The Fault is in Our Stars and an open letter to Charles Hemenway, MD, PhD.

Dear Charles Hemenway, MD, phD & Shirley Pulawski (author of the Article New movie portrays teen cancer unrealistically, expert says),

  My children and I have been eagerly waiting for The Fault in Our Stars, authored by John Green (#TFIOS) to hit the big screen next week. To watch the trailer of this movie click here.  We have all read it. My first read was painful, I’ll admit. Throughout the entire book I found myself praying for these fictional characters to beat the odds and just pull through. Be the exception to the 46/7 rule. If you’re reading this and you are not aware of 46/7: each school day in America, 46 children are diagnosed with one form or another of pediatric cancer. FORTY SIX. That is the average of TWO plus elementary age classroom. EVERY.SINGLE. DAY. Every school day – 7 children will die. Is this a “scare” tactic? NO. It’s the truth. (If you are a detail person and really need to see my history with childhood cancer, please scroll to the very first blog post on this (my personal) blog. If it’s alarming to you, we hope that it propels you into ACTION. If you have never experienced childhood cancer in your family – how lucky you are. But know this, the day before their child received their cancer diagnosis – cancer parents were just like you. They did nothing wrong, This lottery doesn’t discriminate and all babies are entered into the lottery without your permission.

7 pairs of shoes that will be empty by the end of today.

 

First, let me dispel any of the following myths that non-supporters may form in their minds about myself and the purpose of this blog post. As you’ll see, I’ve gotten this before. I am well-equipped and well-versed with my reply.

MOST COMMON MYTH 1. I am not, repeat NOT – the mother of a cancer child. I am not “sick with grief over the death of my own child” (which therefore makes me emotional and not clearly able to process thoughts). Supporting evidence to prove this myth. 1. Both of my living children (yes, I did lose late term pregnancies; they did not have the chance to get childhood cancer) are indeed healthy and cancer free. Thank-you, Jesus! 2. I know it’s hard to believe, but there are some advocates out there who (no matter what the situation – childhood cancer, school nurse gone wrong, etc) that will do whatever it takes to ensure ALL children are safe, protected and have advocates. Of course any mother could go to prison for any violation of her own children; then there’s those like me – who could go for ANY child.

 

Now, before we begin specifically, here is another myth that I’ll dispel before your mind even goes there. MYTH: “This woman must be a physician-hater. I read somewhere she had a botched surgical procedure with life-long effects”. TRUTH: Although I did have a botched surgical procedure in 1996 and am the winner-winner-chicken-dinner of post ERCP chronic non-alcoholic pancreatitis, I have devoted the last 21 years of my professional career to the strategical implementation, marketing, build-out, launching and day to day Practice Administration of highly successful private medical practices of not only Family Practice – but also the specialities of Obstetrics & Gynecology, Interventional Pain Management, Endocrinology & Diabetes, Pulmonology & Dermatology. I am educated and well-versed in these specialties and all Federal and State Compliance Programs. It could be said, that I am one of the biggest advocates for the private practice Physician. It has been said, that I am tough to work for, but alas, numbers don’t lie and even with the slippery downward slope of medicine today, my practices bottom lines are thriving.

I am glad that has been cleared up so we can get to the heart (or the point) of this blog post. This morning, I read an article on helio.com titled “New movie portrays teen cancer unrealistically, expert says”. The expert was you, Dr. Hemenway. It has crossed my mind that perhaps Ms. Shirley Pulawski didn’t send you a draft of this article for your review prior to it’s launch. It could have happened that way, but you may review this and ask for a couple of addendums in the name of liability and all.

Dr. Hemenway, this article angered me. Not in a little way. In a BIG way. It began early in the third paragraph where you are quoted as stating that “outcomes for most pediatric cancers are much better than the movie portrays, and the types of cancer the teens experience are rare.” I absolutely can see how your background would lead to a jaded opinion such as this. But let’s tell the truth, shall we? Okay, since your work is in Hematology/Oncology research, I am going to make a laywoman’s assumption that you have vast experience in numbers pertaining to Leukemias and/or cancer of the blood. True? Okay. In fact, Doctor, the reason that the general population thinks that childhood cancer is not an epidemic problem today, is because professionals such as yourself continue to state that these cancers are “rare” and that the “overall cure rate” is 70%. You are wrong, sir. The only reason this number can even closely be somewhat this high is because all Leukemia’s are lumped into this number.  Praise God, the success rate of primary Leukemia’s is HIGH. But, let’s back those out. Now – what is the cure rate of all other childhood cancers? NOT 70%. Can you see how this can be misleading? (Yes, for your field of study, this looks fantastic (& may even lend to continued research dollars) but your point was – the movie doesn’t paint a realistic picture.) The movie isn’t portraying Leukemia. Therefore, this movie can not portray rainbows and ponies and “most kids with cancer do very well, because that makes everyone feel better”.  I challenge you to review – your numbers aren’t realistic overall either. Please, let’s be real.

