My brain is always short-circuiting and yet, I have this amazing recall for certain things. But yes, I'm still here and still quite noisy even if the noise is more in the 3D world than it's been on this space or in the world of twitter. Or, the noise may be in my head, but it's there and I'm still standing. Sometimes, it's quite an effort and it requires the help of more than one person to keep me in a vertical position. I've been on a rocky path.
Months ago, or, more accurately, two years ago, I recalled a blog I read. It was my friend Renn who blogs at the Big C and Me. In her words:
"A virtual graveyard is not what I had in mind when I stepped into the design section of Blogger. But it is a brutal reality of breast cancer."
I can assure you, this blog began as a big joke about my zig zagging brain. I didn't expect it would lead me on a path of advocacy or would provide the means for me to learn about the importance of evidence based medicine. I could never have dreamed it would have taken me to some of the places I've been nor could I envision the number of relationships, solid relationships filled with respect, love, admiration and countless other things, that I've developed with so many people.
Likewise, little could I have known that I would circle back to matters of the brain when I decided it was time to lend my voice to the mental health arena for whatever bit of difference I might make.
Today, however, I once again find myself mourning. Not one, but two young women, each of whom has held a special place in my heart. Ten days ago, Acacia Warwick and Shelli Gibbons died. Yes, breast cancer.
To the ill-intentioned people who decided it would be a good idea to raise awareness about the plight of those with pancreatic cancer using a campaign where a pancreatic cancer patient is saying, "I wish I had breast cancer" I ask, REALLY? I'd like Jada, Acacia and Shelli to speak from their graves.
And then there's Kohl's and Katie Holms and a campaign that surely looks like a deliberate rip off of METAvivor's signature "Elephant in the pink room" campaign. Lori blogged about it along with several others. I'll be watching to see how that plays out. If I need to start a twit storm, I'll let you know.
I will write proper goodbye's to both Acacia and Shelli. My heart is once again shattered. Carolyn wrote a beautiful note about Shelli on her blog. Love for Acacia was shared on the Bradley University website.
I know Acacia nominated me for a WEGO Health award and despite my megaphone mouth, I get a bit embarrassed to be held in such high regard so I never mentioned the nominations. I'm very happy I saved a snapshot of the quotes on the nomination page. I was humbled when I saw them and today, I sit in tears as I look at them.
The good folks at WEGO are providing avenues and opportunities to have our voices included on many levels. I support their efforts. Here is the link to the nomination page. If Acacia took precious time from her shortened life to share her thoughts, I honor her efforts by sharing it here. Thank you, Acacia. I don't think I had the chance to offer a proper thanks in the commotion that has been part of my life over the past several months. And now, it's too late. And that makes me sad.
All that said, I'm thinking 2014 is not off to such a great start and we're already two months in. I'm not sure if it's social media as a whole or it's just my particular part of the planet but I kid you not when I say an exorcism is in order.
It's time for a breath of fresh air. My head is exploding with things and none of it is terribly pleasant.
Love you ALL..... every one of you.
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Wednesday, February 26, 2014
Thursday, February 20, 2014
C'MON @ValueOptions #Mental Illness IS NOT A CHOICE @HealthJoinIn @askAnthem ENOUGH.
I said it was coming and it's here. Another toe into the waters also known as the mental health care system. For today, specifically, it's about managed care and the behavioral health companies that supposedly manage the care. For a great article about the detriment of managed care with issues surrounding mental health, Todd Essig wrote a superb piece for Forbes in August of 2012.
In other words, a stacked deck. In fact, we, the consumers, don't even get a card to hold, except of course, a worthless insurance ID card. For those who recall my recent issues with my medications, this is not about Health Republic. I'm still a fan.
The is about Blue Cross. Or as it's called in NYS, Empire Blue Cross Blue Shield. If I've gotten all of my facts correct, it's all part of Anthem. And if I've gotten the rest of my facts straight as it pertains to mental illness, just like medication management is outsourced, "behavioral health" is also outsourced. It would appear their chosen management company is Value Options.
Let's start with the terminology, shall we? Behavioral health?? Seriously?? I looked up the definition of behavior and all of its forms. Technically, mental illness could be classified as behavior within the broadest terms but to me, behavior is something about which we have a choice, something we might control, something we might learn or unlearn.
It is from that personal framework that I make this statement:
MENTAL ILLNESS IS NOT A BEHAVIORAL HEALTH ISSUE. IT'S A DISEASE OF AN ORGAN. SPECIFICALLY, THE BRAIN.
I challenge anyone to debate the issue. Any day, any where.
And now, the story. My first steps into the world of mental health advocacy.
A thought disorder was diagnosed. Thought disorder sounds so much better than the language currently in use.
Schizophrenia.
Instant stigma.
I'm learning much and I'm learning quickly. I'll spare you the facts and figures. I'll spare you the textbook version of how to achieve the best possible outcome when a person is diagnosed with a thought disorder. I'll simply say that the diagnosis generally follows a psychotic break. A person may be hearing voices or chatter in their head but not all thought disorders involve voices. At the most basic level, schizophrenia, a thought disorder, is a pattern of disorganized thinking. The disorganized thinking is debilitating unless it is properly treated. In some cases, people can go on to pursue careers in law, education, research. In other cases, the stress is too much under which circumstances, a more relaxed career path is necessary. In still other cases, work is simply not possible. (And in those cases, that does not mean, unfulfilled lives. There are other opportunities but that's for another day.)
