Wednesday, December 9, 2015


Some of you may be aware that I've been at this health insurance mess for well over a month. My latest conversation with my broker was yesterday afternoon. "Ride it out. Everything is still evolving." As I understand it, the Attorney General in NYS is looking closely at what is happening.

Health insurance is a state responsibility despite the rules being developed by the federal government under the Affordable Care Act. In NYS, my options start at bad and move to worse. The policies with the better network options require a primary care physician and referrals. To this, I say why? After reading this article about the (in)ability of PCP's to coordinate care, if I'm still stuck being the care coordinator, team captain, quarterback, why I'm still being forced to choose a PCP so I can fight with that PCP for referrals. I'll go out on a limb here and say that many doctors in a given network that requires referrals are hesitant about giving out too many referrals for fear they will be dropped by the insurance company. Until proven otherwise, that's my stance.

How's this for an example of care coordination. I had a loved one have gall bladder surgery over the summer. His GI doc was aware of possible problems with his gall bladder. He was admitted via the emergency room and his GI doc is the head of the department in the hospital where he was admitted. A doctor in his practice ordered the surgery. About a a month after we were home, the GI doc called to find out when we were coming in to discuss the gall bladder issues. I happen to like this doctor very much but was anything on the damn chart. Hell, I had the color glossy photo from the surgery which was presented to me by the surgeon. And yes, it was kinda gross. Not only will we need a PCP to refer to the GI doc, the GI guy didn't even know the gall bladder issue was resolved. I believe, in English, we refer to this as a clusterfuck.

So no, I'm not a fan of this PCP option.

Now, let's go over to the drug formularies. I am still on femara. I have been on the branded drug since I began the medication. I'm scheduled to take this through mid 2018. I'm doing quite well on the medication. I can not know if it's doing its job since the fear of recurrence doesn't go away. It's on my shoulder just like it's on the shoulders of many of us living with early stage disease in post active treatment land. Survivorship. I can't know anything about efficacy, but I do know the side effects are minimal and I seem to be doing fine. And the science, the evidence, has been put on the table. I'm following an evidence based protocol which has been heavily researched. Remaining on an aromatase inhibitor is the best option for preventing recurrent disease.

I also know my mom began on branded femara after her second primary. She began taking the drug just months after I started my own treatment. We compared notes. Yesterday, I asked her to see if she could dig through her pharmacy records. She had to switch off the femara to arimidex. I remember her walking around with a black wrist brace for quite some time. It was one of those giant things that begins between the fingers and goes well past the wrist. There were three velcro straps to keep the thing in place. I'm wondering if this wrist thing was because she was switched from brand to generic or if she was still on brand and the joint pain, which is a known side effect, was something that she couldn't tolerate, brand or otherwise. However, if if was indeed a switch off brand, why would she not have been kept on the same medication, but put back on brand rather than switching to a different aromatase inhibitor entirely. I'm curious.

After reviewing my insurance options for January, I have exactly two plans I am considering. One doesn't require a PCP, the other does. Neither includes femara on their formularies. It's letrozole or pay out of pocket. Or, I suppose, fight. Frankly, I'm tired of fighting. At this moment in time, I am fighting on more fronts than I care to even discuss. The pharmacy benefit managers are causing a problem. I was featured in a CNBC piece about this precise problem. They claim they are putting patients first. And yet, this is the quote: "If you can narrow the networks, you can increase access and affordability..... if we can't get to the price we need, we're willing to go exclusively with one manufacturer."

So here's my issue. I have read about the issues experienced in several breast cancer forums when patients switched from brand to generic. Side effects increased exponentially which is why I'm wondering about my mom. Different manufacturers seemed to be tied directly the severity of the side effects. Worsening joint pains are mentioned frequently, hair loss and awaking at 4AM is bantered about, hot flashes more than quadrupling was another good one. Best of all, one woman mentioned rising tumor markers. I'm well aware that this is all anecdotal, that not one of these statements is backed by a clinical trial where the generics were placed head to head against the brand. But Still.

Patients matter and damn it to hell, why are we not including patient reported outcomes when these decisions are being made. Does quality of life matter or is it only about getting the necessary price? Can someone at least look into these issues? Yes, the woman with the rising tumor markers may have metastasized regardless. Or Not. But absent any sort of studies, we simply do not know and no one is asking the questions and for me, this is a big problem.

