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Monday, December 28, 2015

"I AM THEM" : A FALLEN ADVOCATE

I am choosing to bear witness. I am choosing to support a friend in need. I am choosing to share the needs of someone who has touched my life in such a profound way, I can't find the words to describe the depth of what I feel. I'm choosing to share Erin's story here and in doing so, I hope, if you have the means to help in any small way, you will consider doing so. A page has been set up on generosity.com. Perhaps you can assist navigating the programs available in Denver where she is presently living by simply providing information.

Technically, Erin is homeless. But for the grace of friends, she would be living in her car. In Denver. In the winter. She has attempted to end her life twice since November. In this season of good will and love and light, there are those among us whose very basic needs are not being met.

I met Erin at a meeting of a group of about 30 advocates and activists brought together from all different disease backgrounds.  We were discussing patient centered care. She brings a wealth of knowledge and perspective from so many angles. Her view is truly from every angle and until now, a big piece of what she lives with has not been discussed.

Erin is dealing with so much as you will see if you click over to the links in the text of this post. It is only most recently, that she made a decision to share the darkest side of her story. It was after her attempt to end her life on November 5 that she made a choice to share what she lives with on a daily basis. Borderline personality disorder is a particularly insidious mental illness and it's one many medical professionals state they are told when entering their chosen field, "Stay away from the borderlines.... they are impossible to treat."

I'm not okay with that. I'm not okay with writing off an entire population and I refuse to accept the words "impossible to treat." I have watched Brandon Marshall share his struggles with the very same illness. I understand someone of Brandon's stature within the NFL make things a bit more accessible to him than to those living with far less, but the basic needs of shelter, food and needles to administer her insulin which are essential for a Type 1 diabetic? No, I can't accept any of this. I hurt for Erin.

When I first met Erin at that meeting, she introduced herself to the group as the microphone made its way around each table. After listing the myriad of things she endures on a daily basis, she concluded her introduction by saying, to a room filled with complete strangers, "I almost didn't make it here because of a suicide attempt." I am sure my gasp was audible and I am thankful that there was one person who would have to do their introduction before the microphone would be handed to me. We were shoulder to shoulder at adjacent tables. I think I may have started my introduction by acknowledging my own gratitude that I had a moment to collect myself before having to speak.

Erin is a MedX scholar and months ago, she was very upset about not being able to get to Stanford for this year's conference. At the 2014 MedX conference, this video was presented. It was a letter she wrote to MedX organizers about disparities that prompted the invitation for her to do the presentation. It was a surgery that stopped her from being there in person. The video is powerful just like everything that Erin writes.

In her own voice, Erin speaks about disparities in her "nice white girl clothes."

 

When interviewed about her participation as a MedX scholar in 2013, Erin speaks about how she wishes to help others.



What none of us could know from her words at that time? While she was sharing her gifts with the world, she was hiding something and that something is an enormous burden. Erin lives with a mental illness.

Erin blogs at Health As a Human Right. If you want to see what has been happening with Erin since 2013 when she spoke so beautifully about giving back to others, I'd suggest you start with her November 3 post, Bearing Witness. Continue reading each subsequent post.

From Suffering to Suffering, Erin shares that she had just attempted to end her life.  She also "outs" herself publicly for the first time, in stark black and white. She had alluded to, but for the most part, chose to hide her mental health history. Fearful, I suppose, it would derail any career goals because we all know how those who admit to mental illness are stigmatized.

Erin raises points in Coping Skills that only one who has tasted those feelings could possible put on paper, including the need for coping skills to deal with her lack of coping skills. When people state, But You Have Your Law Degree, she is quick to share that there is no degree for getting through the system, only grit and determination. Erin has an abundance of both but she is being tested sorely right now. Today. In this very moment.

What Erin shares in Laundry will be triggering to anyone with thoughts of suicide. It's incumbent upon me as an advocate for all to include that trigger warning. There was one suicide attempt that was nearly fatal. It is briefly described. When she writes about doing All The Right Things, we glimpse into Erin's deepest thoughts and her feeling that maybe she didn't do enough of the right things, or maybe, just maybe, there aren't any answers.

Erin then attempted suicide for the second time just days before Christmas. She knew what was next and she wrote all about The Truth About Psych Wards. Readers of this blog may recall an episode where I was with a friend in a psych ward and Erin is spot on accurate. There is no treatment in a psych ward. Stabilize and release.

As of this writing Erin's most recent post, You Should Write A Book, captures the essence and beauty of the person I see when I speak to Erin or exchange an email or text message. She is not ready to write a book and she likely won't ever do so. She will simply offer her words as a record of what she has lived in the hopes it might resonate with another. In an hour of true personal need, she is still more concerned about advocating for all.

I'm concerned about Erin. I've watched this in real time, helpless from my warm home in New York while Erin was sleeping in a car, terrified when she was radio silent for a 12 hour stretch and today, I ask, especially for those in the advocacy community to help pick up a fellow advocate.

On any given day, this could be any one of us. "Life turns on a dime, Annie." One of my dad's quips. Today, I ask for your help in flipping the dime that is Erin's life in this moment so she can find her way back to the important things she does so selflessly for so many others. I have high hopes for Erin. Her intelligence, her ability to communicate and the fact that she has chosen to expose her deepest vulnerabilities.... putting the potential to better others above her own comfort, this is advocacy at its very very best.