Here's the thing. This is not a behavior that can be worked on by the individual afflicted with the thought disorder. It requires a team of professionals. Medication management and tweaking of meds is key. CBT and in some cases, even DBT may be used. Group therapy and individual therapy are still another part of the treatment protocol. And here's the other thing, for someone to have any chance at a so-called normal life, this type of care doesn't follow a specific timetable. Every brain is different, the treatment of these diseases is fluid, and it appears every component of the aforementioned care affords the best chance for that so called "normal life." Not one or two. This isn't a Chinese menu.
Unlike cancer, where there is a specific set of NCCN guidelines which, for the most part, are accepted as standard of care and employed in treatment, there's nothing but a murky mess when it comes to mental illness. For today, I'm sticking with just one mental illness, thought disorders. There are mood disorders, personality disorders and who knows what else. The big ones seem to be bipolar disorder, major depressive disorder and schizophrenia. These are umbrella terms and just like cancer can be Stage I through Stage 4, the severity of any mental illness falls under a spectrum.
To make matters worse, many symptoms are similar. Because of symptom overlap, it can take time for a good psychiatrist to peel away the layers and make an accurate diagnosis. The diagnosis guides the treatment. The importance of a correct diagnosis can not be overstated.
That's my second grade analysis of a highly complex issue. Since I'm new to all of this and I don't proclaim to understand too much of anything, rather than misspeak or come across as a know it all who is really an idiot, I'm keeping it as simple as possible.
The diagnosis is a thought disorder. Now what? Here's what........ coverage for care under our health insurance policies is handed off to the behavioral health management contractor to determine what level of care is appropriate, to provide prior authorization, from a desk a gazillion miles away, based upon the clinical evaluation of the doctors who are looking at the actual patient, ultimately, to say, "Sorry, THAT may be the best care, but THIS is where you have to go because THIS is one of our chosen facilities." AND, that presumes they even approve the care to begin with. A big presumption and one that we are often forced to fight for.
To add insult to injury, despite mental health parity laws, most of those laws don't apply to all (many, most) policies so treatment is generally restricted to 30 sessions with a psychiatrist and a therapist (combined) and if hospitalization is necessary, 30 days and out. Those are the annual limits. If you start the year off poorly, you'd better get your act together by March or April because the "benefits" are exhausted until the following January. IF you even have insurance, again another day for that part of the story.
Let me just say this. This System Sucks. It sucks: not a little bit, not somewhat, not a lot. The ENTIRE system sucks. Entirely.
My personal beef today? A NYS Empire Blue Cross policy is in effect. It has all of those stipulations and it has one extra just to make the situation a bit more impossible. As if that were even possible but alas..... Since the policy is a NY policy, treatment can only be in a NEW YORK facility. Empire is part of Anthem and Anthem has a national network of facilities. If there is no appropriate facility in the network within the state, technically, an appropriate facility either completely out of network or within their network but outside of the state should be made available for appropriate care. At least, that was the bill of goods that was sold along with this particular non ACA but ACA compliant policy.
Yeah. Good luck with that. New York, particularly Long Island, is a NIMBY area. Not In My Back Yard. Anything having to do with treatment for the the mentally ill, the attitude? Take it elsewhere. The closest appropriate facility, in this case, is in Connecticut. To be precise, Danbury, CT which is about 5 miles from the NY border and ten miles from the town of Brewster in NY where this is all playing out. Can't cross the state line even thought the Danbury facility is IN the Value Options network and there is nothing comparable to afford proper care. And, a quick wiki search reads as follows: Danbury is located within the NYC Metropolitan area. Add that to the list of "it's a felony if you cross state lines" .... being mentally ill ... the latest felony.
Yes, I've done my homework on the benefits and I'm ready to throw down for a fight. But, I find it horribly distasteful that I should have to be involved in this battle at all. It's a disgrace. It's appalling. It's disgusting. And, with HIPAA, unless the mentally ill cardholder has signed the necessary permission forms, those of us whose thoughts are (mostly) not disordered, can't even fight on their behalf. AGAIN, another day for yet another obstacle. Along with this for another day: Most of those with mental illnesses find themselves in jail, or homeless or if they are lucky enough, they have an endless well of money from which to draw for treatment.
Shame on Anthem, shame on Value Options, shame on every person who cries NIMBY, shame on us as a supposed civilized country when we are incapable of taking care of those among us who need it most.
Today, I hang my head in shame because I'm one little voice and there aren't enough little voices to band together and be that BIG voice demanding to be heard, demanding change. I will continue to use my little voice because it's the right thing to do.
THIS is something I will see change.
The stigma stops here.
PS:
Note to Value Options: For REAL, how can you post guidelines written in 2004 as the provider reference for treatment?? Reviewed in 2011 and again in 2013. By WHOM?? Do those guidelines contain ANY of the research published over the past 13 YEARS?
Note to everyone else: Who knows a better word for "Disgusted" because that really isn't capturing my feelings or even scratching the surface......
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In other words, a stacked deck. In fact, we, the consumers, don't even get a card to hold, except of course, a worthless insurance ID card. For those who recall my recent issues with my medications, this is not about Health Republic. I'm still a fan.
