cancer

Insurance Companies are Vile

A December 2, 2019 press release on UnitedHealth Group announced that “revenues for 2019 are expected to approximate $242 billion, with net earnings to approach $14.25 per share and adjusted net earnings to approach $15 per share.”  Cool, cool.

UnitedHealth Group is ranked 6th on the Fortune 500 list. The CEO of UnitedHealth Group, David Wichmann, received a total compensation of $18.1 million in 2018, according to an April 22, 2019 article in the Minneapolis/St. Paul Business Journal.

A July 18, 2019 article in The Washington Post reported that “Two families of children with a rare and debilitating disease celebrated Thursday after UnitedHealthcare reversed previous denials and approved coverage for a $2.1 million gene therapy.” The article further stated, “UnitedHealth Group’s chief medical officer, Richard Migliori, said in an interview Thursday that public attention on the families’ plight played no role in the reversal. He said the decisions were based on clinical evidence.” Okay, sure, Jan. OF COURSE, NEGATIVE MEDIA ATTENTION PLAYED A ROLE IN THE REVERSAL.

According to a March 6, 2019 Jurist item, a “federal judge ruled Tuesday against UnitedHealth Group and its subsidiary United Behavioral Health, saying the insurer used overly restrictive guidelines to improperly deny benefits to thousands of mentally ill insureds.”

A May 1, 2019 article found on BenefitsPro.com reported that a federal judge “who survived prostrate cancer has stepped down from a putative class action lawsuit over a health insurance company’s ‘immoral and barbaric’ denial of a radiation treatment.”

Read it here for yourself.  “It is undisputed among legitimate medical experts that proton radiation therapy is not experimental and causes much less collateral damage than traditional radiation. To deny a patient this treatment, if it is available, is immoral and barbaric.”

These stories are not hard to find. Insurance companies will fight and claw for every penny. They raise our deductibles and out of pocket expenses until the point where we forgo important surgeries or medication just to live. A December 2019 Gallup poll recently announced: “A record 25% of Americans say they or a family member put off treatment for a serious medical condition in the past year because of the cost, up from 19% a year ago and the highest in Gallup’s trend.”

Yeah, I am one of these people. I am putting off a couple of surgeries because I cannot afford the deductible, plus I cannot afford to earn 70% percent pay on top of that. Once I pay off my basement waterproofing debt, I could perhaps afford to have the surgeries I need done for [redacted].

CNBC reported on February, 11, 2019: “A new study from academic researchers found that 66.5 percent of all bankruptcies were tied to medical issues —either because of high costs for care or time out of work.”

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The December Gallup poll also stated:

Reports of delaying treatment for a serious condition jumped 13 percentage points in the past year to 36% among adults in households earning less than $40,000 per year while it was essentially flat (up a non statistically significant three points) among those in middle-income and higher-income households.

As a result of the spike in lower-income households this year, the gap between the top and bottom income groups for failure to seek treatment for a serious medical condition widened to 23 percentage points in 2019. The income gap had averaged 17 points in the early years of Barack Obama’s presidency, but narrowed to an average 11 points in the first few years after implementation of the ACA, from 2015 to 2018.

I live alone and I’m single. I worry about the next medical crisis frequently, and if that’s going to be the one that forces me to sell my house, car or camera gear. What am I going to have to pay to stay alive? I have had my loved ones go, “Oh, well, your insurance company will cover you,” and not necessarily take my fears seriously. If given the opportunity, my insurance company will drop me because I’m expensive to keep alive and healthy. 

So congrats, UnitedHealth Group, on your stellar year! People are forgoing medical procedures and rationing medication while you all celebrate a profitable year. Good job, guys.

 

The In Between

After I was done with active treatment, I never really felt comfortable with the label “survivor,” and bristled whenever someone called me that. As the daughter of a woman who died of metastatic breast cancer, I never liked the word “survivor” because I’ve always known my cancer could come back.

I have been revisiting the idea of being a “survivor,” ever since learning I have [redacted]. I’ve had cancer twice, but I haven’t survived anything. Can you be a survivor if you’re 99 percent sure it’s just going to come back in some way, shape or form?

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So what am I then? I have come to the conclusion that I am 100% not a cancer survivor – there’s no after for me. This is always going to be my present. I’m just not a cancer survivor, and I will shake that label off me for the rest of my life, swatting it away like a fly.  The label that finally describes me and the label that fits is Mutant.

I. Am. A. Mutant.

To me, a mutant lives in the in between, existing in between two worlds. I live between the “healthy” world and the “sick” world. I am training for my fourth marathon, and I consider myself pretty strong right now. I run four days a week and strength train two days a week, but I am not part of the “Healthy” world.

I have a team of doctors dedicated to various different, um, ailments. I have regularly scheduled scans, although some I have postponed for way too long. I am not currently sick or in treatment right now, so I’m not really part of the “Sick” world. I haven’t had a surgery in 2.5 years, which is a good stretch for me. When I can go a couple of years without a surgery, I feel like a success.

I am going to be seen for my mutant life and my mutant problems for the rest of my life. There are going to be stretches where I’m sure I’ll have setbacks and find myself in the “sick” world (aka active treatment).

Survivor implies that I have put cancer behind me, and taken up a bright-colored boa and survivor sash. When you have to continually to see doctors for the rest of your life to ensure that your one cancer hasn’t come back and you haven’t developed any new ones, this isn’t in the rear view mirror. Hell, it’s in the passenger seat riding along with me.

There’s a beauty of existing in the in between. I have answers and no longer deal in uncertainty, and there’s a peace that comes along with that. I cannot change my DNA or its mutations, but I can find peace in acceptance. I can and I will.

My Version of the “Breast Cancer Awareness Game”

I have heard that this year’s “Breast Cancer Awareness” game is already rearing its head, and I have a couple initial thoughts.

First one being, come the fuck on. It’s not even October. It’s not even SEPTEMBER. Why why why?