And this advocate has fallen. We can not leave her lying there.



Note: If you clicked away in the middle of reading, I'd like to suggest you go back at your leisure and read this post from start to finish without clicking away. Read it in order. Listen to the videos as they pop up. Then go read everything else.

On a personal note, this will likely be the last post for 2015. I wish each and every one of you a wonderful start to 2016. I have lofty goals (no resolutions!) and I hope you will be by my side as I do my best to help when I can, to change what I can, to yell when I must.

With love,

AnneMarie


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Monday, December 21, 2015

CLINICAL TRIALS, THE LONG VERSION

In March, I wrote a post about the importance of clinical trials. It was my hope to get the word out to as many people as possible. Before starting any course of treatment, before one single thing takes place, ask the question. Whether diagnosed for the first time or because there has been a recurrence, despite that oxygen sucking news, put on your mask and breathe deeply. Remember to ask these words:

How can I find out about ongoing clinical trials that may still need patients?

If the response is nonchalant or if you have a sense that you are being dismissed, do your own homework before determining how you will proceed. Check the online forums. Use social media. Ask in Facebook groups. Send a tweet. Ask a friend. Ask me.

Why? That's a great question and if I am to be truly honest with myself, if I am to put myself back in time and parse out my feelings and the commotion that was my life between April of 2006 and September of 2006, I likely would have bitten off the head of anyone who even hinted that I might want to look at clinical trials.

This is where the experience of those who have walked the path comes into the picture. This is where it's up to us as friends and/or advocates to see if we can find the right moment, when someone is newly diagnosed, to suggest they take a look at what might be available.

Some instances are easier than others although, sadly, it seems the worst case scenarios are those where the suggestion can and does fly right off my tongue. "My (insert relative) was just diagnosed with lung cancer and it sounds really bad. I told her I'd ask if you could give her the names of people...." Yes, that really did happen and yes, my response was immediate. "If I were in this circumstance, I would be looking for a clinical trial before anyone touched me." I went on to explain how trials must adhere to the strictest standards and starting another treatment may exclude your (insert relative) from eligibility.

To take a step back a second and jump on a soapbox, this is one area I do believe advocates at the table during trial design might make a difference. I made a difference but it was well post treatment and when I shared my experience here, I didn't fully understand the manner in which trials are designed. We may have suggestions that could be incorporated into the inclusion criteria and the endpoints that may make for a more meaningful trial. Or not..... but if we aren't included, much more widely than we are now, how will we ever know?

Now, to take a step forward and back into this discussion, what about the early stage patients? They are the ones often faced with many decisions and too much time in between tests and appointments. The perfect recipe for the internet pine box. I know most everyone diagnosed with early stage disease did what I did. Pretty much every day, there came a point where I thought, "I'll take a stroll down the What If Path for the millionth time," asking the same questions with little new information to help formulate my decisions.

It is during this time that clinical trial options can be explored. I can share right off the top of my head two things I would have done. I would have sought out trials to have a cognitive evaluation done before anything else was done to my body after my diagnosis. Again, taking the truth serum, I'm absolutely certain it would have taken some pretty persuasive language to get me to slide into a functional MRI but I do know there were trials going on back then. I know that today. No one even hinted at this in 2006. And I didn't know better, so I didn't ask.

Today, I would love definitive proof that my brain looked differently before eight sessions in an operating room under anesthesia, eight rounds of mild chemotherapy wherein I never lost my hair but I did seem to lose my brain, and eight years and counting on a drug to suppress estrogen. It would have saved countless fights with people and certainly put to rest those who persist in saying, "I didn't have chemo/cancer, what's my excuse?" They mean well. I generally laugh but then, I finally found a way of explaining the difference because yes, there is a difference between chemo brain and getting old brain or too much on your mind brain.

And by the way, what's up with those eights??? I suppose I could find one of those Magic Eight Ball things and see if it has the answer but the answers to everything medical, to everything that will advance the science of understanding and the ways to better and more effective treatments aren't in that Eight Ball, they are in the hands of the researchers. And the researchers can't conduct research without a target patient population. And so, we should be asking the question because the response might be, "Yes, there's an app for that." A research trial app(lication), followed by consent forms and a possibility to help yourself, to help others, to advance the science and develop more effective evidence based practices. Take a bow. That's damn impressive in my book.

At the San Antonio Breast Cancer symposium in 2013, findings were presented for a trial I would absolutely have joined. Truthfully, I would have jumped all over it, quite possibly without even fighting. Or blinking an eye. One of my very first questions was about tamoxifen or an aromatase inhibitor. I knew the benefits and risks of each drug but frankly, although I was pre-menopausal at diagnosis, the chemotherapy pretty much put that over the edge and then, the removal of my ovaries solidified my place in menopause. I knew I preferred the risks of the aromatase inhibitor over the tamoxifen. I did have somewhat of a choice.

At that time, in May of 2007, there were open trials where women taking an AI were given the opportunity to have treatment for bone loss using bisphosphonates, specifically, zoledronic acid infusions. During the appointment for my routine mammography that began my journey into cancer land, I had my very first bone density exam. I was already diagnosed with osteopenia. It would make perfect sense for me to do something to keep my bone strong.