The is about Blue Cross. Or as it's called in NYS, Empire Blue Cross Blue Shield. If I've gotten all of my facts correct, it's all part of Anthem. And if I've gotten the rest of my facts straight as it pertains to mental illness, just like medication management is outsourced, "behavioral health" is also outsourced. It would appear their chosen management company is Value Options.
Let's start with the terminology, shall we? Behavioral health?? Seriously?? I looked up the definition of behavior and all of its forms. Technically, mental illness could be classified as behavior within the broadest terms but to me, behavior is something about which we have a choice, something we might control, something we might learn or unlearn.
It is from that personal framework that I make this statement:
MENTAL ILLNESS IS NOT A BEHAVIORAL HEALTH ISSUE. IT'S A DISEASE OF AN ORGAN. SPECIFICALLY, THE BRAIN.
I challenge anyone to debate the issue. Any day, any where.
And now, the story. My first steps into the world of mental health advocacy.
A thought disorder was diagnosed. Thought disorder sounds so much better than the language currently in use.
Schizophrenia.
Instant stigma.
I'm learning much and I'm learning quickly. I'll spare you the facts and figures. I'll spare you the textbook version of how to achieve the best possible outcome when a person is diagnosed with a thought disorder. I'll simply say that the diagnosis generally follows a psychotic break. A person may be hearing voices or chatter in their head but not all thought disorders involve voices. At the most basic level, schizophrenia, a thought disorder, is a pattern of disorganized thinking. The disorganized thinking is debilitating unless it is properly treated. In some cases, people can go on to pursue careers in law, education, research. In other cases, the stress is too much under which circumstances, a more relaxed career path is necessary. In still other cases, work is simply not possible. (And in those cases, that does not mean, unfulfilled lives. There are other opportunities but that's for another day.)
Here's the thing. This is not a behavior that can be worked on by the individual afflicted with the thought disorder. It requires a team of professionals. Medication management and tweaking of meds is key. CBT and in some cases, even DBT may be used. Group therapy and individual therapy are still another part of the treatment protocol. And here's the other thing, for someone to have any chance at a so-called normal life, this type of care doesn't follow a specific timetable. Every brain is different, the treatment of these diseases is fluid, and it appears every component of the aforementioned care affords the best chance for that so called "normal life." Not one or two. This isn't a Chinese menu.
Unlike cancer, where there is a specific set of NCCN guidelines which, for the most part, are accepted as standard of care and employed in treatment, there's nothing but a murky mess when it comes to mental illness. For today, I'm sticking with just one mental illness, thought disorders. There are mood disorders, personality disorders and who knows what else. The big ones seem to be bipolar disorder, major depressive disorder and schizophrenia. These are umbrella terms and just like cancer can be Stage I through Stage 4, the severity of any mental illness falls under a spectrum.
To make matters worse, many symptoms are similar. Because of symptom overlap, it can take time for a good psychiatrist to peel away the layers and make an accurate diagnosis. The diagnosis guides the treatment. The importance of a correct diagnosis can not be overstated.
That's my second grade analysis of a highly complex issue. Since I'm new to all of this and I don't proclaim to understand too much of anything, rather than misspeak or come across as a know it all who is really an idiot, I'm keeping it as simple as possible.
The diagnosis is a thought disorder. Now what? Here's what........ coverage for care under our health insurance policies is handed off to the behavioral health management contractor to determine what level of care is appropriate, to provide prior authorization, from a desk a gazillion miles away, based upon the clinical evaluation of the doctors who are looking at the actual patient, ultimately, to say, "Sorry, THAT may be the best care, but THIS is where you have to go because THIS is one of our chosen facilities." AND, that presumes they even approve the care to begin with. A big presumption and one that we are often forced to fight for.
To add insult to injury, despite mental health parity laws, most of those laws don't apply to all (many, most) policies so treatment is generally restricted to 30 sessions with a psychiatrist and a therapist (combined) and if hospitalization is necessary, 30 days and out. Those are the annual limits. If you start the year off poorly, you'd better get your act together by March or April because the "benefits" are exhausted until the following January. IF you even have insurance, again another day for that part of the story.
Let me just say this. This System Sucks. It sucks: not a little bit, not somewhat, not a lot. The ENTIRE system sucks. Entirely.
My personal beef today? A NYS Empire Blue Cross policy is in effect. It has all of those stipulations and it has one extra just to make the situation a bit more impossible. As if that were even possible but alas..... Since the policy is a NY policy, treatment can only be in a NEW YORK facility. Empire is part of Anthem and Anthem has a national network of facilities. If there is no appropriate facility in the network within the state, technically, an appropriate facility either completely out of network or within their network but outside of the state should be made available for appropriate care. At least, that was the bill of goods that was sold along with this particular non ACA but ACA compliant policy.
Yeah. Good luck with that. New York, particularly Long Island, is a NIMBY area. Not In My Back Yard. Anything having to do with treatment for the the mentally ill, the attitude? Take it elsewhere. The closest appropriate facility, in this case, is in Connecticut. To be precise, Danbury, CT which is about 5 miles from the NY border and ten miles from the town of Brewster in NY where this is all playing out. Can't cross the state line even thought the Danbury facility is IN the Value Options network and there is nothing comparable to afford proper care. And, a quick wiki search reads as follows: Danbury is located within the NYC Metropolitan area. Add that to the list of "it's a felony if you cross state lines" .... being mentally ill ... the latest felony.