All generics are obviously not created equal. The women in these forums where naming the manufacturers and some learned that there was one particular drug that seemed to be cause little or no change when the switch was made. In one of those moments, it turned out my mom had an appointment with our oncologist within days of the airing of that piece on a local PBS station. He saw it and began to question my mom about my averse feelings regarding generics. The thing is, I have no "thing" against generics, I have concerns about some generics.

My cancer medication is a concern. He explained that I could find who is making the exact version of the brand. It made me think of what I read in the forums. Those with the limited change in side effects were likely taking some very close version of the original. Perhaps I have a solution? I may have found the answer but when I called the pharmacy, they don't stock that particular manufacturer and a request would have to be submitted for approval. So, we now have a second layer of approval. Not only is the brand not covered, I have to fight for the generic I want?? I guess that goes directly to the aforementioned quote about exclusivity with whomever is providing the "price (we) need." Seriously??

I had my own issue with Wellbutrin XL which has been well documented as a problem generic. It's been reported by outlets like the Wall Street Journal. Personally, I feel Forbes captured the story quite well. The issue with the Wellbutrin was known for years. Patients knew it but it took years for the FDA to finally listen and pull (some, many, all) generics off the market. I was in fetal position for a month before I realized, that pill doesn't look the same. The doctor put me back on brand and viola, I was back to normal which, according to some in my world, still makes me a bit over the top but that's a story for another day.

Generics are supposed to have the identical amount and compound of the active ingredient in any branded medication. The thing is in the fillers and the coatings. Each manufacturer can use whatever filler they choose and while I'm not a chemist or a pharmacist, I have to believe that any compound has the potential to interact with any other compound. Good, bad, indifferent. It seems that's simple Chemistry 101. In fact, it may even be high school chemistry and not even an AP class, at that.

What to do? There appears to be one solution according The People's Pharmacy which is a website filled with lots of great information. Did you know there are a class of generics known as authorized generics? An authorized generic is identical in every ingredient to the brand and thus, authorized by the brand manufacturer who provides the the generic firm with its own drug or gives them the exact instructions on how to duplicate the product in its branded form.

And there you have it. And to that I say, "I'll have what she's having......"

Like it?  Share it!


  1. I completely understand your point about generics and cluster PCPs, but may I make a suggestion? I switched from Femara branded to Letrozole with no issues. Every one is different I know. But what if you tried the generic and then switch to Femara if you had issues?

    1. I can't switch back. Femara isn't on either formulary. I will have to pay out of pocket and it won't go against my max out of pocket either. Curious. Do you know who's manufacturing your letrozole? I'm trying to get the manufacturer of a generic approved by my pharmacy. I think that's annoying me more than anything. OK... so I can't get the brand but now I have to take the generic that was most cost effective for the pharmacy benefit managers? Remember, too. I'm shell shocked. I can't begin to even explain what happened when my wellbutrin stopped working. I was non-functional for over a month before I realized what was happening. I think, too, I despise the fact that patients are excluded from all of these discussions and left with no options at all.

      Beyond that... how are you my friend??


  2. I know your concerns about generics and realized I am getting a generic Xeloda prescription which makes me grind my teeth a little. I wonder what it would look like if I pressured for name brand. Hmmm...

    1. I do too..... There are entirely too many variables for me. Hope you are well, Mona Lisa... I mean... Mandi. xoxo

  3. So let me add another angle on how fucked up pharmaceuticals are in the US (sorry for the language, but this system really is broken)... I have celiac disease, even the tiniest amount of gluten can make me really sick ... and yet, drug companies are not required to disclose the use of gluten in their products ... how ridiculously stupid is that? When the FDA requires that foods labelled as "gluten free" have a specific minimum amount of gluten, and yet drugs are completely unregulated... so ya, I hear ya when you talk about how generics may very well not be the same as the brand equivalent ... and I find it even more frustrating to not have any control over which generic I get, such that I cannot even develop a tolerance for a particular brand of generic ... not at all looking forward to starting AIs in a couple of months ... uggg ...

  4. Thank you for the link to the People's Pharmacy!


Something to add? Do Share!