My second thought is this, and will always be this, WHO IS NOT AWARE OF BREAST CANCER? Seriously, find me that person who isn’t aware of breast cancer because they need to have a talk with me. I want to know where they have been hiding for the previous 20 years and see if they need joining the 21st century.

Here’s the game: you receive this message.

“Hi beautiful ladies so here it is the time of year again when we try to raise awareness of breast cancer through a game. Its very easy and i would like all of you to participate. Last year we had to write the colour of our bra’s on our status. Men wondered for days what was going on with random colors on status’s. This year we make reference to our love life status as a flavor. Do not answer to this message just post corresponding word on your status and send this message privately to all the girls on your friends list. Blueberry is single, pineapple is its complicated, raspberry is I dont want to commit, apple is engaged, cherry is in a relationship, banana is married, avacado is I’m the better half, strawberry is can’t find mr right, lemon is I want to be single and raisin is I want to get married to my partner. Last time the bra game was mentioned on t.v let’s see if we can get there with this one. Please resend this to all your girly friends then update your status with your answer ONLY! DONT TELL ANY GUYS!
I hope to see lots of fruit 💝“

 

FRUIT, BECAUSE WE’RE TALKING ABOUT OUR MELONS, LADEEZ! AMIRITE OR AMIRITE.

Okay, here is what I want you to do if you find this word excrement salad dressed up as awareness in your message box, hit a reply all and send them this:

Hi beautiful ladies!  It is the time of year again when we try to raise awareness of breast cancer , but not through a game. Games are so 2016. Let’s raise awareness by education and outreach – what do you say, gals? This year, how about we make reference to the reality of breast cancer, and send this message privately to all the girls on your friends list. Post the following: 113 for the amount of women and men who died of metastatic breast cancer in the U.S. every day;  33 months for the average lifespan following a metastatic breast cancer diagnosis; men for the fact that MEN actually get breast cancer too; Metavivor for the name of a non-profit organization dedicated SOLELY to researching metastatic breast cancer; October 13 for the one day out of the month of October dedicated to metastatic breast cancer, the only breast cancer that kills; 6% for the percentage of women and men diagnosed with stage 4 initially; and 20 to 30% which is the estimated amount of those with early stage breast cancer who become metastatic later on. Let’s see if we can get real breast cancer awareness out there! Please resend this to all your friends and then update YOUR status with your answer only! Okay, if you want to add more, by all means. This is serious business, and it’s not a fucking game. 

I hope to finally see this being taken seriously! 

What do you think, friends? Are you in? Let’s drown out the pink noise with real action.

The Cost of Cancer

Given my own medical history—surgeries, chemotherapy, radiation, lions, tigers and bears—I am beyond biased when it comes to talk about healthcare and its costs. My bias is so strong that I am pretty sure I’m physically incapable of listening to Speaker Paul Ryan talk about healthcare without having a rage stroke.

RYAN: I’m not. Number one, health care is a complicated and very emotional personal issue. And we completely understand that. The system is failing. We’re stepping in front of it and rescuing people from a collapsing system.

And more importantly, we’re keeping our word. That’s really important here, George. People expect their elected leaders, if they run and campaign on doing something, they expect them to do that. And that’s what we’re doing. We’re keeping our word.

And I would argue that we would spell disaster for ourselves, politically, if that’s your question, if we go back on our word. This is us keeping our word. But most importantly, it’s us trying to fix a real problem that real people are experiencing in this country.

Gosh, I loathe this guy.

Sure, Speaker Ryan, a great way to fix a “real problem” in this country is to cost 24 million people access to healthcare. Next up, y’all should fix the real problem of animal abuse by legalizing dog fighting, or fixing the real problem of the opioid crisis by shutting down drug rehab centers.

Meanwhile, having health insurance alone is not a guarantee that one will emerge from a health crisis financially unscathed. Cancer, specifically, will cost you. No matter where you are in life, it will cost you, especially if you are single and younger.

I often wonder if most (and by most, I mean politicians) understand the different costs that come with being diagnosed cancer and all that treatment entails: co-pays, deductibles, medication, transportation, parking fees, as well as loss of income whenever you have to take time off work for appointments or treatments.

When insurance companies work their absolute darndest to make paying out your claims an Olympic-level feat or the drugs you need become so expensive that you cannot afford it, then those other costs add up quickly.

Cancer drug costs themselves are astounding. The drugs keep going up and up and up, all the while your pay remains the same or lessens because of all the time you need to take off. A July 1, 2015 US News report stated that “Out of the nearly $374 billion Americans spent on prescriptions in 2014, $32.6 billion – about 9 percent – was spent on oncology drugs, according to the annual report by IMS Health Informatics,” and “Patients typically pay 20 to 30 percent out of pocket for drugs, so an average year’s worth of new drugs would cost $24,000 to $36,000 in addition to health insurance premiums.”

When someone is sick and cannot afford their medication, it’s not like the medication fairy comes down and gives them the medication regardless. If a cancer patient needs a treatment that may save their life but they cannot afford it because it’s not covered under their insurance, then it’s not like they are going to get that medication anyway. That’s not how the system works.

Most of us experience what is called financial toxicity, defined by StatNews.com as “the problem of paying for cancer.”  The article stated further:

According to the [National Cancer] Institute, when a loved one develops cancer, the family’s risk of significant financial hardship becomes startlingly high:

• Between 33 percent and 80 percent of cancer survivors exhaust their savings to finance medical expenses.
• Up to 34 percent borrow money from friends or family to pay for care.
• For those who fall into debt, the level of debt is substantial. In a study of colon cancer survivors in Washington state, the mean debt was $26,860.
• Bankruptcy rates among cancer survivors are 260 percent higher than among similar households without cancer.

A November 20, 2012 study published in The Oncologist examined the financial toxicity of treatment, and what it found, should make anyone who thinks the current healthcare system is fine just the way it is be completely ashamed of themselves:

Insured patients undergoing cancer treatment and seeking copayment assistance experience considerable subjective financial burden, and they may alter their care to defray out-of-pocket expenses. Health insurance does not eliminate financial distress or health disparities among cancer patients.