Yes, I've done my homework on the benefits and I'm ready to throw down for a fight. But, I find it horribly distasteful that I should have to be involved in this battle at all. It's a disgrace. It's appalling. It's disgusting. And, with HIPAA, unless the mentally ill cardholder has signed the necessary permission forms, those of us whose thoughts are (mostly) not disordered, can't even fight on their behalf. AGAIN, another day for yet another obstacle. Along with this for another day: Most of those with mental illnesses find themselves in jail, or homeless or if they are lucky enough, they have an endless well of money from which to draw for treatment.
Shame on Anthem, shame on Value Options, shame on every person who cries NIMBY, shame on us as a supposed civilized country when we are incapable of taking care of those among us who need it most.
Today, I hang my head in shame because I'm one little voice and there aren't enough little voices to band together and be that BIG voice demanding to be heard, demanding change. I will continue to use my little voice because it's the right thing to do.
THIS is something I will see change.
The stigma stops here.
PS:
Note to Value Options: For REAL, how can you post guidelines written in 2004 as the provider reference for treatment?? Reviewed in 2011 and again in 2013. By WHOM?? Do those guidelines contain ANY of the research published over the past 13 YEARS?
Note to everyone else: Who knows a better word for "Disgusted" because that really isn't capturing my feelings or even scratching the surface......
Like it? Share it!
Friday, February 14, 2014
HAPPY NATIONAL ORGAN DONOR DAY!
Happy Valentine's Day! More importantly, did you know today is National Organ Donor Day? I didn't, or maybe I did and I forgot. Thanks to a tweet from my dear friend, Stephanie, I was reminded.
I'm an organ donor. I recall having conversations regarding eligibility of cancer patients to donate organs. I don't recall the answer. I do know that if my organs can't be used for transplant and they can be used for research, they will be in the hands of a researcher after I'm gone.
I'm reposting Stephanie's story which originally appeared here in September of 2012. It seems fitting to post it today, the day we are surrounded by hearts and flowers. Stephanie's heart, the heart of a donor, is HUGE.
I would encourage everyone to investigate organ donation and consider the gift of life.
There are stories out there, some rather close to me, that would rip your heart out. Literally. Please. Think about it. A beautiful life that is changing the lives of many may be the life you save. A life like Stephanie's:
MyHeart: NOT my Own
Let me begin by saying that I am an ordinary wife and mom doing life in the metro Atlanta area, but my life has been extraordinary. Even so, you will find that I am more like you than not as you get to know me.
I was diagnosed with Ewing's Sarcoma, a rare form of childhood cancer, at 8 years of age when cures were not thought possible, especially in children. My parents were told that I would likely die within 6-12 months; however, they were offered treatment as part of a clinical trial. Believing they had nothing to lose yet everything to gain, my parents agreed to enroll me into a prospective, randomized clinical trial investigating dosing and scheduling of the chemotherapy.
I completed 21 months of treatment comprised of 30 radiation treatments to my left chest and chemotherapy consisting of Vincristine, Cytoxan, Actinomycin-D, and Adriamycin.
To my knowledge, I remain the sole survivor of a study that has been instrumental in determining today's best approach to the treatment of Ewing's Sarcoma in the child diagnosed today in 2012.
During my treatment days, I found myself desiring one thing, the company of a fellow traveler. In a day where cures were not common, such fellowship was not readily available. Compelled by that desire, I chose to enter into clinical practice first as a bedside nurse, then as a nurse practitioner serving children and families facing childhood cancer.
I believe that my lived experience enlightened my clinical practice and the children and families I cared for were well served by the fact that I was a survivor of childhood cancer though it was the few who were privy to my medical history.
The reality is that cure[s] do not come without consequence[s].
The treatment that I received left significant and irreparable damage to my heart, lungs, musculature, my shoulder girdle, and my left chest wall.
In particular, the combination of chest radiation and Doxorubicin damaged my heart's ability to “squeeze” blood to the rest of my body while leaving my left lung fields “whited out” with fibrotic/scar tissue. I have a significant curvature in my spine due to the unilateral radiation of the tumor bed, my shoulder girdle is deformed due to damage to my collar bone such that it rotates inward and forward causing 'winging' of my left shoulder blade, and my chest wall underdeveloped and collapsing the upper lobe of my left lung.
I read that paragraph and I sound like a living, barely breathing, contorted train wreck. Truly, I am not. I am attaching a picture to prove it :)
Our son, a babe I was told would never be because my heart would not be strong enough is our joy boy. He's lived a lifetime in 9 years filled with one trial after the next, yet his joy is abiding because it is not grounded nor dictated by circumstance. Amazingly, my heart functioned normally throughout my pregnancy and only towards the end of my term did my lung capacity diminish, yet despite the challenges, we welcomed our son to LIFE in April 2003. My heart spit and sputtered with the post partum diuresis that takes place, but was managed medically and I bounced back to normal. Normal in my world is likely abnormal in your world. Essentially, my heart function bounced back to 30%, my normal, compared to 60-65% most people's normal.
It was in 2006 that I was counseled that my heart function was slowly declining and the recommendation was made that I undergo valve repair surgery in the hopes that my heart muscle would then be able to function at a higher level.
I underwent that surgery in 12/2007 at the Cleveland Clinic in Cleveland, Ohio.
The surgery was successful in restoring the heart valves to optimal function; however, I did not recover as my heart muscle became nothing but a flutter with about 5% squeeze in early February.
