#metsmonday – Insurance crapoola

This article has been making rounds on FB and could not have come at a more fitting time as I am finding out I need to participate in an external review to get the chemo I received from last fall covered.

I don’t know how many peer-to-peer reviews my oncologist, Dr S, has had to go through already, arguing my case up till this point. I received a approved therapy for Her2 metastatic cancer. The issue I gather is that I did things out of order.

My initial mets diagnosis was metastasis to the brain. I had two large tumors surgically removed, took part in a drug trial and then had radiation. At that point, no cancer, via CT scan had been detected in my body. I was prescribed an oral therapy that would cross the tricky blood-brain-barrier and help kill any residual cancer there.

Right before I started taking it, a scan showed small lesions on my liver. We decided to wait and see if they grew. Two scans later, they had not changed much so I finally got a liver MRI. The liver MRI showed that the lesions were consistent with liver metastasis. Since they were there before I had begun my new line of therapy we decided to continue that therapy but add in a chemo drug. This added up to a common therapy used in Her2 mets but one generally used as a third line therapy, not a first. But since this drug combo was able to treat both my body and brain, it made sense as a first line of therapy FOR ME.

A few months later, when a scan showed liver progression, we decided to switch to first line therapy – which is a taxane chemo with two targeted therapies. This is the therapy, insurance is trying to deny. From my understanding, the grasping at straws argument they are trying to make is that because I did things out of order, the therapy should be considered experimental and not be covered – even though a Taxane plus the two targeted therapies are a recommended and proven therapy in the established guidelines. But I did things out of order because my cancer is different than other people’s cancers. Mine showed up, or at least gave me symptoms, in the brain first. That isn’t real common but it is getting more common among the Her2 subtype. But because the insurance “doctors” are not specialists, they don’t get these nuances. They don’t get why it was the right decision for me, to do treatment out of order. That I needed to attack the lesions in my brain, then switch gears and attack the lesions in my body. That’s also why they didn’t understand that the patient in the article above needed a PET scan over a CT. We are just numbers on paper, not actual people with unique disease profiles. They don’t want to come across that way, so they throw in chummy terms like “peer to peer.”

Sorry but I’m not getting warm fuzzies here. I’ll save those for Dr S and the great medical professionals who put in long days at work, sacrifice time with family and loved ones and have to fight this BS on top of everything.

As much as I’d love to rail against the US healthcare system, the treating every patient the same and the ticking off of abitriary guidelines (that conflict with the actual guidelines) is an issue in many other countries. That’s why it took so long for the NHS to approve Kadcyla. That’s why many Canadians cannot access Ibrance. That’s why Herceptin continues to be cost-prohibitive for South Africans.

Our lives are more valuable than saving a buck. Patients deserve more and our talented doctors deserve more than to be patronized.

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#tbt – International Women’s Day and Moroccan mamas

As we honor strong and hardworking women all over the world today, I wanted to take a moment to reflect on the Moroccan mama.

I have stayed in her houses. She is old enough to have deep lines on face from a lifetime of work but not quite old enough to have “matriarch” status. Her house is full of children, grandchildren, in-laws, random lost American backpackers (full story at a later time) and others who may stay for a few days or a few decades.

She is the first to wake in the morning and the last to retire at night. In the morning, there must be mint tea and coffee ready as the others waken. A platter of bread, eggs, olives and cheese emerges from the kitchen. She urges the adult children to “eat, eat” to fill their stomachs before they set off to work or school. Then the attention turns to getting the grandchildren ready for the day.

a Moroccan mama does not want anyone to go hungry. That means cooking lunch is started as soon as breakfast is finished. Preparing dinner is started as soon as lunch is finished. And between, there are snacks and endless cups of mint tea. The adult children wander into the house and nosh as their schedules permit and there’s always houseguests and visitors. Every visit means a new platter overflowing with bread, olives and mint tea. A. Moroccan mama pretty much lives in the kitchen.

Everyone must have clean clothes. That might mean hours of washing by hand or one or two hours of sitting by the rusty old washing machine, making sure it keeps running and then hanging everything up to dry.

The grandchildren will need snacks when they get back from school and then the Moroccan mama runs around breaking up scuffles, making dinner and baking bread with the kids constantly underfoot.

A Moroccan mama worries all the time. About her children and her grandchildren. About the various dramas, from old family feuds to whether her former son-in-law will try to kidnap the grandkids. About whether everyone has been fed enough.

Late at night, sometimes the Moroccan mama will fall asleep with a grandchild snuggled at her side. Mostly though, she will stay up to make sure any stragglers are properly fed, the kitchen is cleaned and her loved ones are tucked in safe for the night.

The next day, it all begins again…

Thank you, my hardworking Moroccan mother-in-law. You raised a great son. Thank you for trusting me with him.

#metsmonday – Triple Negative

Remember when I did a blog covering different breast cancer subtypes? Will, I’m going to talk about one of them, in honor of Triple Negative Breast Cancer day, which was the past Saturday.

I have Triple Positive Cancer. That means my cancer expresses all three of the commonly tested for receptors – the estrogen receptor, the progesterone receptor, and the Her2 protein. So what would be the opposite of Triple Positive? Triple Negative, which means a subtype that lacks the three receptors. Since there is no known receptor to target, there aren’t as many treatment options as there are with other subtypes. Triple Negative disproportionally affects young women, which you think would move it higher up the priority chain as far as finding treatments, but unfortunately that has not been the case. While Her2 positive and hormone positive subtypes have benefited from progress in finding targeted and hormonal therapies, TN has not had the same luck, although there are new therapies coming out like PARP inhibitors (IMO, the most promising development but unfortunately only benefitting those who have the BRCA mutation).

Why should you care about Triple Negative breast cancer?

1) Because it disproportionately affects young women. In Swaziland, one of the reasons HIV was seen as such a public health crisis is because, it very often affected young people. When young people are targeted by a disease, it affects society as a whole by targeting productive, employable workers and parents or would-be parents. When young people get cancer, we should have the same sort of investment as when they get HIV.

2) Because it makes up 15-20 percent of all breast cancer. Since 1/8 women will get breast cancer in their lifetime, it is likely you will know someone with TNBC at some point.

3) Because cancer can mutate. If you are a survivor of some other type of subtype of cancer, guess what? Your cancer could lose it’s receptors and mutate to TN. (And the opposite can happen as well – TN can mutate to hormone or Her2 positive.)

4) Because it is especially aggressive. And because of the lack of targeted options, when progression happens, it’s a much bigger deal than in other subtypes. And early detection is certainly not a cure. I know of a young women in one of my online groups that passed away last summer. She started out with a 5 MILLIMETER tumor.

5) Because it disproportionately affects African-Americans. This is a group already more likely to die of breast cancer than white women.

6) Because we are sick of losing friends. One of the first young women I “met” online back in 2014 had TNBC. She was first diagnosed at the age of 28 and was gone two years later. Since then, I’ve seen the same scenario play out countless times – like this blogger who I followed and admired greatly back in the spring and summer of 2015. She was dead a year after her initial diagnosis, despite doing every treatment under the sun. I’m sick of it. I’m sick of getting the sinking feeling after seeing a FB update or getting a text message. I just want my friends to stop dying.