Let’s say that one again for anyone who may not be listening: Health insurance does not eliminate financial distress or health disparities among cancer patients.

Discussing the price of cancer drug costs further, A December 13, 2016 Forbes article stated, “Many can’t afford out-of-pocket cancer drug costs until they meet their insurance deductibles, so they don’t take their meds, skimp on doses or wait before filling prescriptions.”

Recently, a March 15, 2017 NPR article reported: “One-quarter of all cancer patients chose not to fill a prescription due to cost, according to a 2013 study in The Oncologist. And about 20 percent filled only part of a prescription or took less than the prescribed amount. Given that more than 1.6 million Americans are likely to be diagnosed with cancer this year, that suggests 168,000 to 405,000 ration their own prescription use.”

I would have been completely and utterly decimated by cancer treatment if it wasn’t for my ex-boyfriend who supported me. The bills would have swallowed me whole, and he is the reason I kept afloat and didn’t have to move back home with my parents. I missed a lot of work. Copays and parking fees added up quickly.

A May 16, 2013 article published by CBSNews.com stated that “people with cancer were more than 2.5 times more likely to declare bankruptcy than people without cancer, with the likelihood even greater in younger patients.” The article further stated that “cancer patients who filed for bankruptcy were more likely to be younger, women and not white, the researchers found.” This is the part of the article that made go, well of course.

The authors point out that since a cancer diagnosis is often a sudden life event, younger patients’ bankruptcies may be influenced by preexisting debt, not having as many assets, having more dependent children and not having supplemental income of others in the household at the time of diagnosis.

When a young person is diagnosed with cancer, they are still waist deep in student loans. They haven’t been in the work force that long so their savings are slim to none and their salary can barely cover standard living expenses. When a catastrophic event like cancer occurs, how are they going to fully cover all the costs that come with a diagnosis?

A January 5, 2016 Reuters article reported that “one third of working-age cancer survivors go into debt, and 3 percent file for bankruptcy.” The article cited a 2012 survey using data from 4,719 cancer survivors between 18 and 64, and one-third had gone into debt and in more than half of those cases, the debt was above $10,000. The article indicated that three percent had filed for bankruptcy.

For all of those who believe that everything is fine and the system doesn’t need any intervention, I have a question to ask: have you ever been sick? Do you know anyone who has ever been sick or cared about anyone who has ever gone through a major illness?

Cancer is not a punishment. Cancer certainly does not mean you have some moral failing. Both good and bad people become diagnosed with cancer every day. Every day folks who were going about their days had their lives completely upended by this disease: infants, kids, teens, adults or the elderly. Anyone. Cancer does not discriminate.

This country has some pretty messed up priorities where we can people that they should lose everything they have and/or choose between medication or food (the modern day’s Sophie’s Choice, I guess?). Politicians and those right-leaning folks screaming how they don’t want the government involved in healthcare don’t seem to care or mind when their fellow citizens lose everything while insurance companies and drug companies make profits left and right.

Profits over people, huh?

How is this right? Please, someone tell me how any of this is right because I honestly do not understand.

The Affordable Care Act

When I was six months old, I had three benign tumors removed from my body. According to my dad, I had one on the top of my head, on my back and in my groin.  Before I could even crawl or walk, I became someone with a pre-existing condition.   During my senior year of college, I had a benign tumor removed from my right breast. Before I even graduated college, I had established a pre-existing condition for tumors in my breast.

When I graduated college, I didn’t have a job lined up and worked part-time jobs in retail. My dad kept me on his insurance for as long as he could, and when I had to get off his insurance, I had catastrophe only coverage until I got a job in my field.

For as long as I could remember, my dad stressed to me that I always needed insurance because if I had a gap, I would have an impossible time getting coverage again because of pre-existing conditions.  Since my body had the tendency to form tumors for some unknown reason. I had a pre-existing condition since I was six months old.

I have wanted to go back to school for my master’s degree, but could never figure out a way to do so while maintaining health insurance.  I could not risk having a gap in my coverage. While I did not quite understanding the intricacies in health care insurance in my early- and mid-twenties, all I knew was that I could not have a gap.  I stayed at jobs that I didn’t want to because I needed healthcare insurance coverage.

Since 2010, I have undergone more medical tests and surgeries than most have in their entire lives. I have had the following: a lumpectomy, seven rounds of chemotherapy, full thyroidectomy, 35 rounds of radiation, a laparoscopic procedure to drain an ovarian cyst, a double mastectomy, four months of reconstruction, a tissue expander exchange surgery, a superficial cyst removed from my right fake boob, and a major surgery to remove my right ovary and the aforementioned cyst that grew back and doubled in size.  In addition to all of these procedures and surgeries, I have had countless doctor’s office visits and blood draws, as well as a handful of CT scans and MRIs.

My first chemotherapy – the least expensive option and the one all insurance companies insist that doctors try first – ended with me going into anaphylaxis. The remaining six chemotherapy treatments were the most expensive ones – Abraxane

I. Am. Expensive. To. Keep. Alive.

I never asked for this. I don’t revel in this, and I would trade this body of mine for one that does not do this. Seriously, I would trade in a heartbeat. My body forms cysts and tumors – sometimes malignant but the majority have been benign – without warning or explanation. Maybe there’s a reason or condition that I have, but as of right now, I don’t know.

A refresher on the ACA and the protections it was designed to provide:

This protection gave me the most peace of mind:

“Insurance companies can’t set a dollar limit on what they spend on essential health benefits for your care during the entire time you’re enrolled in that plan.”

My insurance company cannot drop me for being too expensive. I can focus on being healthy first and foremost, not worried that the next surgery will cost me my health insurance.

This protection gave me comfort and relief:

“Under current law, health insurance companies can’t refuse to cover you or charge you more just because you have a ‘pre-existing condition’ — that is, a health problem you had before the date that new health coverage starts.”