By mid-February, my body became refractory to medical therapy and we learned that my case for transplant locally had been declined. I was admitted locally for the last time in mid-April with end stage heart disease one week away from evaluation for heart transplantation at the Cleveland Clinic.
Life-flighted to Cleveland on 4/19, submerged into a coma, then placed on ExtraCorporeal Membraneous Oxygenation support and listed with UNOS** as a status IA [life expectancy less than 30 days], I received the gift of an opportunity at continued LIFE through the death of a 17 year old young lady who checked “yes” at the Department of Motor Vehicles.
Today, I find myself once again compelled to give of my heart, my LIFE into the hands others that they might take heart and glean some benefit as a result.
This life I will live is full of hope and future and inasmuch as my heart is not my own, neither is my life.
To that end, I have joined hands with Judy Bode who lives the daily reality of a heart now failing secondary to radiation therapy used to cure her of Hodgkin's Disease as a child in the founding of myHeart, yourHands Inc.
Our battle cry is late effects of cancer therapy.
myHeart, yourHands is a not for profit aimed towards raising awareness regarding the potential late effects of cancer therapy among ALL cancer survivors and the frontline healthcare providers charged with their care as well as to inform the population at large about the critical need for registered organ donors.
I invite you to visit us at www.myheartyourhands.org and I thank you for your thoughtful consideration of our stories in relationship to your network.
Simply
Steph
**AM here, back with more info---
Clinical trials? ClinicalTrials.gov is a good place to start
Late effects of cancer therapy? I can make a joke about my worsening chemobrain..... or I can let Steph's words stand alone. People are in dire situations from the treatment that "saved their lives."
It's no joke. We simply MUST do better.
BE A #FEARLESSFRIEND
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Friday, February 7, 2014
STOP DENYING OUR MEDICATION #NeedMyMeds
There's quite a TwitStorm swirling and frankly, I'm backing out of the whole thing. Cancer envy. Breast cancer is a good cancer. In comparison. If you don't know what I'm talking about, a good place to start would be with the Salon article written by Mary Elizabeth Williams. She is a metastatic melanoma patient. Then, you can meander over to Seporah Raizer's piece in HuffPo. There are plenty of other articles but the last one I'll leave you with is the blog post written by one of my favorites, The Cancer Curmudgeon.
Breast cancer is the enviable cancer. GRRRRRR. Words like Cancer Envy and Cancer Olympics really have no place in the world of advocacy. Cancer is being looked at on a molecular level so I have to believe we are very quickly heading toward less organ specific research. Science is looking at genetic aberrations, over or under expression of specific proteins, pathways that are open or closed. This isn't my grandmother's cancer although, for the moment, it's still being treated in much the same way. Breakthroughs are going to transcend organs. That's my non-medical, non-scientist, just sitting in the cheap seats opinion.
Thus, I do not want to engage in the conversation about why one cancer is better than another. Or why one cancer is funded more than another. I choose to advocate against stigma attached to any disease and I choose to open my mouth in ways that can be helpful. I'm irritated by the whole thing but we are all stamping our feet with our arms folded, insisting our view is the right view. When I looked at myself and began to feel like a petulant child, I backed away.
Right now, there is a real and immediate problem that MUST be addressed. Prior approval for prescribed medications. This is a problem. It's real and it's now. And it's urgent.
My medications have finally been approved. The insurance company was on board with me the whole time. I've thanked them privately and I've thanked them publicly. I wish I could say the same for US Scripts but alas, they are scum. Ditto, Medco/Express Scripts. When I was trying to pick up my medications, the medications the Chief MEDICAL Officer of the insurance company insisted they approve, they were not approved. When I waited on hold for 25 minutes, was asked for my number in case we got disconnected, was told I would need a supervisor, was subsequently disconnected and my call was NOT returned, I wanted to scream. Instead, I waited for Ed who fixed everything the following day.
I've been put on notice. One of my medications is absolutely, positively never going to be approved again. This is a "one time deal" unless.... Unless WHAT??? I've printed out the form for my doctor. I will ask him to send me a copy of whatever he submits to US Scripts for next month's merry go round circus of events.
In the meantime, there are thousands, likely tens of thousands of people who are in the same boat. Except, their medications are for conditions where there is a bit more urgency. This commentary in the Tampa Tribune hits on every point of this medication mess. I've spoken to a number of people who are awaiting an appeals process. Others have just walked away or accepted a substitute medication. Here's the thing. I WILL use generics when available and in the case of one of my medications, I DID switch when a generic was available. The problem? The generic did not work. My symptoms were back and I was in bad shape.
I have to do a little more homework regarding this aspect of managed care. Is there some sort of loophole buried within the pages of the ACA that has triggered this fiasco? It's all too coincidental that these problems began on January 1. I'm going to do a little digging to try to understand what the hell happened. And I plan on starting a TwitStorm of my own. For now, #NeedMyMeds is how I've tagged a few tweets.
If you have a problem, I hope you will consider using social media to voice your discontent. The twitter symbols @ and # can be used on Facebook too. I have no idea how that all works but the two companies that are stepping on my last nerve are Medco/Express Scripts (yes, a merger because we need LESS competition and MORE control by a bureaucracy) and US Scripts. I can't say for certain if they are on Facebook but they do have twitter handles. Not being used by them, but that hasn't stopped me from tagging them in a few tweets. @ExpressRxHelp and @USScript
And, following the suggestion of the ever fabulous Jude Callirgos, I'm going to double hashtag my tweets.