Cancer is still the leading cause of death from disease among U.S. children over the ripe age of 1. Cancer kills MORE children than cystic fibrosis, muscular dystrophy, AIDS, asthma and juvenile diabetes combined. In the United States in children from birth to age 19, more than 18,000 cases of cancer are diagnosed each year. While progress against childhood cancer has been made, cure rates for most pediatric cancers remain below 40% (not 70%)! This overall number is inflated when blood cancers are included. I’d also point out that NONE of the characters in TFIOS had the dx of Leukemia, therefore your comparison that childhood cancer cure rates are 70% would NOT have applied to the cancers these three teens had.  I guess that makes this work of fiction closer to the truth than perhaps you thought?

For clarity: here are the reported most common forms of childhood cancer:

Leukemia (acute lymphoblastic leukemia and acute myeloid leukemia) – 90% cure rate

CNS, brain, and spinal cord tumors (including Medulloblastomas, Glioblastomas, DIPG) – 30% cure rate

Lymphomas, (including Hodgkin and non-Hodgkin lymphoma)

Skin cancer and melanomas

Soft tissue tumors (including rhabdomyosarcoma)
Germ cell tumors
Neuroblastoma
Bone cancers (including osteosarcoma and Ewing sarcoma)
Renal cancer (including Wilms tumor)
Retinoblastoma – (oops this is Isaac’s form of cancer, now how did that make the list since it’s so rare!)
 Since it is still May and May is brain cancer awareness month, I’ll use pediatric brain cancer as my example. It is estimated that 4,500 Pediatric cases of brain cancer are diagnosed each year in the United States alone. Do we want the public to believe that 70% of them survive? Let’s try 30% – in a good year. This example shows exactly what the problem is. 70% is a “feel good” number, but it does not apply to all subsets of childhood cancers. 30% = not winning. That’s a variance of 40%.  Mr. Green hit the nail right on the head. There is a fault in our Stars. The fault is – misleading numbers, misleading cure rates, misleading drugs and drug protocols made for adults and titrated for children. I thought I was riled at your comment “…I think it’s perhaps not appropriate to focus exclusively on that” – meaning, you felt the movie focused on the negatives of childhood cancer, but in your world the outcomes are generally good. Come on out from under that rock! But then, I read the next sentence. “According to the American Cancer Society…” then, I threw up.
 The American Cancer Society. The same one that uses beautiful photos of children in their ad campaigns with a slogan of “more birthday’s, yet gives VERY LITTLE to children with cancer? Doctor, let’s review:
Funding for pediatric cancer clinical trials has gone DOWN every year since 2003.
In 2006, the National Cancer Institute’s (NCI) federal budget was $4.6 billion.
 Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%. Childhood cancer research only gets 2.96% of the money raised by the American Cancer Society.  In dollar terms, NCI’s funding for pediatric clinical trials is $26.4 million while funding for AIDS research is $254 million, and breast cancer is $584 million. Pediatric cancer research is not only grossly under-funded by the government, it is also largely ignored by private drug companies. Pharmaceutical companies fund over 50 % of adult cancer research, but virtually nothing, nada – for kids. Pharmaceutical companies don’t commit resources to childhood cancer research because the adult cancer drug business is viewed as more profitable and less risky. Accordingly, there is an estimated $30 million a year gap in childhood cancer research funding. I have to ask, Dr. Hemenway, why would a Physician such as yourself cite the American Cancer Society as a source relating to an article on childhood cancer, when they could not give more than 2.96% care to this topic? I have read your curriculum vitae, and from the University of Massachusetts Medical School, to the University of Florida in Gainesville,  to Duke University, to Tulane in New Orleans, and finally to Loyola in Chicago. Yes, sir – I expected better sources. After all, it’s just one little online article that perhaps no one would see, and it’s not that big of a deal? Perhaps, someone in the department used your name because that pesky reporter called, AGAIN? Maybe? Clearly, your administrator would never do such a thing, nor would you sign a document you hadn’t read? (If they did, fire them).  Unfortunately, closer to the degrees of separation – I indeed have an extended family member studying pre-med/pediatrics at Loyola. So, what is my problem? Please do not impress on our youngest/newest Physicians-in-training these misleading facts and information such as the above. My unborn grandchildren are counting on these doctors to be able to appropriately identify & diagnose these “exceedingly rare” forms of childhood cancer. That’s my problem.
  For continuity purposes, you state that it is highly unlikely that the three characters would meet each other in a support group. First, because their types of cancers are exceedingly rare, and second – for teens to have them and all meet in a group would be like “lightning hitting three times”. SOMEONE CALL JIM CANTORE – lightning is striking more than three times in the same place – in my little community. Say, what? Yikes! True: Taylor Filorimo knows JoJo Siebert and Clinton Milliken. But that can’t be. Tay’s dx – Renal Cell Carcinoma (you know, “rare” and most commonly dx’s in 50+ year old adults); Clinton’s dx: Medulloblastoma (again “rare” and no where near a 70% cure rate) – and JoJo – Orbital Rhabdomyosarcoma (woah – must be rare!). Correction: these children once knew each other. Both Taylor and Clinton have passed away. JoJo is in remission and we pray, remains cancer free. This brings our survival rate to 33% of this subset of three. Lightning struck and the survival rate was no where near 70%!
