Dealing with Insurance Denials

[Steff]

Hi all,

I am looking for some help....after 5 years of lung cancer treatments and having ZERO difficulty with insurance (my mom has Medicare and private secondary insurance), we have come to our first road block.  It is in relation to her suggested maintenance treatment for her newly diagnosed leukemia.  I know that many of you have had insurance issues and I am just wondering how to proceed.  Any help is appreciated!

Here is the rundown - my mom was successfully treated for Treatment-Related Acute Myeloid Leukemia (yes, her leukemia is from her previous lung cancer treatments, but don't worry, we have been told that leukemia related to lung cancer treatment occurs in less than 1% of cases).  Luckily, she has been in remission from her first induction treatment.  Unfortunately, she does not qualify for a bone marrow transplant because she needs oxygen to exercise (darn that lobectomy!), but she has a mutation that has a targeted therapy.  While this targeted therapy is typically taken with initial chemo to help with remission, her prescribed treatment is for maintenance, after treatment has ended.  This is a relatively new way to try to keep a patient in remission and apparently can be quite successful.  Long story short...even after appeal, Medicare (and then ultimately the secondary insurance) has denied the drug.  Their reason is because she will be taking a larger dose than normally prescribed and for a longer period of time.  Again, this isn't a typical use for the drug and I am not finding that there is a similar clinical trial for her to take part in.  Unfortunately, all of the trials are for folks who are in initial treatment, unable to reach remission, or have relapsed.  At this point, my mom does not fit into any of those categories.

Do you have any advice on how to try to get insurance to approve a life-saving drug to be used in an a-typical fashion?

Thanks in advance for your help,

Steff

[LUNGevityKristin]

Hi Steff, who is the drug manufacturer?  You might be able to reach out to them for financial assistance.

 

[LexieCat]

There are five levels of Medicare appeals--including administrative proceedings and, ultimately, judicial proceedings. If you've exhausted only the first level, you'd go on to the next one. 

This looks like a handy brochure for navigating the process: https://www.cms.gov/outreach-and-education/medicare-learning-network-mln/mlnproducts/downloads/medicareappealsprocess.pdf.

I assume the doctor recommending the treatment is relying on one or more studies suggesting this is an appropriate maintenance protocol? 

I'm sorry you guys are having to struggle with this--it sucks to be at the mercy of a bureaucracy.

[Tom Galli]

Steff,

Insurance denials are a pain! I didn't know your mom's AML. I can't help but wonder why the prescribing doctor cannot conform your mom's necessary dosage into something Medicare will pay for.

The only thing that sucks worse than uncooperative medical insurance is lung cancer!

Stay the course.

Tom

[Rower Michelle]

Hi Steff, 

The exact same situation occurred with one of my ALK Positive peers!  Since Medicare is a federal program, managing the appeals process was almost pointless.  My friend had to file complaints with both her Senators, Congressional Rep, and finally the State Attorney General.   In the end it was the AG office that contacted someone in Washington DC that got the approval for the dosage increase.   A few of the other ALKs with private insurance had the same problem when their ALK inhibitor (targeted therapy) was prescribed at above the recommended dose.  It was a major hassle that the insurance company denied, ultimately their State AG was able to resolve it pretty quickly and successfully. 

Good luck- start hitting the phones tomorrow morning. 

Michelle 

[Steff]

Thank you all -

I contacted the drug manufacturer yesterday.  They have 2 programs to help pay for the drug, 1 she doesn't qualify for, the other is a process but at least I got it started.  We have an appointment with her oncologist on Tuesday and I warned the oncologist that I expect for her to make time during this appointment to discuss further options.  It's hard with my mom's chemo brain to get exactly what was said by her docs.  But I plan to get to the bottom of it Tuesday!!  I am keeping my fingers crossed that the drug company offers her financial assistance and I don't need to battle Medicare!  I will let you all know what I come up with.  Thanks again!

[Steff]

Just a quick update - my mom received her prescription yesterday, no cost to her through December.  Thankfully the drug company has a program like this.  The company was really easy to work with and very responsive.  Unfortunately though, my mom is already out of remission from leukemia, just 3 months after treatment.  Currently, she has 3 treatment plans, the first being the drug she just received.  So it's a good thing she got her pills!  

If I can give 1 piece of advice for anyone dealing with insurance denials for prescriptions, start with looking into the drug company.  The drug's website will probably have information if they have a program to help with paying for the drug.  If not, call their customer service/patient program.  I found this was the quickest thing to do, concurrently I was contacting my mom's insurance company, but that process was going to take much longer.  So I went with the quickest and easiest - the drug company.  We had approval within a week and the drug delivered to us the following week.  We would have had it even quicker if the drug didn't have to come from a specialty pharmacy.  I would still likely be fighting insurance if I began the process with them.

[BridgetO]

Hi Steff, I'm glad this is resolved. Good work! Give mom a hi and a hug from me.

Bridget O

[LexieCat]

What Bridget said--hi from me, too! So glad you navigated this hurdle. It really shouldn't have to be so hard, should it?

[Jesse L.]

I'm with everyone else here...so glad you got it resolved. This shouldn't have to happen in the first place. We need patient centered care where Dr.'s decide what is best for a patient and they get that care; period. What we have instead is beauracratic BS care guided by distant decisions based on the best interests of the bottom line!!! Enough already!!!!!😠😠😠

[Lisa Haines]

Thank goodness for the compassion and generosity of the drug manufacturers -- They often the the most helpful in these of situations.   I'm very happy they are providing the drug for her and hope they will continue for as long as it's needed and is effective.