I am not married, and I own a home. Heaven forbid I lose my job (please God, do not let this happen), I am on my own. Sometimes events happen which are out of our control. Illness and chronic conditions are not punishments for misdeeds or moral failures. Sometimes bad things happen for no reason, and that is terrifying to admit and understand. I don’t know when the next cyst or tumor is going to come. I would like to think I am done with them but history has demonstrated that won’t be the case.

If I lose my insurance but still need a surgery or treatment to get myself back to good health, I either have two options: bankruptcy caused by medical bills or just not having the surgery or treatment because I don’t have a literal money tree in my backyard.  Men and women in the U.S. are forced into bankruptcy at an alarmingly frequent rate because of medical bills.

With or without insurance, being sick is costly. Co-pays, missed time from work, gas to doctor’s appointments, parking fees, deductibles, medication, so on.

When I come across comments online from other Americans who don’t know that “Obamacare” is also the same as the ACA, or believe that people without healthcare are just lazy folks who don’t work hard enough, part of my soul dies a little. Good health is a gift, not a guarantee.  I have yet to come across someone bitching about “Obamacare” who is lower- and middle-class and have gone through extreme medical trauma and hardship.

Despite having scars from literally the top of my head to my knees, I became a marathoner. I have finished 10 half marathons, one marathon, two 10-mile races, and numerous 10K and 5K races, well as other distances.

You know what made all of those races possible?  Answer: access to healthcare, which includes surgeries, medication, chemotherapy, radiation, scans, whatever.  If I have the ability, then I am always going to strive to be a runner first.  I know I’m always going to be the one who has “the problems,” or who seen as “sick all the time.” I don’t want to be that person. I want to be a runner who kicks ass and takes name.

If the politicians allow lifetime caps and pre-existing conditions to come back, then my dreams of running marathons in cities all over the country or world will disappear.  I want to live a life full of purpose, goals and accomplishments. If my insurance company is free to impose lifetime bans or drop coverage for me for whatever reason they want, then I will be the person that “Obamacare” opponents hate: someone on Medicaid.

Damned if you do, damned if you don’t.

We Need to do Better

Most readers of Get Up Swinging know that my number one priority to my breast cancer is more money for research for metastatic breast cancer. You know, I do it for my mom, who died at age of 40, only two months shy of her 41st birthday. I’ve also had breast cancer myself, and I live with the knowledge that my disease can have a metastatic recurrence any time for the rest of my life.

All of that’s true, but there’s more to why I do what I do.

For my friends who have metastatic breast cancer and young children, I know what it’s like to be that young child. I see the pictures they post, and when I see the early elementary school children, my heart breaks. I see myself in those faces. When you’re a kid, you know something sad and serious is happening but you can’t quite understand actually what is going on with the adults.

I read about my friends’ anguish about just wanting to see their children grow up. I think to myself, “These are the thoughts my mother had as she endured treatment after treatment with three children in elementary school.” I can understand their fear in a way because I am frightened of a recurrence and what is my greatest source of anxiety, is their day to day life.

I know what I’m about to write is going to scare the almighty shit out of my metser friends: I do not have any solid memories of her. I would describe them more like snippets of a dream I’m trying to remember but cannot with any certainty. Years ago, my dad played a recording of her and he had to tell me which voice was hers. I look like her and have the same disease, but I don’t remember her. She’s more a presence and not really a reality. I imagine this was something she feared and did not want to happen, but it did.

There’s a mom-sized hole in my heart that appeared when she died. It’ll never go away. I can fill it up with other sources of love and happiness but it’ll never quite fill the hole left behind by her death. It certainly shaped the person I am now, and I often find myself guided by the thought, “What would Mom would have done?” I also find asking myself when I’m blogging or sending out tweets advocating for change, “I wonder if she would be proud of me.”

When my friends pray for their current treatment to hold out for as long as possible, I think about my high school and college graduations, which she did not see. She did not even see me reach middle school. Those living with metastatic breast cancer want to see their milestones. Research into better treatments is the only way these moms and dads can see the milestones, big or small, happen. Metastatic cancer is smart and cunning, and it’s constantly thinking of ways to make it so the current line of treatment fails for the patient.

Holley Kitchen had a goal, which was to see her youngest son turn 5.  She missed her goal by two days.  Two young boys will be growing up without their mother, and that’s something I know all too well.  Please read Susanne’s blog because her perspective drives home the frustration.

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Credit: Metathriving.com

To my metser friends with children, please know that your children’s memories may fade to what mine are now, but know that they will never forget the love. I don’t remember my mom, but I know she loved me and my brothers more than anything. Your children will know that you did not go willingly and understand the ugly reality of cancer. Please please, do not avoid being in pictures with them if you can help it. You may think you look awful but your children will only see you. Trust me.

I know what it’s like to have cancer and live with the fear of recurrence. I also know what it’s like to grow up without your mother and have no solid memories of her. I would never wish either on my enemy.

That’s why we need to do better. Donate to Metavivor. Don’t buy pink ribbon products. Listen to those who have the most to lose because I promise you, they are the ones telling the truth, not the ones who want to sell tchotchkes.

Why I Am Still Anti-Komen

 

In early 2014, I wrote a blog post about why I was against breast cancer juggernaut Susan G. Komen Foundation.  It was shared, pinned, tweeted, discussed.  While the blog post was shared and liked by many, I don’t know the extent of the reputation hit I may have inflicted upon Nancy & Co.  I truly hope I inspired many to donate their money to much more honorable charities.

Well, now I am here to report on where Get Up Swinging and Susan G. Komen still stand.  To the surprise of no one, I am very much still anti-Komen, and I do not see that changing any time soon (please see below for a list of organizations doing amazing work).

I do not plan to re-hash all the same reasons I have already cited.  That’s the beauty of Nancy & Co: they keep giving us new and improved reasons to despise them and what they are doing to stand in the way of real change.  Today would have been my mother’s 69th birthday.  She died at the age of 40 from metastatic breast cancer.

