Big Pharma, anyone???

****Caution: There may be Foul Language Ahead****

So, I have been seeing much discussion lately about Big Pharma aka Pharmaceutical companies that make all the “wonderful” medications, vaccines, chemo drugs that Americans need to survive….

Anyways….the discussion of late has been the increase of the EpiPen.  The EpiPen is needed for individuals who are having an anaphylaxis event….usually due to an allergy to bees, peanuts, etc..

The price of these said EpiPens have increased to over $600 for two….a cost that most Americans cannot easily afford.  So what do they do?? I hope that the majority of us believe that LIFE is worth more than $600.

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The thing is…..this price gouging of life saving medications is nothing new.  Last year there was the Martin Shkreli price gouging of Daraprim (live saving medication for Malaria) or J Michael Pearson’s price gouging of Syprine (for Wilson’s Disease) went from a copay of $700/yr to over $10,000/yr.

What IS new this time??? The CEO of Mylan Pharmaceuticals is Heather Bresch.  Ms Bresch is the daughter of Senator Joe Manchin of West Virginia.  Hmmmm….sounds a bit scandalous if you ask me.  AND….the EpiPen affects more people.  That, in turn makes a louder outcry when insane gouging of life saving drugs occurs.  Poor choice Ms Bresch.  You have officially pissed off millions of Americans.

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And the response from Mylan Pharma is that the increase of the EpiPen listing price is necessary for the company to recoup it’s investment in acquiring this drug.  Huh??  Here’s an idea…..that most business minded people can understand….you make your business cuts in other areas.  How about the lofty salary that you make??  (Heather Bresch’s income for 2015 was $25.82 million dollars!!!)

Quite honestly, the best shifting of blame that I have heard from Big Pharma is that the insurance companies have decreased the amounts that they cover, therefore the patients/customers must pay more at the Pharmacy counter.  Well shit!  Someone has to pay for those lofty annual CEO salaries…..might as well be the patient who needs the med, right?????

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So, why do I give a shit about any of this? I have seen and felt the impact of costly life saving medications being too expensive.  Three years ago we battled with our insurance company to get a very costly chemotherapy med approved for Zayla.  It was excruciating the amount of time, effort and tears that I endured trying to get this medication.  Today?? I am angry.  Angry that NOTHING has changed.  In fact, things have gotten worse.  Life saving medications should not be priced to the point that people cannot afford them.  Period.

Healthcare and medications should be made available to everyone.  Period.

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Why are we not outraged that CEO’s make OBSCENE amounts of money???  Are the CEO’s making the drugs??? Ha! Don’t think so.  You have scientists and doctors that painstakingly spend countless hours researching to find better treatments.  Yet, we are all at the mercy of Big Pharma AND our government to get the cures we need.

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Something needs to change.

Here’s a little glimpse of reality…..Big Pharma CEO’s salaries:

  1. Len Schleifer, Regeneron, $41.97 million dollars
  2. Jeffrey Leiden, Vertex Pharm, $36.64 million dollars
  3. Brent Saunders, Allergan, $36.61 million dollars
  4. Martine Rothblatt, United Therapeutics, $33.21 million dollars
  5. Lamberto Andreotti, Bristol Myers Squibb, $27.06 million dollars
  6. Heather Bresch, Mylan, $25.82 million dollars
  7. Kenneth Frazier, Merck & Co., $25.03 million dollars
  8. Alex Gorsky, Johnson & Johnson, $24.99 million dollars
  9. Robert Hugin, Celgene, $24.24 million dollars
  10. Ian Read, Pfizer, $23.28 million dollars

Total bank for the top 10 is $298.85 million dollars last year.  That is INSANE!!!

So, go ahead and tell me….how do we not blame Big Pharma??

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If my daughter’s brain cancer would have been more profitable one of these Big Pharma companies MAY have researched more and perhaps found a cure.  But you see…..childhood cancer is NOT profitable.  There just isn’t enough sick kids.  Not enough deaths.  Instead?  We will keep the revolving door going…..so these big Pharma companies can get there payday.  Because that is what matters in America, right??? The Almighty dollar.

Screw you Big Pharma.

Miss you baby girl.  Every day.  Every minute.

Here’s the thing…..

Here’s the thing…..life is about choices. Really. It is.

Most days, I choose to get out of bed and play off this incredible cruel joke of living without my daughter.  I choose to.  Nobody forces me to.  I just do it.

Some days I choose to let miserable people invade my thoughts.  Seems silly, why would anyone choose to let miserable people invade their thoughts?? Well, that’s what you are doing when you let bullshit into your life.

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So today?? I am CHOOSING to not let my thoughts and day be invaded by things that don’t matter.  Things that are NOT in my control.  Because the only thing that you can control is yourself and your choices. Some people do not have very good self control…..I have been known to occasionally be one of those people. But, even when I am at my worst….I still have choices.  Always have.