Again, who even knew to ask about any sort of treatment and yet, I could have been lucky enough to be part of a clinical trial to study the use of bisphosphonates administered to early stage patients on an aromatase inhibitor. And yes, a quick search of clinicaltrials.gov confirms that there was indeed an open trial, recruiting at several locations including one that was close enough for me to participate.

My doctor didn't suggest this this and I was still on that steep learning curve. I so clearly recall telling my oncologist, "I'll deal with a broken bone over a recurrence," as he was writing the prescription for my femara. The thought of looking for a clinical trial wasn't even in my vocabulary. And yet, there it was. And I was eligible. And because I wasn't a savvy patient, and I had no one to suggest looking at trials, I missed an opportunity.

Two years ago, findings were presented at San Antonio regarding an unexpected benefit of bisphosphonate treatment. It seemed to help prevent bone metastasis in a particular sub-set of patients. I decided it was time to address my osteopenia. I asked a few oncologists their feelings and given the fact that the osteopenia was worsening with every bone density test, there was a medical reason for me to seek treatment. In the scheme of things, it wasn't a broken bone that concerned me, but any edge to prevent a bone metastasis? I'm there. I wish I knew about that trial.

Instead of getting the treatment, I had a brawl with my oncologist's office, first. Then, I got the zoledronic acid infusion, and then I learned there were other studies that should have been shared with me to avoid a three week fever. In April, at my annual follow up, it was determined that I would be given denosumab for my second treatment. That fever made me a failure. I failed on the first medication so I was eligible for denosumab.

(Yes, I would like you to re-read that last thought because it's highly insulting to patients to say we failed on a drug. Did we fail, or is it more appropriate to say the drug failed the patient? A different post for another day. Along with this step therapy nonsense and the inability for a doctor to choose the right treatment for the right patient. Somehow, pharmacy benefit managers get to make those decisions and THAT is a rant that is recent and ongoing.)

Fast forward to San Antonio 2015. A few weeks ago, findings were presented for a trial I would absolutely have joined. Truthfully, I would have jumped all over it. I've always wanted to go to Vienna and this would have given me reason to travel to Austria. I suppose I'd have a bit of an issue here since I would have actually had to choose between the two trials. I couldn't absolutely have joined each of them. Although, I wonder if there was better communication if one or the other trial might have considered adding a third arm to compare bisphosphonates, denosumab or nothing.

Jokes aside,  Dr. Michael Gnant explains the trial in these three videos. I've provided the quick version, the mid version and the hard core science version. It's been written up in the AACR SABCS news release, MedPage Today (complete with video) and Medscape and I'm sure in many other places, too.

The trial was to determine the effectiveness in using denosumab to prevent fractures in patients on aromatase inhibitors. The results are so impressive they will be "unblinding" the trial.

This is important for those who resist clinical trial participation because they are hung up on the idea of "not getting the real drug." Here's why. The results were so remarkable, the effects were so beneficial, it was felt to be unethical NOT to unblind the trial. So there you have it. If you are on the placebo of the next big thing, chances are it will become obvious something is happening and you won't be on a placebo for long after the realization is made. In this case, patients will choose if they wish to be unblinded, they will learn if they were on the placebo and if so, they will be treated with the real drug. Me? I will be fighting with my health insurance company in April for my next treatment.  Clinical Trial: WINNER! AnneMarie/Health Insurer: Fight.

And then, there's the secondary benefit in post-menopausal women. Again, it would seem there is a benefit in disease free survival. Overall survival will take longer to determine and I'm sure the women will be followed. In the video, Dr. Gnant notes that bone treatment is more effective than aromatase inhibitors, tamoxifen or chemotherapy at preventing recurrence.

Looking at everything and drilling it down to get back to what's most important: Clinical trial participation, here's the thing. There are desperation, out of options, Hail Mary pass trials and there are trials to address quality of life or prevention of new cancers. However, in between the two, exist thousands and thousands of trials. We shouldn't be looking at clinical trials as the place to go when all else has failed. Nor should we be looking at trials after the damage from primary treatment has already become something that may be adversely impacting our daily lives. We should be looking into that vast space in between. That's where the advances are happening, that's where the exciting findings are being made, that's where the future of precision medicine lies.

Step up, check them out and if you are eligible, get serious about joining.

And now, let's go to the tale of the (video) tapes....








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Wednesday, December 9, 2015

THE THING ABOUT GENERICS......

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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









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Sunday, November 29, 2015

MARIA'S FEAR - IT DOES HAPPEN




And I want to add, #SometimesYoureRight. It was a prophetic tweet.

Maria and I were together in June. It was exactly five months ago. We were fortunate to be invited to participate in the same meeting. It was some sort of serendipity that the first person I saw upon entering the hotel was Maria. By that point in time, the only thing we didn't already know was how very short I am and how much taller Maria was. Those may have been the first in real life words spoken, "I thought you were taller!" And, I laughed.

It was a roundtable discussion and she was brilliant. She was fine. Except for a pesky irritation. "Allergies. I have this allergy thing going on."

She certainly looked fine to me. See for yourself. This was in June. Five months ago. 