Nancy, Nancy, Nancy

In a November 5, 2015 letter to the New York Times, my favorite former CEO was not happy about a very well-reasoned article, “A Growing Disenchantment With October ‘Pinkification,’”also published in the New York Times, which had valid points of views from those not wearing Pink Ribbon glasses.  Did Nancy listen to her critics and go, “Man, we’ve really divided the community for which we are trying to help”  Did she do any self-reflection and think, “I need to turn my focus back on the promise I made Susie.”

Of course not. Nancy didn’t address any of these real pressing issues currently happening in the breast cancer community.    Instead, all she did was regurgitate Komen’s history and ends her op-ed with the tone-deaf statement: “Pink Ribbons matter!”

The Pink Ribbon has enabled Komen to stage Races for the Cure with more than 1.5 million participants, partnerships in more than 150 countries and the engagement of more than 100,000 volunteers.

Oh boy, Nancy.  This is another example of why I think you are an evil woman.  You don’t get it, and you don’t want to get it.   What about those who are on their fifth line of treatment or waiting to get into a clinical trial in hopes for another six months with their families?  All you care about is your money-making Pink ribbon empire and your meaningless ribbon, aka the symbol of your life’s wealth.

There was one point in the article, and it’s an excellent point and one that you would think would make The Breast Cancer Charity go, “Holy shit, we seriously have to fix this!”

For all the awareness, they note, breast cancer incidence has been nearly flat and there still is no cure for women whose cancer has spread beyond the breast to other organs, like the liver or bones.

So, congratulations on patting yourself for your ability to rally others around a cause that has affected so many people.  But what about the 40,000 dying every year, a mortality rate that hasn’t changed in two decades?

No, Nancy.  Pink ribbons do not matter.  The lives of the 40,000+ dying of metastatic breast cancer each year in the U.S. matter.  Their partners, their children – the lives of all who have been diagnosed and will be diagnosed – they matter.  They should be the priority  and Nancy & Co. act as if these valid complaints are mere annoyances, like we are a bunch of Internet loud mouths.   The average lifespan of someone diagnosed with stage 4 is 33 months, and a pink ribbon isn’t going to change that.   We need change.  Now.

2015 marks the first time Komen lets you make a donation to metastatic breast cancer research

This past October marked the first time Komen allowed its donors to allocate where they want their money to go, and research toward metastatic breast cancer was one of the options.  It’s 2015, and this is the first time they have done this.  Why has it taken so long?  Could it be that the Komen push-back from all of us Internet loud mouths made some Komen folks realize that their priorities are jacked up?

However, this option only came about mid-October, and it was initially advertised as an option only available until the end of October!  What the deuce?  Did I miss the memo that metastatic breast cancer goes away when the calendar reaches November 1?

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I guess they listened to others also going, “Um, what?  This is only an option until October 31?” and changed their minds.  If you make a donation to Komen, you can still choose your donation to go toward metastatic breast cancer research.

Of course, though, this is still Komen, and they will always find a way to take your money, as pointed out by Bravery, Grace and Badassery.

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Does Komen really need that much financial help for its administrative costs that it still insists on taking funds for metastatic breast cancer research?  Get the hell out with this nonsense.

This organization has been claiming to be in this “for the cure” for the previous three decades.  Shouldn’t research for metastatic breast cancer be the primary focus so many, many years ago?  The only type of breast cancer that kills is metastatic breast cancer.

Komen likes misleading statistics

During Pinktober, the Susan G. Komen Foundation posted a pastel, feminine looking graphic with words and numbers together, which would lead you to believe that we are WINNING this fight on breast cancer:

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Ugh.   Ugh.  Ugh some more.

The five-year statistic is bull, it’s just plain bull.  It’s a misleading statement for a national organization to make, and all it does is make the general public LESS aware about breast cancer.  I’m sure all the Komen supporters saw that graphic on Facebook and said, “Yes, we are winning!  Well done, everyone.  Well done.”

Folks, if you’re reading this, please know that you can still have a breast cancer recurrence after five years.  The cancer doesn’t just peace out once it’s been five years since your initial diagnosis.  We have been led to believe that five years is this magical number and you showed cancer who is boss.  Realistically, though, you can recur 5, 10 or even 15 years after your initial diagnosis, so you can still die from breast cancer but be counted in this bogus statistic.  Theoretically, someone can have an early stage diagnosis in 2012 and have a metastatic recurrence in late 2015.  If they are still alive in 2017, then they are counted in that statistic, even if they die on January 1, 2018.     Do we tell them as they are dying, “Way to go, Jane, you made it past five years since your initial diagnosis.  You are a winner.”

Komen, for the love of Pete, quit sending misleading statements out to the general public that we are winning when the mortality rate hasn’t changed in the previous two decades.

Check out my friend, AnneMarie, crunching some numbers.

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I couldn’t agree with this any more.

Frankly, I’m tired of breast cancer being portrayed as the feel good cancer and being held up as a shining example for early detection which works sometimes or even most times but not all the time and that part of the messaging is conveniently left of of every discussion about early detection.  It’s buzzkill.  It detracts from the message that mammograms are unilaterally helping save lives.  Mammograms are detecting cancer earlier and earlier thanks to constant improvements being made in imaging devices but early detection is just that.  Early Detection.  And early detection is not a guarantee.

Komen and its representatives treat metastatic breast cancer patients like a nuisance

Beth Caldwell, who writes over at the Cult of Perfect Motherhood, recently attended the San Antonio Breast Cancer symposium.  She wrote about her encounter with a member of Komen’s Scientific Advisory Board:

This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.

This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.

Holley Kitchen, whose direct and moving video went viral, also had an encounter with a Susan. G. Komen foundation representative:

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Susan G. Komen Foundation has proven time and time again that it cares about money and donation$, and the lives of those with metastatic breast cancer are secondary.  Metastatic breast cancer is what killed Susan G. Komen, a real woman who died way too young.  Yet when those with stage 4 have stood up to the organization and its representatives, they are told time and time again that maybe Komen will care if they begin raising money for them.

So what’s the point of my anti-Komen diatribes?