   clintoncfh.jpg (636×960) jojolorilikes
  This article continues to give (me a near TIA). You are quoted as saying “Children are more emotionally resilient than the movie portrays,..My experience is that when kids are confronted with serious illnesses like this, they rise to the occasion and put the “Why Me? behind them and get on with getting better.” Phew. I can agree with you on this – children are indeed, resilient. They live in a world where all they know is to trust the adults around them. Without these adults, they have no voice. That’s where we, as American adults collectively, fail them.   Children are used to receiving instruction. So when Mom or Dad says they are going to the hospital to have their head bolted to a table, they’ll do it. They’ll giggle and laugh and right up until the very end, be ever hopeful. You see, their lives have not, until now, been tarnished by the unfairness of the world. Until now, their needs have been met. They believe like children, they innocently trust. I wonder if you’ve ever been intimately involved with a pediatric cancer patient? I don’t mean as in reviewing their chart, or a 10-15 minute bed-side encounter. More like, holding their puke buckets, accessing their ports in the middle of the night to hang their meds at home, on no sleep for the 17th month straight? Maybe, you were spending the day just playing with a just-turned-seven-year-old’s toddler brother, just dancing to the music in the car as you were driving and the little Ninja warrior sitting next to you seized and had a stroke that would, 5 days later, take his life. You see, in our world, outside of Leukemia research – this is not rare. It is not 70% successful. It’s more like that of Hazel, Augustus and Isaac, except some of these kids are younger.
  Dr. Hemenway, in no way should you take my letter as an insult toward your efforts in the research of Leukemia or any Hematology research. I have a little guy in my life, Keeton – that I adore and who’s diagnosis is designer genes and Leukemia. He is doing well! But, if we’re going to act as consummate professionals, we would mention that the very gene mutations that lend toward DS – make them more likely to get Leukemia, but also – gives them a clear advantage to beat their cancer. Amazing! But not really an attribute of our diligence towards the cure rate of childhood cancer. I would applaud and support any efforts to improving ANY cure rate for ANY childhood cancer subset. I do not support an esteemed professional such as yourself by making statements that strokes parents and/or the general population into believing that childhood cancer isn’t all that bad. I know it makes everyone feel better. The childhood cancer world does not need empathy. They need ACTION. Childhood Cancer isn’t all that bad, it’s much much worse. (We didn’t even touch on the lasting implications, emotional cost, divorce rates of cancer parents, financial out-of-pocket costs to families that are most often led to financial ruin, etc.). I am also very certain, that before commenting above, you did your research and you knew that John Green wrote this amazing piece of fiction based on inspiration of his friend, Esther Earl. Esther did have metastasized thyroid cancer and died from it (what, lightning struck in her town too?). It is NOT uncommon for children/teens to die from cancer, from the treatments of cancer, or from the long-term side effects following cancer treatment. I wish the general population of the world would be a lot more panicked rather than leave a childhood cancer encounter with a whimsical sing-songy heart  because someone painted a picture of happy, smiling bald-headed children who live in a fairy tale world of 70% cure rates. Although they are amazingly cute, this is not their reality.
(To learn more about Esther Earl’s foundation click here).
 You see, Doctor, There is a fault in our Stars. It is us.
In closing, I am THRILLED that the movie is coming out. You’re right, it’s not 100% accurate as it is a work of fiction. The real truth is far too hard for most to handle. Why does this make me jump for joy? Because in store fronts of every mall around the world – The Fault in our Stars ad displays are up. Childhood Cancer is getting attention. It’s easy for the world to turn away when they are not aware. Now, they are. No excuses.
Respectfully,
Lori Woodard-Hoyt
Murfreesboro, TN
Link to original article: here
Have no fear. When adult “talk is bullshit”, a little child will lead us.
To see the message from the amazing Gabriella and the Truth 365 click here. Do not miss footage starting at second 57. What did it take for the President of the United States to listen? A 10-year old.
Visit Gabriella’s foundation by clicking here.
There are so many amazing foundations. If you take nothing away from this other than this pearl – KNOW where your money/donations go. Many of them are small grass roots foundations just trying to find the funds to get kids in their outreach treatment, expenses, and a little bit of joy. I apologize in advance if I leave someone out, but here is a list of non-profits that my personal funds support.
Clinton’s Club – http://www.clintonsclub.org
Liv 4 Tay Foundation – http://www.live4tay.net
Peach’s Neet Feet – http://www.peachsneetfeet.com
Jessie Rees Foundation – http://www.joyjars.negu.org
Ronald McDonald House – Nashville – www.rmhcnashville.com
Team JoJo – www.teamjojo.com
Alex’s Lemonade Stand Foundation – www.alexslemonade.org
Disclaimer: the views above are expressly mine. John Green, nor any foundation or organization above have endorsed, nor reviewed my personal opinions. To read more about my personal opinions, search this blog site for Clinton Milliken, Equality, 46/7 or childhood cancer. There are a few.