One month later, she was with Terry Arnold. Maria and Terry both share the rare breast cancer space, each with their own version of rare. The allergy thing was far worse. In fact, it was so bad that Terry insisted she leave to get checked. I think Terry threw her out of the class. Terry feared it was something bad and sadly, she was right.

Maria's early stage cancer had metastasized to her lungs. On Friday night, I received a message that she had died. She left instructions for a friend and included in those instructions was a note to contact me "when the time came." Five months from the dreaded fear, through the allergies to the diagnosis and ultimately to one more untimely death.

I learned of the lung metastasis one month after our meeting in DC. The email subject was "I have news" and the news was one more sucker punch to the gut. Three weeks earlier our email messages were about researchers. She identified every researcher who was doing anything to study metaplastic breast cancer. One of the researchers was someone with whom I'd worked in the past, someone whose lab I visited. I was going to introduce them. I did make that introduction but instead of collaborating, it was with urgency and for treatment opinions. That was what our emails were all about before I got news. That, and that allergy, which, Maria told me, was getting on her last nerve.

Maria was tireless in advocating for metaplastic breast cancer. She was so much more than that. She was a veteran, she was an exceptionally accomplished journalist and upon learning she was diagnosed with a rare form of breast cancer, she partnered with two others and the Metaplastic Breast Cancer Foundation was formed. She was just profiled on the CDMRP website. She was a consumer reviewer.

Her friend, Jodi, posted this on Facebook. From Maria:

"If you are reading this… I am gone. Yeah, that kind of gone.

I lived a blessed life from the day I was born into a loving family, to the day I met the love of my life Christopher. Even when things went wrong, it always seemed like – in the end- things always turned out well for me. So there is no reason to feel bad for me…. I had it great. I wish it had lasted longer but what I had was great.

I pray for each and every one of my friends that their lives are as blessed going forward as much as I was blessed throughout my life.

You’d never believe how hard it is to write these words or to attempt to say the right thing at the end. So, that’s it. You’ve all been great friends and I am sorry I will not be here to grow old with you. Take care of each other."

It's worth reading her last blog post as we try to figure out how to take care of each other. My Own Personal Crying Game was written in September. She was upset at a conversation that took place on the Today Show between Joan Lunden and Hoda Kotb. I'd suggest you read it. The message that caused Maria's tears is the messaging that marginalizes every single person who develops metastatic disease and it marginalized Maria.

Early detection is key and yet, Maria was the poster child for early detection. Hell, she was on tamoxifen before she ever developed cancer. Maria writes that she should have been "golden" in the land of early detection.

And then, they wanted to get out another message, "Expect to win, stay engaged in life."

Well, Joan and Hoda, I won't share my private email messages with Maria but she expected to win. She called that denial. As for staying engaged in life? The treatment wasn't pleasant. The cancer itself was painful. She tried to stay engaged. When she was able to breathe or wasn't dealing with terrible pain.

And, Joan and and Hoda, despite her early diagnosis, despite her attitude and everything she did to help so many others, she still died. But first, she cried. And I think those with celebrity status should know that there are those who cry because no one wants to tell stories like Maria's. Which leaves it up to those of us whose lives are so profoundly touched by people like Maria. And so deeply hurt upon their death. The pain is palpable and the void will never be filled.





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Monday, November 23, 2015

THREE INFAMOUS LIES

I'm still in insurance hell and I am placing this squarely on the shoulders of the health insurance companies. They are getting away with things, just because they can. Until they can't and if I have anything to say about it, they are going to have to answer for some of the nonsense that is going on at the moment.

My understanding at this point is this. The insurance companies have greatly diminished their networks for individuals and in most cases, small businesses. So, to answer the question in my prior post, YES, the ACA has allowed insurance companies to increase the disparity in healthcare. They are finding each and every loophole and they are exploiting each and every one of them.

I distinctly remember hearing these words come from the president. "You like your doctor, you can keep your doctor." And, "You like your plan, you can keep your plan." This, apparently, was nothing more than political double-talk. It applied to grandfathered plans (which are for the most part, non-existent) and at this point, I did like my plan, it got replaced by a horrible one. I found a new plan and I liked that, too. That's no longer an option, either. Remember that thing about the three biggest lies. I'll stick with the only one that's not raunchy. "The check is in the mail." And, I'll say this. That lie has been blown (for my raunchy friends, yes, find the pun) to bits by this *keep your doctor/keep your plan* lie.

Where do I stand? I hate my options because I have none. I'm being dictated to and even if I wanted to pay a ton of money, NO plan meets my needs. I do not want a gatekeeper. Must I seriously go back to the days of getting a referral to see a specialist? The answer to that question would be a resounding yes if you are part of a small group or on an individual policy. Yes, there are options without the gatekeeper and those policies use some very large and decent networks. However, in the case of the individuals or small businesses, they've butchered the network allowing for extremely limited choices.

Then, we have the medication issue. Two of my medications require prior authorization. It's likely neither will be authorized because there are generic versions. I have nothing against generics except when they don't work and in some people, some generics simply don't work. I had the misfortune of learning that first hand. On my "no gatekeeper" option policy, neither one of my medications is even on their list. Period. End of story. Not even for prior authorization. It's the generic or nothing.