Finally, just because I think Komen is an awful organization that has gone way off tracks, it does NOT mean I don’t want you to stop donating toward breast cancer research and programs.  There are so many wonderful organizations that have a mission statement, and (gasp) they are sticking to it.

Why do I keep hating on Nancy & Co.?  Welp, I want to highlight organizations that are awesome and making a big roar out there.  Please consider throwing your support behind these organizations.

  • Metavivor – 100 percent of your donations goes toward researching metastatic breast cancer, and they raise money by selling merchandise.
  • The IBC Network – Did you know that breast cancer can occur without presenting as a lump? Inflammatory Breast Cancer is mostly detected when the cancer is late stage or tragically, stage 4.  It’s an aggressive cancer, and it’s definitely not one that’s ever discussed during our annual Pinktober.  Terry Arnold over at IBC Network is a tireless advocate.
  • Met Up – This is an activist group, which was co-founded by women who have metastatic breast cancer. Read their goals, get involved.  Help their voices be heard.  You cannot call yourself a true breast cancer advocate if you only want to help the “survivors.”

We have so much work that needs to be done.  Recently, the New York Times reported on October 29, 2015 that the incidence rate between white women and African-American women are now equal for the first time.  Previously, women of color were less likely to be diagnosed with breast cancer, but more likely to die from the disease.  Now that the incidence rate is equal, well, does that seem like good news for women of color?  Not in the slightest.

Over all, a black woman given a breast cancer diagnosis is 42 percent more likely to die from the disease than a white woman with breast cancer. An analysis of breast cancer mortality trends in 41 of the largest cities in the United States, published last year in Cancer Epidemiology, found that in some cities the risk is even greater. In Los Angeles, a black woman with breast cancer is about 70 percent more likely to die from the disease than a white woman is. In Memphis, black women face more than double the risk. Black women also are less likely than white women are to be given a diagnosis of early stage disease, and more likely to be given a diagnosis with later stage, and less treatable, tumors, according to the report.

Don’t give up on the cause, even though Nancy & Co. have lost their way.

Pinktober is coming

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In matter of days, October will be upon us once again, and everywhere you look will be draped in pink ribbons and emblazoned with such words, like, “Brave!” “Survivor!” “Sisterhood!” “Strength!”  When you turn on daytime morning television, the networks will be featuring early-stage survivors and once again, ignoring those living and dying from metastatic breast cancer.   If you’re a fan of professional football, the NFL will be featuring bright, attention-grabbing pink gloves, shoes, and T-shirts, all for breast cancer awareness month (never mind the fact that October is domestic violence awareness month, and the NFL should seriously focus their attention on that problem).  Also, the NFL donates “shockingly” little to breast cancer causes anyway.

Friends, if you are like me and recoil at the pink tchotchkes and offensive T-shirts with puns about breasts, then come sit next to me.  We can plug our ears, close our eyes and sing happy songs to drown out all the noise because that’s what this is: noise.

However, if finding a corner to hide from the Pink Ribbon Biz Business until November isn’t feasible due to family, children, jobs, that sort of thing, then there are ways to survive with your sanity intact. Here are some ways you can fight back against Pink Ribbon Crap Spewing Machine, and most importantly, help those with breast cancer who need your support.

  • Research > awareness

By the hammer of Thor, the word awareness has lost all meaning.  It really has.  I would love to find that one person residing in the U.S. who isn’t aware of the existence of breast cancer and ask them where they have been for the past two or three decades.  A cave?  A cabin in the woods?  The fact of the matter is that we are all aware.  In fact, we are all so aware that the general public doesn’t know much about breast cancer except for its existence.  With all the T-shirts, coffee mugs, bumper stickers and the thousands of other breast cancer-related products doesn’t teach anybody anything beyond the fact that breast cancer exists.

Did you know that approximately 40,000 die from metastatic breast cancer each year?  My mom died from this disease in 1987 at the age of 40, so I have been aware of the fact that breast cancer is deadly since I was only 7 years old.

Did you know that men get breast cancer, too?

Did you know that breast cancer can present with a lump and if so, do you know the warning signs to look out for?

Did you know there are multiple subtypes of breast cancer, such as estrogen positive, Her2+ or triple negative breast cancer?

Did you know that a strong family history and/or genetic makes up small number of breast cancer diagnosis?  (American Cancer Society estimates that number to be approximately 5 to 10 percent.)

If you have had a friend or family member go through or die from breast cancer and you want to help in a meaningful way, then support organizations who are researching breast cancer.  Stand Up to Cancer, and the Dr. Susan Love Research Foundation are pretty awesome organizations.  Personally, I support the organization Metavivor since 100 percent of their donations go toward research grants.  I know I have made it very clear why I abhor the Susan G. Komen foundation, which leads me to my next point…..

  • Think before you pink

This is just a great general rule to live by in a world saturated with pink products.  If you are thinking of purchasing a product that says that X amount of proceeds go to X charity, then do a little research before buying the product.   Questions to ask: is this a charity I feel comfortable receiving my money, or would I be better off just making a donation myself and writing off a tax deduction?   You can research non-profit organizations on Charity Navigator.

Susan G. Komen receives 2 out of 4 stars, and as of September 27, 2015, it has an overall score of 78.97.  It scored 70.53 percent in overall financial and 96 percent in accountability and transparency.  Judith Solerno, CEO, received $209,120 in compensation, and Nancy G. Brinker received $480,784 in compensation (more than twice her CEO’s salary?).

Susan Love Research Foundation receives 3 out of 4 stars, and as of the same date, it has an oval score of 85.07.  The foundation scored 80.09 percent in overall financial and 93 percent in accountability and transparency.  Susan Love, president of the organization, received $225,000 in compensation.

Another important question to ask, according to the Breast Cancer Action organization:

What is the company doing to ensure that its products are not contributing to the breast cancer epidemic?

Please see Breast Cancer Action’s website for examples of more than questionable campaigns created in the name of breast cancer awareness.

  • Breast cancer is not a game – it’s a serious, deadly disease.

