One is there's been a new change with Medicare that will liberalize to some degree some genetic testing for some cancers like certain stages of lung cancer. 

Also I'll mention that some academic centers and now something we're involved in called the Precision Medicine for Me Coalition is endeavoring to facilitate people initially with lung cancer but I think it will extend, where research organizations will pay for your genetic testing if it's not reimbursed with the permission from you that some of your tissue that's taken for that testing is given to research.  So that may be fine with you and might facilitate testing that otherwise wouldn't be covered. 

So it's a fast-changing field, and so it's important to check, see what's covered by your insurance, what are the hoops you have to jump through, how does it relate to your specific cancer.  Or if it wouldn't be covered, is there some other group like a research group or your academic cancer center that would basically eat the cost to benefit research?  We'll talk more about that in more Dear Stacey series on Patient Power. 

Stacey, here's a question we got in from Cynthia who says she's very worried about bringing up her diagnosis to her boss.  And she's saying what are the best steps she can take, what are her rights, what are some best practices for patients bringing up their condition in the workplace. 

Stacey Worthy:

Okay.  Well, generally speaking, you do not need to inform your employer of your condition unless you're going to be asking for an accommodation or you're going to be asking for medical needs.  So if you—you don't plan on doing either then you don't have to inform your boss. 

However, if you do want some sort of accommodation, then under the Americans with Disabilities Act then you have to tell and request a specific accommodation.  And accommodation just means some modification at your workplace to help you be able to do your job.  So if you're feeling fatigue or you can't go for the full workday, you may ask for a modified schedule, or you may ask for a space in your office where you could take a short nap or rest, things of that nature.  In that case, you will need to inform your employer, and I would recommend informing them in writing and documenting any conversation you have with your employer.  So make a note of everything. 

Same goes for the Family Medical Leave Act.  So the Family Medical Leave Act allows people in certain situations if you have serious conditions to obtain 12 hours of unpaid leave per week.  And it is a very fact-specific circumstance, so your employer needs to be a large employer, 50 people or more, and there are other conditions as well.  But if you think that you qualify or at least want to know if you qualify, then, again, you're going to have to talk to your employer. 

And you're going to have to give them enough information so they can make the determination that you do qualify.  This means that you may even need to get certification from your practitioner showing that your condition requires that type of need.  So that's something you may have to do. 

Another thing that you'll have to—that you should do in terms of best practices is making sure that you comply with any of your employer's policies and procedures because they may have a specific protocol that they want you to follow if you’re requesting time off.  And if you don't comply, you might not qualify for care under the Family Medical Leave Act.  So those would be my biggest tests. 

Now, don't disclose if you don't want to unless you need to have an accommodation or a time off, and if you do document everything.  Put everything in writing and follow those procedures that your employer puts in place.

Andrew Schorr:

Just one follow-up question.  Sharon wondered about this.  She was asking about the Family Medical Leave Act.  So if my spouse is diagnosed with cancer and I need to support them as they go through care, whether it's medical visits or recovering at home or hospital visits, is there any legal protection for me to support them just as much as if somebody were pregnant and I was helping at home or there was a new baby? 

Stacey Worthy:

Well, this is another fact-specific instance, so it really depends on your spouse's situation, his employer, even the state because sometimes states have their own Medical Leave Acts.  But generally speaking the Family Medical Leave Act does provide coverage for a spouse, a child or a parent.  So if you qualify under that act then you should be able to talk to your employer and see if you qualify and get that time off. 

Andrew Schorr:

Right.  And then you mentioned along the way about the size of the company, so at least under federal law, and I don't know how it varies state law, so if I work at like a small restaurant where there are just a few employees, are they obligated, or if is it only if I work at a big company? 

Stacey Worthy:

Yeah, it depends on the size of the company.  So they need to have at least 50 employees or more.  So if you work—I'm not sure how it works if it's a chain or a franchise, that sort of thing, but in general terms a company needs to have at least 50 employees or more.  And then there are other conditions to consider as well.  So let's say you're working off-site, you would have to work 75—within 75 miles of wherever your employer is located.  You also have to work for up to—you'll have to work for at 12 months before the time where you asked for the leave, and you have to work for a certain number of hours per year, which generally speaking equates to roughly 24 hours per week. 

Andrew Schorr:

Okay.  Well, we should mention that Stacey is the counsel to the Aimed Alliance which is working on looking at these laws and then working with multiple organizations to have improvements. Because I think any of us affected by cancer hear Stacey discussing this and we say, whoa, there are these gaps and we need to try to fill them when somebody's dealing with such a diagnosis as cancer. 

Now, for our audience, remember you can send email to us at [email protected]  And Stacey, spell your name for us.  S-T-A…

Stacey Worthy:

Andrew Schorr:

It's got the E in there, so [email protected], and we will take your questions and try to give you guidance, Stacey Worthy, healthcare attorney fighting for all of us in Washington, D.C.  Stacey, thank you so much for being with us, and I look forward to our future programs. 

Stacey Worthy:

Thank you for having me. 

Andrew Schorr:

Okay.  Stacey in Washington, D.C., Andrew in California, we're all working together so that cancer patients and families affected by it get the care and the coverage they need and deserve.  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.