This is wrong on every level. I have checked each policy available to small groups and to individuals. I am only looking at non-subsidized policies ("off exchange").  One by one, they are tossed into the unacceptable pile. I can't begin to imagine the frustration of those who are seeking exchange policies because the subsidy is essential. I wonder how horrific those networks are or what those drug formularies look like.

Enough ranting here. It's time to join forces and involve the officials in NYS who have the ability to do something. I will be doing that.

The only good thing to share today? Trial Reach and Cure Click are joining forces. I'm a big fan of each. You will notice the widget in the upper right column. It happens to be for diabetes trials but as a fan of all research and a bigger fan of clinical trials, the quickest way to accrue clinical trials is by making sure everyone who is eligible to participate is aware the trial exists. Yes, I'm an ambassador for Cure Click. In fact, I am on their advisory board. And yes, I was paid by Trial Reach to assist in a project a few months back. It would be disingenuous for me to fail to share that information but I've said it before and I'll say it again, nothing on this blog is here unless I believe in what they are doing.

I believe in Cure Click and Trial Reach and if you happen to know someone with diabetes, have them take that for a test ride. Will I be compensated? Yes. I'm not even certain what the compensation is. I didn't read that far but I promise this, should I receive any compensation because someone clicked the diabetes button and found a trial, I will take the entire amount and donate it to a diabetes charity. Sometimes it's about the money and other times, like now, it's about seeing how a platform works and if it is an effective means of advancing the research. For me, this is all about the latter.

And now, back to my Albany issues......



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Saturday, November 14, 2015

IS THE #ACA WIDENING DISPARITY? #PATIENTSCount

Nothing is resolved regarding the health insurance debacle. The loopholes are being exploited. There are articles popping up all over the country. People have added links under several Facebook posts. MD Anderson is guilty, too.

I'm not laying this at the feet of the cancer centers, but I am saying to the insurance companies and the cancer centers:

"Sit down at the table and remember that there are REAL PEOPLE who are seeking an option to access care at the major cancer centers. Give us an affordable and reasonable option."

This isn't patient centered. This is self selection or self exclusion and it's happening in offices with charts and people analyzing those charts.

In the meantime, I knew I saw this study and couldn't find it when I posted my rant. Duh. And thanks to my buddy, Diane Mapes for posting a link to an article at Hutch which included the link back to the study. It was on the MSKCC Blog page. It assesses outcomes in free-standing cancer centers, NCCN member hospitals, academic teaching hospitals and community hospitals.

Way to address disparities. I know it's not only MSKCC that has offered no options within their networks. MD Anderson has done the same. I will find the links and get them posted. For now, here's the great image on the MSK Blog.

    
MSKCC says it is attempting to work with insurers to get contracts in place. There are already contracts in place with at least two groups in their network. They just won't allow small groups or individual plans to be included in those groups. Is it because the contract rates are drastically different? Because, from this patient's perspective, if the rates are substantially the same, there is no reason for the exclusion.

Patients Count. Except, we are, once again, the volleyballs. And no, I'm not letting go of this. I expect a more acceptable solution. I expect an option. An reasonably affordable option. In other words, even if the option is 20% higher than the average of the available policies, I'll count that as reasonable.

Anything less and everyone is speaking out of both sides of their mouths. We discuss disparities and then we feed the disparate care by printing a chart that punctuates the disparities??

#PATIENTSCount


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Thursday, November 12, 2015

HEALTH INSURERS ARE A DISGRACE #ACA #EPICFAIL

Seriously, I wanted to begin this post with the most vulgar language I could muster but that's not going to get me anywhere. Besides, I have two things to do next week in somewhat professional settings and I really don't want people looking at this blog to see that.

Here's the problem and as of this moment, there is no solution. Correction. No acceptable solution or affordable solution. Let's back up a minute.

I was insured by Health Republic. I had an individual policy for a family member and one for a small group where I was insured. In September, I was notified the individual policies would all be cancelled on December 31, 2015. Around the same time, I received notification of the premium increase for the small group policy. Yes, it was substantial and yes, I expected it. I'm not a moron and I don't live under a rock. I read and I knew this was coming our way.

Suck it up. Figure it out. It's the running theme of my life. Figure.It.Out. and it seems I'm always figuring shit out myself. The problems could involve a number of different people in my life, but even when they cause the problem, somehow, it gets dumped squarely in my lap to, yes, figure it out.

I'm tired of figuring it out. I'm irritated by the whole concept. I just want to skate along ignorant and happy. My dad always believed I should be ignorant and happy. That I should be protected from things that others should be doing or not doing. I'm not ignorant and I'm not happy either. And, at this point, I'm so irritated, I'm not making much sense.

I was staring down December 31st knowing I had until December 15th to put coverage into place so there will be no lapse in health insurance. Then, on October 31st, which was a Saturday, Health Republic was backed into a corner and told to cease operations by November 30th. All operations-individual and small group. This was the first inkling I had that I wouldn't be able to renew my group, even with stupid numbers in premium increases.

I received the notification on Tuesday, November 3rd. Now, I'm staring at a November 13th deadline for coverage to be effective on December 1st. I need an individual policy with very specific coverage and I need a group policy that is not going to break the back of the small business. Based upon what has been going on for the past week, it would appear this insurance nonsense is ALL on the backs of the small business owners. Keep pushing them down and watch how quickly the trickle down effect of that is going to be. Take those employment numbers that were just rolled out and just watch. This country is being held up by all of the small businesses whose success puts food on many tables and keeps a roof over many heads. Let's mess with the small businesses some more and then, let's mess with those who can purchase off exchange individual policies, too.