Weeks ago, it was brought to my attention that a new breast cancer status awareness game began.  I may have sprained an eyeball from rolling it so hard at the stupidity of it this year, something about leprechauns or speeding tickets.  I can’t keep up, nor do I want to keep up with this.  Breast cancer is NOT a game, or a reason to take off your bra for… some reason that still doesn’t make sense to me.

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Whenever I have seen this “game,” I have this conversation play out in my mind:

Me: Friend, I saw that you posted a weird status about getting out of a traffic ticket with a boob, and I know what you’re doing.  Stahp.  Just stahp.

Friend: But… I’m raising awareness for breast cancer?  Isn’t that something you want?

Me: You haven’t raised awareness for anything except that you fall for stupid games and feel compelled to pass it along to unsuspecting folks on your friends list.  You are literally helping nobody by this status.

Friend: You’re an asshole, Lara.

Me: Why that may be true, it doesn’t take away from the fact that you are literally helping nobody by this.  Nobody.  You haven’t shared any facts, links to any good blogs, organizations or call to actions.  Literally nobody has come out of this the wiser.

Friend: [Unfriends Lara]

… and scene.

We can do  this, Get Up Swinging friends.  We can get through this Pinktober, and we will live to tell the tale.

How hard is it to tell the truth?

Not too long ago, a commercial for a local healthcare system in Western Pennsylvania caught my attention for the “statistic” it features at the very beginning.  The commercial is for the healthcare system’s 3D mammography services.

As soon as I read that “99 percent of women will survive breast cancer if detected early,” I shouted, “YOU’RE LYING.”  Unsurprisingly, the source of this so-called statistic is the Susan G. Komen foundation, though I have no doubt that Excela took the statistic out of context to suit its own purposes.  Excela Health wants to get as many women into the doors for its Walk in Wednesdays, and what better way than to keep perpetuating the myth that mammogram saves lives or early detection saves lives.  Who cares if it completely disregards facts, science or context, right?

Let me count the ways in which the commercial is as wrong as Donald Trump as president (seriously, dude is a clown).

1.) Those diagnosed with early stage breast cancer may go on to become metastatic, though the exact number is unknown. 

The Metastatic Breast Cancer Network estimates that 20 to 30 percent of those diagnosed with early stage breast cancer go on to become metastatic.  (Source)  We don’t know this statistic for certain because of this problem, as stated in Laurie Becklund’s op-ed “As I lay dying”:

I say “estimated” because no one is required to report a metastatic diagnosis. Death certificates normally report symptoms such as “respiratory failure,” not the actual disease. We are literally uncounted.

We now know that breast cancer is not one disease. What works for one person might not for another: There is no one “cure.” We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them [emphasis mine].

 

How can any healthcare network make the assertion that 99 percent of women will survive if their breast cancer is diagnosed given the lack of information?  They can’t, and they should not.  It’s irresponsible for any health care provider to even give the impression that 99 percent of women will survive breast cancer if diagnosed early, especially without giving a time frame (context!).   Ms. Becklund died of metastatic breast cancer (source).

2.)  Excela Health is perpetuating the myth that mammograms save lives.   For years, there has been so much controversy regarding the effectiveness of mammograms.  Do they save lives, or have they contributed to the over-diagnosis of breast cancer?

Back in 2009,  the U.S. Preventative Services Task Force recommended that mammograms should begin at 50, instead of 50, and should occur every two years, instead of every year.

A  September 23, 2013 CBSNews.com article reported: 

A new study shows that women between the ages of 50 to 74 that get mammography screenings every two years may be at no more risk for advanced-stage breast cancer and at a lower risk for false positives, than those who get tested annually.

The results, which were published on March 18 in JAMA Internal Medicine, follow the 2009 recommendation by the U.S. Preventive Services Task Force that advocated for biennial mammography for women in this age group instead of the previous suggestion of getting screened every one to two years.

However, the study authors pointed out that the original recommendations only looked at age as a factor for influencing breast cancer risk. This new study factored in age, breast density and postmenopausal use of hormone therapy (HT).

According to a February 12, 2014 CBSNews.com item:

A controversial new study has found that annual mammograms may not help reduce breast cancer deaths and may increase the number of women unnecessarily getting treated for breast cancer.  The Canadian study tracked almost 90,000 women for 25 years, and found that having an annual mammogram between the ages of 40 to 59 did not lower the chance of dying from breast cancer more than having a physical examination.

The study, which was published in BMJ on Feb. 11, disconcertingly showed that 22 percent of invasive breast cancers were overdiagnosed by mammography, meaning the tumors would usually have been too small to cause symptoms or become life-threatening.

If different task forces and non-profit agencies cannot even come to the same conclusion regarding mammography, that speaks volumes.    Some might argue that, “Well, hey, the mortality rate is declining, so of course mammograms save lives?”  Well, are mammograms saving lives or is targeted therapies and better treatment contributing to this (source)?

3.) Without context, the 99 percent statistic is just misleading.

The American Cancer Society’s 2013-2014 Breast Cancer Facts & Figures (found here) states:

Based on the most recent data, relative survival rates [i.e., an estimate of the percentage of patients who will survive for a given period of time after a cancer diagnosis] for women diagnosed with breast cancer are: • 89% at 5 years after diagnosis • 83% after 10 years • 78% after 15 years

Relative survival rates should be interpreted with caution. First, they do not predict individual prognosis because many patient and tumor characteristics that influence breast cancer survival are not taken into account. Second, long-term survival rates are based on the experience of women treated many years ago and do not reflect the most recent improvements in early detection or treatment.

The same Facts & Figures document also states that five-year relative survival is also lower among women diagnosed with breast cancer before the age of 40 (yay…. me).   “This may be due to tumors diagnosed at younger ages being more aggressive and/or less responsive to treatment.”  You can’t make a blanket statement about a disease that is so complex.  Cancer doesn’t work that way, and breast cancer certainly does not work that way.  Breast cancer is not just one disease – it’s many.