I have been through previous denials with a Commercial Insurer and the "darn" companies they hire to review procedure and claim and it was so upsetting and stressful to find out the in my case (Much needed surgery was denied as not being medically necessary).  I was so angry and upset as this happened to me only days before I was scheduled for the surgery and this was surgery I had to put on hold due to Covid and had waited months to have.   My Husband had booked time off and we had all the plans in place to have the surgery on a planned date/time when Covid cases here were low and I felt it was safe.  TO learn less than a week before  surgery, after I had already had all my pre-ops testing and labs/consult that my surgery had been denied was beyond belief.

 Thankfully my surgeon and I made several frustrating calls and a peer review was rushed and ultimately they did approve the surgery.  But get this, the reason it had been denied was ALL an error, because some "doctor wannabe" who works for the review company incorrectly read the procedure that was being done and flat out denied it?     ALL because some one did not take the to read the "actual" procedure.  I later did some research and learned that this happens more often than not and that many of these "medical reviewers" are "medical professionals" who never made it through "medical school" and are even always actually educated enough the make these types of decisions.   It was a huge wake up call and one that I reported to anyone who would listen.   To this day, I've yet to receive a formal "apology" form the insurer or their review company and now that I no longer have that coverage, it's sadly not likely that I ever will.  But I have reported it to my local legislators and to send an letter to both the insurer and the review company to complain about their lack of empathy, especially to a patient dealing with Stage IV Cancer.    I was irate and started to wonder IF I had actually been denied because I am living with "terminal" cancer.  My surgery was not cancer related but was very routine "hip replacement" and I had already had my other hip replaced 4 years prior without any denial or question.  It was very clear that this was medical necessity and very annoying to have it denied ALL in error?   Or was it?  I'm not sure I'll ever truly know the true facts in my case.

It totally caused unnecessary stress and aggravation to my and also to my surgeon.  So......never giver and fight hard to get the coverage that we deserve.  You may just find that the denied was a mistake?    I know with Medicare this process may be for more difficult, but I would still fight it as hard as possible to prevent it form happening to others.  I do not feel any insurer should stand between cancer patients and care they deeply need.

Okay.....RANT OVER!  

[Steff]

Lisa - I am happy that you got your hip surgery figured out with insurance.  I get so frustrated when I have to advocate aggressively for my mom to get the care she needs.  If it weren't for my advocating, she probably would have succumbed to lung cancer 3 years ago.  I feel bad for folks who don't have an advocate to help them navigate our complex medical and insurance systems.  My mom was too sick to research and think about how to solve the problems she has had along the way.  I really noticed the lack of good healthcare my mom had while in the hospital during the month of December. No visitors were allowed so all I could do was call and check in with the nurses.  My mom was too sick and too doped up on Oxy to talk to me or ask about what meds she was getting/etc.    Nurses were so overworked that they were unable to assist my mom to the commode.  They ended up telling her to just go in the bed.  How humiliating is that??

Sorry for the rambling....as you can tell, this is a pet peeve of mine!

[Jesse L.]

I'm so sorry to hear that you have had the difficulties getting proper care for your Mom. And what a horrible experience she must have had in the so called "care" facility she was in. 

I might have had my complaints about the VA system, but never have I been physically treated badly in their care. I was hospitalized twice since my lung cancer diagnosis on 12/25 and the care there was very, very good both times. The first time the first meal I could eat was actually lobster and the second time I was on a floor of the hospital that had more nurses than patients (my care was exceptional). The second time as well I asked to stay one more day because I felt uncomfortable going home so early and they were very agreeable to that too. Of course, I've had some complaints with certain Dr.s, but never with the normal care at all.   

Just one more example of the care, upon being cleared to go home I was in the process of being on one knee tying my sneaker when a nurse unexpectedly came in my room and exclaimed excitedly "You didn't fall, did you?" I quickly explained that I was just tying my shoe and she told me that they do that...period. I didn't realize it then but apparently there's hell to pay if a patient falls on a nurse's watch. Oh, and that same nurse carried all my extra stuff down to the lobby for me (even though I could have easily carried it myself). And then when we got there she took all the time necessary to explain my schedule of meds to my significant other who was waiting for me there. Now that's care...!! ☺☺☺ 

[Lisa Haines]

On 4/28/2021 at 5:01 PM, Steff said:

Lisa - I am happy that you got your hip surgery figured out with insurance.  I get so frustrated when I have to advocate aggressively for my mom to get the care she needs.  If it weren't for my advocating, she probably would have succumbed to lung cancer 3 years ago.  I feel bad for folks who don't have an advocate to help them navigate our complex medical and insurance systems.  My mom was too sick to research and think about how to solve the problems she has had along the way.  I really noticed the lack of good healthcare my mom had while in the hospital during the month of December. No visitors were allowed so all I could do was call and check in with the nurses.  My mom was too sick and too doped up on Oxy to talk to me or ask about what meds she was getting/etc.    Nurses were so overworked that they were unable to assist my mom to the commode.  They ended up telling her to just go in the bed.  How humiliating is that??

Sorry for the rambling....as you can tell, this is a pet peeve of mine!

    I agree totally and it's huge Pet Peeve for me, as well!    Insurance companies should NOT be in charge of our treatments and I'll always fight to get the best possible treatment.