And now let's add in a twist. I am a cancer patient. Yes, I'm NED but I am followed by my doctors at Sloan Kettering which is how I would prefer things remain. And yet, it appears I will be seeking care at NYU Langone or NYP/Columbia. By right, I should be finding coverage at NYP. After all, I do scroll across their landing page.

Medivizor, and yes, I'm a huge fan of what they are doing, has a partnership with NY Presbyterian. Apropos of nothing, I'm in their scroll. And for the record, I don't sell myself. I follow what I believe. I've believed in Medivizor since I first learned of the service. So, I'm in the scroll. Wanna see?
Personalized Health Information. I want to scream right now, or pull my hair out. How about some personalized health insurance?

I have been on the phone with my insurance broker every day. He called me on Saturday to see if we could figure it out. On Wednesday, Thursday and Friday, each and every conversation was interrupted no less than five times with updates.

"North Shore LIJ says they can compete with Sloan Kettering. They have a good product. All of their doctors came from Sloan."

I've been in the cancer area of North Shore LIJ and they can't "compete" - they can't even hold a candle to it. The flagship hospital, I've been told, has a bad infection rating. Since I can't be sure the link to the article will work, this was the information regarding infections and fines at the crown jewel in the North Shore LIJ system.

And the snippets continue. They were fined. The worst possible score is a 10. Flagship, "they can compete with Sloan" got an 8.3. That's seriously sucky.
FYI. My dad died in Plainview Hospital (mom, please I hope you aren't reading this). And the scores? I'll be curious to see what happens next month. I'd like to see if they cleaned up their act.
North Shore LIJ just "rebranded" itself and they have their own insurance company. They have also purchased damn near every hospital on Long Island and so far have gotten into three of the five boroughs of NYC, including Manhattan. Lenox Hill was, at one time, a fine hospital. Now, you can see for yourself. Not so much.

That is my affordable option. Buying health insurance from the same company that owns the hospitals. I know this model may be working in other parts of the country, however, I don't buy it. It feels like it should be against the law. It feels like a monopoly. It feels like the fox is guarding the hen house. It feels wrong. Plus, this is the same f'ing health care system that scooped up the hospital where I had a horrific experience in the ICU. That was last October. It was quite a long blog post.

Option one is completely off the table. No WAY am I being stuck inside that hospital system by purchasing their insurance. What options are left?

For my issues, I went on the Sloan Kettering website. They have a list, an up to date list of insurance companies where they are in network.  Armed with the information, my broker and I went down the list of every single carrier. Only large groups, only through your employer, only with a referral (that was pissing me off, but I was willing to finally give in on the referral thing), and at the end of the day it came down to one company. The premium for the platinum plan was somewhere in the 900/month range. Within the hour, the broker called again. From the seminar. "Forget the 900/month option. Didn't you say something about one of your medications?"

And we did the calculation. They found a way to keep people on maintenance medications that are costly off their plans by coming up with this drug nonsense. 30/60/800. HUH? EIGHT HUNDRED???  Eight hundred what?

I am on two brand drugs. One is a cancer medication. I started on brand and I know that it's not a good idea to switch to generic when something is working. I also know that when synthroid went generic, the thyroid specialist at MSKCC who treats my dear friend for her very rare thyroid cancer told her every patient's dose had to be adjusted. Generics are great, but the fillers can be different and they are not the same. Had I started on letrozole, I would have been fine but I didn't. I started on brand, Femara and that is how I intend to finish out my estrogen suppressant treatment for my early stage cancer.

To deal with some of the side effects of the lack of estrogen, I am on another medication. That went generic at some point and I switched to the generic version. When I was lethargic and then completely non-functional, it took me about a month to put two and two together. I called the doctor, switched back to brand and all was well in my world. There's a back story to that as there was a known issue with that medication and patient groups were fighting over the medication. They got an independent lab to prove that the time release was breaking down too fast and after about four years, the FDA pulled the generic off the market. They may have straightened that out, but I'm unwilling to be a guinea pig with medications that did not work. I'm not going off brand. I tried it. It didn't work and I'm not doing it again.

So, the only MSKCC participating network that I am eligible to get will cost me about $2000.00 per month. That would be the premium plus the two prescriptions. There is no max out of pocket with the drugs, either so I'm guaranteed 24K per year plus co pays for all of my doctor visits, blood draws and the occasional visit to the medi-center for an antibiotic when I get the dreaded UTI or if I should develop flu like symptoms or something. Forget about what should happen if I need an emergency room.

What is affordable about that? Limiting access to drugs is one way to negotiate with pharma? Limiting access to drugs that patients really need, patients should appeal and most likely, they will win? Thanks to Marjorie Gallece for sharing this with me on Facebook. This piece is specifically about HIV/AIDS patients and mid priced plans purchased on the exchange. I was looking to buy the best possible plan, off the exchange and I have the same problem. And for what it's worth, MSKCC takes no exchange plans. Period. And for whatever else it's worth, there is a product out there that makes plenty of sense.