4.) How dare anyone, especially a healthcare system provider, imply, insinuate or just outright state that those with metastatic disease weren’t proactive in their health or didn’t do all that they can to prevent a metastatic breast cancer diagnosis.   

An estimated 6% to 10% are diagnosed stage IV as their initial diagnosis (source).  What does that mean?  The remaining percentage were diagnosed with breast cancer (stage 0 through III) at some point prior to a metastatic recurrence.  Believe me, they were getting routine screenings (such as mammograms, MRIs and/or PET scans) from their oncologists or other healthcare provider.   After their initial diagnosis, those with estrogen (ER) + breast cancer take some form of hormone suppression medication (such as Tamoxifen, Arimidex and Zoladex).

Lisa B. Adams, who died in March 2015 from metastatic breast cancer, did absolutely everything to reduce her risk of a breast cancer recurrence after she was diagnosed with stage II breast cancer in December 2006.  She wrote on her website she had the following done: double mastectomy, chemotherapy (4 rounds of Adriamycin and Cytoxan two weeks apart followed by 4 rounds of Taxol two weeks apart), Zoladex injections to combat her ER+, PR+ breast cancer and later had a salpingo-oophorectomy (removal of my Fallopian tubes and ovaries) in December 2008.   She received a metastatic breast cancer diagnosis in 2012.

She caught it early!  She.  Caught.  It.  Early.   Many women (and men, of course) caught their breast cancer early, and later died of the disease, and that number is not 1 percent.

Just because someone has been diagnosed with stage IV breast cancer, it certainly does not mean that they did not do everything to prevent such a diagnosis.  Some tumors are more aggressive than others, and can be fast-growing.  Inflammatory breast cancer does not present with a lump.  It is quite possible to have a clean mammogram and then three months later, have a later stage breast cancer diagnosis.  To say otherwise, is downright offensive to those with stage IV breast cancer.

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Excela Health isn’t alone in this ever-present pink-washing cycle, perpetuating myth after myth.  However, given that they are an actual healthcare system, then they should be held to a higher standard.  I would love to think that the hospital I’m going to for my healthcare isn’t producing commercials with such garbage like this.  Breast cancer is horrible enough without adding myths and falsehoods on top of it.  How hard is it to tell the truth?

 

Please, people, stop faking cancer

Will someone explain to me how anyone with a conscience could fake having cancer, especially terminal cancer? I cannot wrap my brain around this, and I’m pretty sure if this keeps happening, I’m going to have a rage stroke. “Here lies Lara. This latest cancer hoax was too much.”

Canadian Ashley Anne Kirilow admitted “she faked cancer, ran a bogus charity and collected thousands of dollars from hundreds of people,” according to an August 6, 2010 article in The Toronto Star.

ABC7.com reported on November 5, 2014 how this woman was charged for “allegedly scamming dozens of Facebook friends with a fake cancer diagnosis.”

Jessica Vega faked having cancer in order to have her “dream wedding,” according to an April 11, 2012 CBSNews.com article.

A March 15, 2015 Buzzfeed piece reported that Kelly Johanneson was arrested after she allegedly “faked having [terminal breast] cancer and then stole thousands of dollars that individuals in her community donated to her.”

According to a September 26, 2012 NBC News article, Jami Lynn Toler faked having cancer to raise money for breast implants.

Lori Stilley claimed to have terminal bladder cancer, and according to a May 2013 Patch.com article, “She even engineered a wedding, financed by donations, by telling friends she wanted to marry her boyfriend before she died.”  Ms. Stilley’s sister was the one who turned her in to the authorities.

The list seriously goes on and on. I’m not kidding — it really does. Also, I never understood those who faked a terminal diagnosis. What were they going to say when they didn’t, um, die? Were they going to pretend it never happened?

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The most recent admitted cancer faker is Belle Gibson. An April 22, 2015 Guardian  article reported that Ms. Gibson, “who built an online community and sold a recipe book off the back of claims she cured terminal brain cancer through diet and lifestyle alone, has admitted she never had cancer.”

Publications have quoted Ms. Gibson as saying, “I don’t want forgiveness. I just think [speaking out] was the responsible thing to do. Above anything, I would like people to say, ‘OK, she’s human.'”

Oh no. No. Hell nah. This is not a situation where you can go, “my bad,” and expect everything will be okay.

Most humans do not perpetuate a major hoax. Most humans don’t attempt to build a clean eating empire based on a lie. Most humans do not broadcast incredulous claims about reversing a terminal cancer diagnosis with diet alone.

We have no idea how many terminal men and women altered their treatment plans based on Ms. Gibson’s fabrications. The forthcoming Australian Women’s Weekly interview with Ms. Gibson indicated she had “millions of followers.” Those with terminal cancer didn’t need lies and false hope, which is what she gave them. I pray with every ounce of my icy cold heart that someone dying of cancer didn’t think to themselves before their death they didn’t try enough.

If you believe that baking soda cures cancer and then are diagnosed with cancer, then do you. Go nuts, and let me know how it works out for you. I believed in conventional treatments and using alternative methods to alleviate symptoms caused by treatment. Do I know what’s the best route to take if you have cancer? Of course not, because I know enough about cancer to understand I don’t know jack about cancer.

Please, don’t believe everything you read and if it seems too good to be true, odds are that it is. “Watch out for false prophets. They come to you in sheep’s clothing, but inwardly they are ferocious wolves.” For example, a November 2014 News.com.au item included a lengthy, glowing profile of Ms. Gibson, including this gem: “Fame holds no interest for Gibson, which is perhaps unsurprising; she has more important things to think about.” [Oh really?] She commented in the piece, “I believe that people are here to be teachers. And I know that I defied so many universal and life rules for a reason.”

Seriously.

I would never ever wish cancer upon anyone. Never. It’s a horrible disease, and nobody deserves this. However, in cases like Ms. Gibson, I wouldn’t feel at all sad if she was diagnosed with cancer years from now.

Be careful what you wish for. Karma is a bitch.