Feel free to share your stories or leave links to blogs in the comments. I'm not taking this one on the chin. If I were stepping into the ring, I'd say the gloves are all laced up but since hockey is my sport of choice, that means I've dropped the gloves and I'm ready for a fight. Steer clear.
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Breast cancer is the enviable cancer. GRRRRRR. Words like Cancer Envy and Cancer Olympics really have no place in the world of advocacy. Cancer is being looked at on a molecular level so I have to believe we are very quickly heading toward less organ specific research. Science is looking at genetic aberrations, over or under expression of specific proteins, pathways that are open or closed. This isn't my grandmother's cancer although, for the moment, it's still being treated in much the same way. Breakthroughs are going to transcend organs. That's my non-medical, non-scientist, just sitting in the cheap seats opinion.
Thus, I do not want to engage in the conversation about why one cancer is better than another. Or why one cancer is funded more than another. I choose to advocate against stigma attached to any disease and I choose to open my mouth in ways that can be helpful. I'm irritated by the whole thing but we are all stamping our feet with our arms folded, insisting our view is the right view. When I looked at myself and began to feel like a petulant child, I backed away.
Right now, there is a real and immediate problem that MUST be addressed. Prior approval for prescribed medications. This is a problem. It's real and it's now. And it's urgent.
My medications have finally been approved. The insurance company was on board with me the whole time. I've thanked them privately and I've thanked them publicly. I wish I could say the same for US Scripts but alas, they are scum. Ditto, Medco/Express Scripts. When I was trying to pick up my medications, the medications the Chief MEDICAL Officer of the insurance company insisted they approve, they were not approved. When I waited on hold for 25 minutes, was asked for my number in case we got disconnected, was told I would need a supervisor, was subsequently disconnected and my call was NOT returned, I wanted to scream. Instead, I waited for Ed who fixed everything the following day.
I've been put on notice. One of my medications is absolutely, positively never going to be approved again. This is a "one time deal" unless.... Unless WHAT??? I've printed out the form for my doctor. I will ask him to send me a copy of whatever he submits to US Scripts for next month's merry go round circus of events.
In the meantime, there are thousands, likely tens of thousands of people who are in the same boat. Except, their medications are for conditions where there is a bit more urgency. This commentary in the Tampa Tribune hits on every point of this medication mess. I've spoken to a number of people who are awaiting an appeals process. Others have just walked away or accepted a substitute medication. Here's the thing. I WILL use generics when available and in the case of one of my medications, I DID switch when a generic was available. The problem? The generic did not work. My symptoms were back and I was in bad shape.
I have to do a little more homework regarding this aspect of managed care. Is there some sort of loophole buried within the pages of the ACA that has triggered this fiasco? It's all too coincidental that these problems began on January 1. I'm going to do a little digging to try to understand what the hell happened. And I plan on starting a TwitStorm of my own. For now, #NeedMyMeds is how I've tagged a few tweets.
If you have a problem, I hope you will consider using social media to voice your discontent. The twitter symbols @ and # can be used on Facebook too. I have no idea how that all works but the two companies that are stepping on my last nerve are Medco/Express Scripts (yes, a merger because we need LESS competition and MORE control by a bureaucracy) and US Scripts. I can't say for certain if they are on Facebook but they do have twitter handles. Not being used by them, but that hasn't stopped me from tagging them in a few tweets. @ExpressRxHelp and @USScript
And, following the suggestion of the ever fabulous Jude Callirgos, I'm going to double hashtag my tweets.
#MedsDenied #NeedMyMeds
Feel free to share your stories or leave links to blogs in the comments. I'm not taking this one on the chin. If I were stepping into the ring, I'd say the gloves are all laced up but since hockey is my sport of choice, that means I've dropped the gloves and I'm ready for a fight. Steer clear.
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Wednesday, February 5, 2014
CURE DIVA - A DREAM REALIZED AND A BENEFIT TO ALL OF US
I've been lucky. There have been many "in real life" meetings over the past two years and every one of them has been special.
Efrat Roman is my friend. We met last summer and had a lovely time sipping drinks in the lobby of the Waldorf in NYC. She was here on business from her home in Israel.
Efrat was working on the finishing touches of Cure Diva which was launched in NYC on October 10th. It was quite an event. Cure Diva is a site like no other. Everything in one place. Stuff. Things. Fans, wigs, clothing, cool pearls (literally, to help with those hot flashes)-yes, things I never knew existed and things I wish I could have easily found in 2006 when I was scouring the internet to figure out how to make sure I had all the necessities in advance of my surgery.
Today, I have a guest post on the Cure Diva blog page and I am ever so thankful for the invitation to share my experience with Cure Diva followers. I hope you will hop over and read it!
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Tuesday, February 4, 2014
THANK YOU @HRI_NY - I AM IMPRESSED !!!
It's World Cancer Day and I stand in solidarity with every single person who has been "touched" (I would say ravaged but I'm always accused of over-dramatizing) by the disease. At this moment, two people who mean the world to me are in hospice care. They are both young and I am heartsick.
I think about my mom and my dad. I think about all of the friends I've made and everyone whose love has graced my life, I think about the global connections that I've made and how they have enriched my life. Cancer is not a gift but the friendships are deep and for that I am deeply grateful.