It's called Oscar. They use the Magna Care network. MSKCC is in the Magna Care Network. However, Oscar doesn't write small groups (yet????) and MSKCC only accepts Magna Care plans purchased under a group plan. No individual plans accepted.

I vowed to never get political in this blog space but I'm breaking my own rule. The Affordable Care Act? I was never a fan. I saw this coming from miles away. And now, it's in my face. Yes, I abhor Obamacare and I'm tired of hearing about the insurance companies pulling this stunt to force the pharmaceutical companies to do something about their pricing.

There are too many "fail first" rules in place by the health insurers. Doctors don't get to make the decision regarding the drug they feel is best for any given patient. First, you must fail. My health is on the line. My doctor knows me. I know me even better and some clerk at a desk gets to say which medication can be prescribed? A clerk reading like a robot from a script referencing a drug formulary guide that can be manipulated to suit the insurance company. Never mind evidence based or standard of care or my body doesn't work with that drug.

It's all a bunch of bullshit. And pharma is not our enemy. Before you vilify an entire industry, dig into the regulatory issues they deal with. I was sitting with someone earlier this week who was discussing the issues with a clinical trial drug. No, she didn't have to pay for the drug but she did have to fight with the insurance company for routine scans and blood work because her husband wasn't on an approved drug. Pharma would have stepped in and paid for those tests but they are NOT ALLOWED to do so because of the regulatory issues. Her story ended with a huge fight that she had to wage after her husband's death. She had to hire someone to do the fighting. Ultimately, the insurance company paid. There are many villains here. The system is broken. And if we don't all get to the same table, STAT, we are all going to be in big trouble.

As for me, I'll be speaking to Oscar tomorrow. The sad thing about Oscar? They had contracts with NY Presbyterian and Columbia and those were pulled within the last 5 days. To Oscar's credit, they had a banner on their website the moment they knew. Oscar was backed by Google to the tune of 32M. Tom Insel, former director of the National Institute of Mental Health, someone I had the pleasure of meeting just left the NIMH for the greener Google pastures

He believes in Google, Google believes in Oscar and that's enough for me to know I'll be on the red carpet accepting an Oscar policy. Tomorrow. With the help of my broker even though the folks at Oscar reached out to me on twitter which yes, was quite impressive and quite quick. 


As for MSKCC, what's the deal? Why won't you negotiate contracts within a network where you already participate for individual policyholders? Or, in the case of another company, why only large groups and not small groups? It's illogical and it's wrong and I want to say it's discriminatory but I'm sure everyone's legal teams made damn sure there's not a hint of "legal" discrimination in anything. Do morals count for anything? Guess not.

Seems to me like everyone has found a loophole and they are all using those loops to create a noose that just keeps tightening around the necks of those of us who need continuity of care. Shame on the insurance companies and shame on the cancer hospitals that are not providing small businesses or individuals options for care by negotiating reasonable contracts for the rest of us.


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Tuesday, October 27, 2015

INFLAMMATORY BREAST CANCER

Terry Arnold was diagnosed with triple negative Inflammatory Breast Cancer (IBC) in the summer of 2007.  Later she founded of The IBC Network Foundation, focused on funding research for this disease and advocating for the needs of women diagnosed with IBC. What follows is information I asked Terry to put together. For me, October is about education over awareness. Fact over fiction. Evidence over anecdotal. And now, Terry:

Inflammatory Breast Cancer (IBC) is a rare and highly fatal form of breast cancer that is not typically discovered by mammogram and often occurs prior to standard breast cancer screening age recommendations.

Most people are very uneducated about IBC, and misdiagnosis is a common reason for delayed treatment.  Although IBC is viewed as rare, only 4-6% of breast cancer diagnoses, IBC directly causes about 10% of total breast cancer deaths (i.e. 4000 deaths per year in the US) because of both aggressive biology and inadequate treatment.

Due to being classified as a rare disorder with only a clinical diagnosis, IBC does not have a medical encoding number and generally speaking, is not taught in medical or nursing school. Typically IBC does not form a lump but has other clear physical manifestations described in the post below.  As a breast cancer without a lump, IBC is typically not addressed in pink awareness campaigns however we feel very strongly that this form of breast cancer needs to be better known.

A common phase in the IBC community is “rare does not mean never” and for everyone to be more educated about IBC, we will save lives.

During October, for breast cancer awareness month, the IBC Network Foundation has been sharing daily facts about IBC on social media with the #IBCFacts hashtag. These facts highlight differences between IBC and other breast cancers in an effort to promote education about this clinically distinct disease. This post is a collection of these facts written by Terry and one of her volunteers, Dr. Angela Alexander, an IBC and TNBC researcher at MD Anderson. (Note from AM again: Angela is a great friend to the entire breast cancer community. She jumps in to clarify research findings and helps us sort through what may, at times, be impossible to decipher)


For these reasons, we are passionate about including IBC in the conversation so that more women are aware of this orphaned disease and ask that they share this information and advocate for increased research funding for this highly fatal 200-year old form of breast cancer. For more information regarding IBC, visit the IBC Network website at www.theibcnetwork.org or contact Terry or Angela on twitter at @TalkIBC or @thecancergeek.

