Yes We Have No Bananas

I once worked at a private rehab company and I vividly recall this saying from our very insightful boss lady. She was referring to insurance companies,  “Yes we have no bananas.”  I was still very naive and couldn’t imagine this to be true. 

By the end of a year or so I had learned how to justify just about anything for third party funders. If you really wanted to do your job well it required impeccably written reports with solid reasons and financial incentive for the funder. I often struggled ethically with my work. I found it difficult to be truly “client-centred” when both the client and the funder were my clients. However, I had been creative in my treatment planning and arranged for a client to achieve her goal using her favourite four legged animals. The insurance company decided to videotape this when I wasn’t present and tried to use it against her. Luckily I had documented the program very clearly and the videotape was “thrown out” of court and a settlement agreed upon. It was pretty clear to me that I wanted out of private practice. Yes we have no bananas.

I then found work in Home Care - my forever job and my passion.  I am treated like a goddess there.  Most clients and families are appreciative for all I do.  I get results. I spend a majority of my time advocating for expensive, specialized medical equipment such as beds, mattresses, wheelchairs, elevators, and even major home renovations. Most often it’s with government agencies. I understand the challenges when I’m accessing tax payers’ money. Sometimes I am working with Extended Health Insurance providers and it’s usually straight forward. They accept my requests without much opposition. 

On one occasion I worked with lovely couple with complicated medical concerns and a tight budget. First they required a hospital bed and special mattress, then a lift system and finally a wheelchair. My client hadn’t been able to walk properly for over a year and more than anything, wanted a power wheelchair so she could get around independently. 

I did the usual justification to the insurance company. I sent in the correct paperwork with a “Request for Pre-approval” form.  And sure enough it came back stamped “approved.” The family spent a small fortune on the chair and submit the receipt to their insurance. The insurance responded, “We will not pay for this chair. You have used up your lifetime allowance on previous equipment and medication.” This seemed so unfair. I  called them and asked why they had initially sent a letter of approval. They told me that there was a clause in the letter that indicated it was not for certain.  So why bother with the pre-approval? Yes, we have no bananas.

Now it gets personal....

It was just over a month ago when I found out I had metastatic cancer. I also found out the medication Perjeta was available and had good outcomes. I was assigned a “reimbursement specialist” - lets call her Raffi - at the drug company to help work out the details of coverage. She was awesome. Raffi went straight to business getting funding organized through my extended benefits. On May 6 (our wedding anniversary) I got the good news that my plan would cover the drug AND I had NO lifetime maximum.  I had my first treatment on May 21 with just a few side effects.  I was told that if it worked, I would remain on the medication for life. My mindset moved away from “OMG I have metastatic cancer and I could die” to “it’s just like a chronic disease now - manageable for several years.” LIfe was getting better. I believed.

Then I received a call on May 28 from a “marbles in the mouth” man.  “Your plan changes June 1, your Perjeta will not be covered anymore, would you like to apply for financial assistance, but we only cover 25%, what is you combined income after taxes?” I said I’d call him back later. Whoa my head was spinning and I did not want to deal with that guy.  Yes we have no bananas. 

I got this call on my way to my liver biopsy. As I lay down for the ultrasound the tears started running down my face. They likely thought I was afraid of the huge needle. That’s easy for a cancer veteran like me. I didn’t feel like bringing up the fact that my cure may no longer be covered and I’d have to go begging for huge amounts of money - as in $7100 every 3 weeks. A simple fundraiser would not cut it. Borrowing was not sustainable. 

I made a quick call to my manager who was on vacation and then my union to track down the benefit change. Apparently I had a new plan due to a new contract and they had removed coverage for medication not covered by the provincial Pharmacare program. However, they had added birth control. Huh? Did anyone that voted on the contract understand the extent of this loss? If voters knew that that people with cancer could die without cutting edge cancer therapies would they have chosen a 2% wage increase? How come I never paid any attention to the dealings of my union. My BIG mistake!

The next couple of days as I laid low to let my liver heal I started on my new advocacy project - Get My Perjeta Funded Dammit (GMPFD). Oh and F#$% cancer for putting me here.  

I tracked down Raffi who immediately went to work helping me talk to my insurance and then my union about my funding fiasco. I discovered a small silver lining. In our contract a 90 day grace period had been added. Meaning that I should have Perjeta funded until August 31.  So we called the insurance company about this a couple of times.  The first had not heard about this grace period. The next said it may not apply in my situation.  I would have to submit the claim each time and see what happened. After hearing some desperation in my voice, she suggested I approach my union or plan administrator to write a letter detailing the medication, why I need it and more information about the contract. 

In the meantime Raffi worked with Dr Tequila to get a Special Authorization letter sent to Pharmacare to consider funding the medication. Dr Tequila gave me a ring and let me know he suspected it would be denied. He empathically expressed frustration at dealing with this situation. He has an advocacy streak in him and does not like the game playing that I’m so familiar with.

I spoke to someone knowledgeable at the union and they put me in contact with a key negotiator of the contract. I suggested I would write my letter (a personal justification just like I write in my work) and would appreciate if they could support me with details of the contract and submit the package to the insurance company. In addition I asked if I could I be considered a permanent exception to the new contract rules with the insurance company. Could they help me work with my employer to achieve this? 

It seems that all of my professional experience has led me here today. To be able to pick my way through the minefield of insurance coverage,   avoid becoming the angry no-one-will-want-to-deal-with-me  squeaky wheel; advocate for myself and hopefully for those who come after me. I am very good at it in my job and almost always get what a client needs. So help me BELIEVE I can do the same for myself please.

I’d like to leave a legacy. I’d like to see some changes. For example, why does it take so long for our provincial health to cover the cost of a well researched effective cancer therapy? We are sitting on the edge of an explosion of successful targeted cancer therapies. If there are delays in getting them funded, my survivor sisters and brothers could die.

It’s just not right to say to us “Yes, we have no bananas.” Fill up the damn bin and if you have too many, make some banana bread and smoothies. But never leave the bin empty.

Oh and don’t forget to vote whenever you can. An election, your union contract, whatever. It’s really your only chance to speak up about the big issues. 

For now, I think I'm covered until the end of August and I'll be working my ass off to find a way for this to continue. I did sneak my next dose in before the contract changed - it's just waiting for me at the pharmacy. Thank goodness!

http://www.youtube.com/watch?v=jT6JkceQ9FU