Clinton Mabry Milliken and two years

Image

Today (January 19, 2014) is no different from any other day since January 19, 2012. Two years seem like forever when it’s a rough moment. Two years seem like a nanosecond when it was the total time you got with an extra special little boy. Just another day to remember an incredible kid who irrevocably changed my world and the world of so many others.

I have had time to develop my list of Clinton lesson’s. Some days I refer to them as “The Clinton experience” because it is almost surreal. I have always believed life is full of paradigm shifts (ie – ideas that may be more or less fashionable during any given period of time, but all regarded as legitimate), I just tend to be on the side of those that believe without seeing much quicker than others.

The world thinks – the best educations are obtained from Ivy league schools with the most astute professors. Not to be argued, but no one can discount lessons taught by a 7-year-old who had only just completed Kindergarten (and half a year of Kinder-grader. That is – part K and part 1st grade in one day).

Clinton taught me –
– patience and kindness on a different and more meaningful level.
– to realize that there really are people who do not deserve my time.
– to push boundaries – almost to the illegal point. (No – wait, allowing a then 6-year-old to drive may have been – technically, illegal.). Prove it. Then, arrest me.

The world needs to know that once you survive the loss of a child, it's got NOTHING.

The world needs to know that once you survive the loss of a child, it’s got NOTHING.

– that my professional work and some people “very close” to me – needed me more far more than I needed them, and that they would never be capable of respecting me nor my decisions. It was an ouch moment.
– to stop trying to please those who could never be pleased, but to instead focus that energy on those who need and are grateful for my voice, time and talent.
– that the world STINKS at second chances and that so many judge other’s decisions, yet have no clue what it’s like to make decisions even close to the levity that they are judging.
– how to lose gracefully. I’m really bad at this. Yet, to compete like I would win and never ever give up the hope of winning until your Momma tells you it’s okay to stop.
– how to keep going when everyone except your biggest cheerleaders say you will fail.
– he sealed my belief that the world needs to pay more attention to the wisdom and resiliency of children. Especially children faced with the most agonizing circumstances. Of course, bald-headed kids – but also the children of Africa, orphans – or any war-torn area. Watch them find pure happiness and joy in the simplest of things. It will change you and your ideals of what you think you need.