I have to set the rest of the World Cancer Day "festivities" aside to mention how tremendously impressed I am with my NEW health insurance company. I'm impressed with the way they embraced social media. I found them when I was utterly frustrated to find affordable replacement coverage where I could continue my care at MSKCC. All of the policies were changing and the networks, too. Contracts were being renegotiated. (I'm presuming that part of it but it surely seemed like that is what was going on in NYS.)
Health Republic sent a message out into the world that is twitter announcing that MSK is part of their network of providers. I contacted my broker who provided me with all of the information and I had an option that was reasonably priced for the best coverage offered by the company. YAY.
Fast forward to last week. It's time for me to pick up prescription refills. I hadn't gotten my new ID number. The pharmacy called. Please come in with your new insurance card. The refill for two medications would have cost $150.00 under my expired plan which is still exorbitant, but without my insurance in place, the tab was in excess of $1100.00.
I already did some homework and I knew the femara is on a list of medications that must be authorized by US Scripts. I faxed all the necessary paperwork last week for the femara. The other medication is from a different doctor. I spoke to him on the phone, also last week, when he collected every bit of information and contacted US Scripts.
This morning, the local pharmacy called me to tell me they still hadn't heard anything, that my medications were still in the bin, and QUOTE:
"It's ridiculous. For every prescription we are able to fill, there is another one that now requires authorization. We are spending all of our time on the phone, calling customers, doctors and insurance companies."
I understand. I'm trying to have patience with all of this but frankly, the Affordable Care Act, which is at the center of this commotion, is a matter I have refrained from discussing. I understand the system is broken. I understand that health care costs are out of control. I understand that many people have no access to health care and this is wrong.
I have no suggestions about fixing it thus it seems a bit disingenuous to bitch about something for which I can offer no solution. However, this so called health care reform, is starting to feel a bit like I am being pushed to CONFORM which, as an engaged patient with a decent understanding of evidence based medicine, does not sit well with me.
Still, the mass exodus and cancellation of present insurance plans on the part of several companies in NYS has created a situation that is nothing short of an epic mess. The doctors are frustrated. The pharmacists are frustrated. The patients are frustrated. And at least one Chief Medical Officer of a newly formed insurer is frustrated. I know this because he called me. Yesterday.
In my frustration, I tweeted:
There was a bit of back and forth banter and a few people retweeted my message. Thanks to the time stamp on my tweets and caller ID, I know it was less than an hour between the first tweet and the phone call. The voice on the other end was a normal person. He identified himself as Ed Anselm and said he understood I was having a bit of a problem with my prescription medication.
What I learned as the conversation continued? DOCTOR Anselm is the Chief Medical Officer of my new health insurance company. They have a presence on social media and obviously, they have someone paying close attention to the twitter feed. He asked me a few questions about my medications. I told him I had been on them for six years and that I wasn't having any luck getting authorization to pick them up unless I was ready to part with lots of money. He promised to call me back within 30 minutes. When the return call was 35 minutes later, he apologized for being late.
We chatted a bit, he gave me his phone number and instructed me to contact him to let him know that the issue was resolved and that my medications were in my possession. Because of this latest round of unexpected snow, I got distracted trying to help a stranded kid get back from Phoenix. He's still there although if he doesn't get back before early this evening, he will likely remain stranded until Thursday. Apparently, another storm is heading through these parts later today.
I know this. If the issue isn't resolved today, Ed will make it right. I'm impressed. I'm impressed with the expeditious response to a social media shout. I'm impressed with the follow up by Dr. Anselm. I'm beyond impressed by the fact that the chief medical officer placed the call to me to get to the bottom of this. That's hands on and that's quite simply, IMPRESSIVE.
I still don't have my meds, but I still haven't seen a snow plow on my street either. Since I gave up the SUV when the kids no longer required mom's taxi, I'm snowbound until the road is cleared. I have about five days of meds left. I'm beyond confident that this matter will be completely resolved in no time at all.
Shout out to Health Republic for doing it right. If they could put in a word with the Snow People, I'd be mighty grateful. Yeah, yeah, YEAH... it looks beautiful. But. Enough already. It's a damn nuisance.
The yellow cast? I refused to open the door. I guess the protective stuff on the glass really does work.
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I think about my mom and my dad. I think about all of the friends I've made and everyone whose love has graced my life, I think about the global connections that I've made and how they have enriched my life. Cancer is not a gift but the friendships are deep and for that I am deeply grateful.
I have to set the rest of the World Cancer Day "festivities" aside to mention how tremendously impressed I am with my NEW health insurance company. I'm impressed with the way they embraced social media. I found them when I was utterly frustrated to find affordable replacement coverage where I could continue my care at MSKCC. All of the policies were changing and the networks, too. Contracts were being renegotiated. (I'm presuming that part of it but it surely seemed like that is what was going on in NYS.)
Health Republic sent a message out into the world that is twitter announcing that MSK is part of their network of providers. I contacted my broker who provided me with all of the information and I had an option that was reasonably priced for the best coverage offered by the company. YAY.
Fast forward to last week. It's time for me to pick up prescription refills. I hadn't gotten my new ID number. The pharmacy called. Please come in with your new insurance card. The refill for two medications would have cost $150.00 under my expired plan which is still exorbitant, but without my insurance in place, the tab was in excess of $1100.00.
