MARIA'S FEAR - IT DOES HAPPEN

The last time you had a cough, did it put the fear of God into you? #neverends #BCSM

— Maria Fowler (@machfowlerBC) June 10, 2015

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.

How @JoanLunden and @hodakotb made me cry even though I "expected to win" every time. http://t.co/2wPJaQHnZm #Someofusdontwin

— Maria Fowler (@machfowlerBC) September 23, 2015

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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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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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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. 

@chemobrainfog @kiragoldenberg hi AnneMarie & Kira! 😁 Give us a call & we'll be happy to help answer any questions you have ❤️ 844-OSCAR-66

— Oscar (@OscarHealth) November 12, 2015

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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