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So what does all this mean really??? I don’t want to be the “victim” of childhood cancer. It has already stole so much from me and my family.  I don’t want to be just another grieving mother who is so hypersensitive to everything around her. Always in a funk.  Often angry. And so very, very sad.

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I want to choose to change my thinking.  Because, whatever is going on in my mind, is what I am attracting to myself.  Simple law of attraction. I want to live a life of purpose.  Make a difference.  Have my life make a difference…..to someone.  Anyone really.  Stop doubting…..have more faith.

 

Live more like Zay.  That’s it.  I want to be more like Zay.

Miss you baby girl.

 

The next chapter…..

on Thursday, I had a meeting for Zayla’s IEP for high school. High school, YIKES!! All of the support staff the last two years have been amazing. Zayla’s case manager last year was Roz. Zay was heart broken to leave her, BUT this years case manager, Laurie, WAS amazing as well….these people become such an integral part of her school life. They see all of her frustrations with her new learning disabilities and help her “try” to be her best. The meeting went really well, and we have some great ideas to help Zay get the best experience she can from high school.

Today, I want to share a little bit.  Share how childhood cancer, or in our new world, teen cancer, has changed our lives.

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Time. Time is a funny thing.  I still get excited and wish for certain events (vacations, concerts, parties, etc..), BUT….in a different way.  I often feel myself wishing for time to slooooow down, please.  Nothing new to most people, I’m sure.  I feel as if “borrowed time” is around every corner.  When discussing Zayla’s future in high school….it really was hard for me to look that far ahead.  Maybe it is the looming cancer. Always hovering over our thoughts and feelings. It is hurtful. We TRY to not let teen cancer control our lives.  But, let’s be honest.  It often does.

Time can also be peculiar when it comes to treatment and the growing independence of adolescents. When Zayla was much younger and battling cancer, it was actually easier.  Here you have a young child, that relies exclusively on you to make her decisions.  Often life altering and saving.  This time around it is much different.  Although I am beyond words happy to see Zay be the young teenager she is today….it is also followed by letting go.  Letting go of the control.  Sure, this is an issue with ALL teenagers.But, can you imagine letting go of the control when it comes to life saving measures???!?!?! It is hurtful. There are moments in Zayla’s life that she will voice that she is just plain tired and done with “it all”. Really can’t blame her.  We are coming up on two years of fighting brain cancer. *sigh* But it is our job to not only encourage her to be independent, but to also make informed and educated decisions for herself. For now, she is in the fight mode. But who is to say that this won’t change someday??

Change. So many things have changed over the past two years. Hell, really the last 10 years. Some good. Some surprising. And some not so good. I have been reminded in the past several weeks of how I have changed. Fellow cancer mom, Kathy, has voiced her displeasure of how people respond to her daughter’s new battle with a brain tumor. Her words are my words. Frustration with those who have stepped out of our lives. This is nothing new. Seen this the first go around with the leukemia diagnosis. The “know it all” advice….from people who I am sure mean well….but just don’t get it. It is hurtful. It can sometimes be relentless. Friends lost. Friends gained. Wonderful support, followed by loneliness.

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Loneliness is actually perpetual. Brought on by my own fears and disdain. It is hurtful.

And then there is the anger. I find that I am less tolerant of bullshit. Really, who has time for that? I want to surround myself and my sweet fighting girl with positive, supporting and loving people. I am selfish right now. If I don’t feel like participating in an event or with society. Then I don’t. Take it how you may. (Hence the perpetual loneliness). If you see me looking distant or not interested. Sorry, not sorry, I am probably not interested. I have A LOT on mind. If you can’t get that….oh well. I am constantly wavering between absolute HATRED for what my family is going through, to trying to find peace and joy. Don’t tell me that there is a purpose for this. Not sure I will every see that. And it’s hurtful. I mean really…..purpose in pain and misery for a child??!?!??

Last weekend, I had an idiot ask me, “So, what’s the prognosis?” Seriously??!?!? My response to him was my kid is NOT a statistic. Not a number. Perhaps I should have shared with him the percentage of asshole that he is. I didn’t. Must have been a good day. Note to all: Please don’t ask a parent what the prognosis for their child is. It is hurtful.

Yet, despite all the struggles, I still see good.  Zayla gearing up for her 8th grade promotion this Monday night.  She is attending various graduation parties.  I am grateful.  Grateful that she is able to participate in ALL of these things.  Seeing her excited about having bonfires at our house.  Planning and giggling.  For twenty bad things that can be had by this teen cancer…..I can get just one giggle or smile, and my heart melts.  I can still see the sunshine through these dark clouds.

I pray that those around Zayla can have patience and understanding.  And I pray for peace and normalcy for her.

Peace~