I already did some homework and I knew the femara is on a list of medications that must be authorized by US Scripts. I faxed all the necessary paperwork last week for the femara. The other medication is from a different doctor. I spoke to him on the phone, also last week, when he collected every bit of information and contacted US Scripts.
This morning, the local pharmacy called me to tell me they still hadn't heard anything, that my medications were still in the bin, and QUOTE:
"It's ridiculous. For every prescription we are able to fill, there is another one that now requires authorization. We are spending all of our time on the phone, calling customers, doctors and insurance companies."
I understand. I'm trying to have patience with all of this but frankly, the Affordable Care Act, which is at the center of this commotion, is a matter I have refrained from discussing. I understand the system is broken. I understand that health care costs are out of control. I understand that many people have no access to health care and this is wrong.
I have no suggestions about fixing it thus it seems a bit disingenuous to bitch about something for which I can offer no solution. However, this so called health care reform, is starting to feel a bit like I am being pushed to CONFORM which, as an engaged patient with a decent understanding of evidence based medicine, does not sit well with me.
Still, the mass exodus and cancellation of present insurance plans on the part of several companies in NYS has created a situation that is nothing short of an epic mess. The doctors are frustrated. The pharmacists are frustrated. The patients are frustrated. And at least one Chief Medical Officer of a newly formed insurer is frustrated. I know this because he called me. Yesterday.
In my frustration, I tweeted:
WHY am I still fighting w/insurance for pre-authorization for 2 medications I've been on for SIX years. @HRI_NY I'm getting very upset #ACA
— AnneMarie Ciccarella (@chemobrainfog) February 3, 2014
There was a bit of back and forth banter and a few people retweeted my message. Thanks to the time stamp on my tweets and caller ID, I know it was less than an hour between the first tweet and the phone call. The voice on the other end was a normal person. He identified himself as Ed Anselm and said he understood I was having a bit of a problem with my prescription medication.
What I learned as the conversation continued? DOCTOR Anselm is the Chief Medical Officer of my new health insurance company. They have a presence on social media and obviously, they have someone paying close attention to the twitter feed. He asked me a few questions about my medications. I told him I had been on them for six years and that I wasn't having any luck getting authorization to pick them up unless I was ready to part with lots of money. He promised to call me back within 30 minutes. When the return call was 35 minutes later, he apologized for being late.
We chatted a bit, he gave me his phone number and instructed me to contact him to let him know that the issue was resolved and that my medications were in my possession. Because of this latest round of unexpected snow, I got distracted trying to help a stranded kid get back from Phoenix. He's still there although if he doesn't get back before early this evening, he will likely remain stranded until Thursday. Apparently, another storm is heading through these parts later today.
I know this. If the issue isn't resolved today, Ed will make it right. I'm impressed. I'm impressed with the expeditious response to a social media shout. I'm impressed with the follow up by Dr. Anselm. I'm beyond impressed by the fact that the chief medical officer placed the call to me to get to the bottom of this. That's hands on and that's quite simply, IMPRESSIVE.
I still don't have my meds, but I still haven't seen a snow plow on my street either. Since I gave up the SUV when the kids no longer required mom's taxi, I'm snowbound until the road is cleared. I have about five days of meds left. I'm beyond confident that this matter will be completely resolved in no time at all.
Shout out to Health Republic for doing it right. If they could put in a word with the Snow People, I'd be mighty grateful. Yeah, yeah, YEAH... it looks beautiful. But. Enough already. It's a damn nuisance.
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Monday, February 3, 2014
I LOVE YOU @JADA_FA
It began with hope....
I always called her "sweet one" and now, at 34 years old, Jada has been stolen from us. I am beyond heartbroken. I will cherish her notes of love to me and I will especially cherish the outpouring of love that followed a message sharing this sad news with a once again, heavy hearted community.
Rest in peace, Sweet One. Know that YOU are loved and YOU will never be forgotten.
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Got my PET scan results! Good news, no other lesions only the tumor on my left breast thank God! Mastectomy next week, there is hope! #bcsm
— Jada (@Jada_FA) September 1, 2012
#bcsm I'm having a radical bilateral mastectomy with reconstruction (expanders) this Saturday, would really appreciate any tips, advice...
— Jada (@Jada_FA) September 6, 2012
@chemobrainfog thank you so much, I
love you for being so supportive always! You are a gem (hugs)
— Jada (@Jada_FA) September 6, 2012
And then, there was a diagnosis of metastatic disease. We all walked beside Jada. We held her up, we celebrated the small victories and hoped for an endless well of treatment options. That's the way it is with metastatic disease. Our wish, our hope: May you never run out of treatment options.
I'll never forget your support @chemobrainfog, love you AnneMarie <3
— Jada (@Jada_FA) September 10, 2013
Today is my 1st bilateral mastectomy anniversary, special thanks to @chemobrainfog for being there for me the night before giving me tips xo
— Jada (@Jada_FA) September 10, 2013
And then this, on January 27th. Jada's last tweet..... and it ended with death...
Y se me va la vida....and my life goes away....
— Jada (@Jada_FA) January 28, 2014
I always called her "sweet one" and now, at 34 years old, Jada has been stolen from us. I am beyond heartbroken. I will cherish her notes of love to me and I will especially cherish the outpouring of love that followed a message sharing this sad news with a once again, heavy hearted community.
Rest in peace, Sweet One. Know that YOU are loved and YOU will never be forgotten.
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