silence.stats.j.ibcfacts.2.jpg


  1. 5% of total BC, but 10% of BC deaths.
  2. What is IBC? IBC = a type of breast cancer. Has outward signs, and biopsy will reveal invasive breast cancer (usually invasive ductal carcinoma)IBCSymptoms.jpg
  3. No molecular definition exists for IBC yet. Many studies at MD Anderson and elsewhere have tried to find one. We don't know why so hard! 
  4. Who gets IBC? IBC doesn't discriminate. Young/old women can get this form of breast cancer (age 20-70+).  
  5. IBC can arise during/shortly after pregnancy which can be a reason for delayed diagnosis. 
  6. IBC doesn't care what race you are either. Caucasian, African-American, Asian, Middle Eastern...all races susceptible.
  7. Diagnosing IBC is difficult -> not easy to see on a mammogram & often missed. Mammograms can look like thisIBC-mammo.jpg 
  8. IBC skin thickening and diffuse tumor areas are more easily visualized by MRI & ultrasound.
  9. Only one third of women with IBC have palpable lumps. IBC can be spread out over the entire breast very quickly. NoLumpStillCancer!
  10. Have signs of IBC? Make a dr appointment promptly! IBC progresses quickly & earliest detection is at stage 3. 
  11.  At diagnosis, 30% of IBC is already stage 4 (metastatic). The rest is stage 3. There is no early diagnosis possible.
  12.  IBC cells on the move can block lymphatics around the breast. Result = IBC affected breast swells to 2-3 times size of other one.
  13.  Several more differences from other breast cancers to be aware of: IBC breast can have shooting pains, or other physical signs.
  14.  Common IBC misdiagnoses: mastitis, abcesses, reactions to bug bite. Antibiotics often prescribed if dr doesn't know about IBC. 
  15. "Peau d'orange" (literally orange peel skin) is a classic appearance, but not required for diagnosis of IBC. 
  16. IBC treatment is different from regular BC. If you are concerned, get IBC specialist attention - you're worth it. Get the best care! 
  17. There are only a few IBC specialist clinics in the world. MD Anderson was first (and is largest), opened in 2006.
  18. We mentioned IBC treatment is different. Order of care is critical. Chemo 1st, Mastectomy 2nd then radiation if stage 3. 
  19. Lumpectomies are not recommended in IBC. There is no lump to remove. The skin which had/has disease must be removed. 
  20. Radiation is not optional. Its job is to mop-up any remaining tumor cells scattered around that the surgeon couldn't see to remove. 
  21.  We described IBC treatment yesterday. Its called a tri-modal approach. Did you understand why the 3 types of tx are all important? 
  22. Stage 4 IBC treatment is personalized. Some might not get surgery & radiation, and stay on maintenance systemic drugs forever. tri-model flow chart..jpg 
  23.  Despite the optimal IBC tx being published, 1/3 women w/ IBC do not receive good care. Article http://www.chron.com/news/houston-texas/houston/article/Study-Many-women-not-getting-correct-care-for-5682254.php 
  24.  One reason for bad care is that IBC is not taught in med school. Even textbooks on BC often only have a few paragraphs on IBC.
  25. Future IBC specialists learn IBC care specifics during residency/fellowship if they train at a high volume cntr w/ enough IBC pts.
  26. Some pathological diffs: IBC is less often ER/PR+ vs other BCs. 40% of IBCs are HER2+. 30% = triple negative (ER, PR, HER2 neg). 
  27. IBC metastatic patterns similar to other breast cancers. Bone is the most common distant site. Lung, liver and skin also very common.
  28. Triple negative IBC recurrences, when they occur are often early events
  29. On the other hand, making it past 5 years without a recurrence doesn't mean you're home free in IBC/other BCs.
  30. Accurate stats on IBC stages & recurrence are difficult to find. 1 reason = IBC lacks an ICD code, even in the new ICD10 system. 
  31. We don't know about any IBC-specific genetic predisposition genes. Regular breast cancer risk genes (BRCA1/2) are relevant in IBC. 
  32. Family history of IBC is rare - but not impossible. Prior history of other cancers not necessary for IBC diagnosis.
  33. IBC can be a second breast cancer diagnosis even if you had a prior mastectomy. Chest wall rashes may be a sign of secondary IBC. 
  34. Breastfeeding your children doesn't seem to protect you from IBC, in contrast to some other breast cancers.
  35. Healthy diets are good for maintaining a healthy weight. Obesity is a risk factor for IBC. But not all pts are overweight.
  36. Intriguing epidemiological data exist about exposure to certain viruses leading to IBC. But viral etiology is difficult to prove.
  37. Some interesting viral research examples in IBC http://www.ncbi.nlm.nih.gov/pubmed/25478862  and http://www.ncbi.nlm.nih.gov/pubmed/23418456
  38. Last few days of IBC risk factors summary: IBC like most cancers = multi-factorial. Genes, environment, behavior, luck.
  39. While IBC is still a significant problem, there is hope. We know some 20-30 year IBC survivors! Not a death sentence.
  40. The IBC Network = full-time volunteer-run charity funding research as fast as we can. Help here: http://www.theibcnetwork.org/donate 
And guess what, as of December 30th, I'm happy to share: When it comes to IBC, there's now an app for that! For Apple and Android. Wow. So impressed.


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