It’s not just myself that this boy taught. I could never tell and retell the numerous people (complete strangers, never having met Clinton) tell us how he changed their life. It still blows our minds.

I read a quote recently (paraphrasing) that a person actually dies twice. The first time – when their heart stops beating. A second and final time when no one speaks their name. Clinton’s second time is not happening.

It’s just not.

c laughing

Please remember me.

Fit for a King

Fit for a King

Want to see some awesomeness? Click away:

https://www.youtube.com/watch?v=lj8QqAP-Phg

https://www.youtube.com/watch?v=rAvcMrPkkK0

https://www.youtube.com/watch?v=yN9wpeflqgA

www.clintonsclub.org

Above all, Clinton wished that Cancer kids, could “just be normal kids”.  Admittedly, I was not 46/7 aware before Clinton. Childhood Cancer is killing our children far faster and in more number than any other single disease, incident (think terrorism), etc. As Americans, we seem to not care that our federally funded Cancer research dollars are allocated in such disproportion that we spend 99 cents of every dollar on fighting ADULT cancer and one penny of every dollar to childhood cancer. If this means nothing to you – I challenge you to spend 99% of your family’s income on yourself and 1% on your kids and see how long before child protective service visits your home – and takes your children away. Just think. Then DO something. (Please, research those non-profits you give to. Just because they use smiling little bald-headed kids in their marketing, does not mean they give to children). Legend has it, I was known to throw a few breath-holding-until-I-got-my-way fits when I was little. Being the baby and all. Loving a Cancer kid has taken this skill to a whole new level. Childhood Cancer Caucus – you’ve been warned. Since the Clinton experience, I have added a few hundred more children to my list of advocacy. I’ve got your number, I see your little lies. You’ve had a good run at hiding the numbers of incident by labeling childhood cancers – rare. Yeah, we’re not that stupid – anymore. Until you come up with names that distinguish the different types of breast or prostate cancer – you are no longer allowed to call the “rare” childhood cancers – names like: Medulloblastoma, Leukemia, Neuroblastoma, Renal Cell Carcinoma, Wilms, Rhabdomyosarcoma,Retinoblastoma, Osteosarcoma, Ewing Sacroma, etc. To do this and then tell the world that childhood cancers are rare is a lie. Add em up. Then tell the world that the parents of kids with cancer did nothing wrong. Be sure to also let the world know that most (no not all, no hate mail, please) of adult cancers are the result of personal choices. This is not like the idiom of comparing apples to oranges. This is more like comparing apples to – deep-fried-chocolate-dipped-bacon. 

https://woodardgirl.com/2012/02/09/my-sweet-sweet-clinton/

Just a little glitch…

“Good morning, America, how are you? Don’t you know me, I’m your native son” – Steve Goodman, 1970

First, let me share a fantastic Facebook post from early this morning. I felt it worth not only a share, but a blog post to a few hundred thousand of my friends (and with their help, a few million or more). The post below was made by Dr. Brent Boles who privately practices obstetrics and gynecology in Murfreesboro, TN.  Dr. Boles is not only a fantastic, extremely talented Physician, he is also one of MY Physicians and we know how great/easy of a patient I am. I copied and pasted his post from my Facebook timeline:

Brent Boles, MD ~ Covenant Healthcare for Women

Brent Boles, MD ~ Covenant Healthcare for Women

Brent Boles
So yesterday’s rollout of the healthcare exchange website was filled with glitches. The White House compared the issues with Apple’s issues with the rollout of new technology. Who does he think he’s kidding? HHS Sec Sebelius said the glitches were a good thing because there is demand for the product. Wow. The site was overwhelmed with fewer than three million visitors-and we are supposed to be confident that the government will competently manage a system that will one day provide care for 300 million? Here’s one ‘glitch’ that no one is discussing. When a new health plan hits the market, the company running it has already built a network of providers by contacting all the doctors in the target area and offering them contracts and getting those interested credentialed and ready to see their newly covered clients. Do you know how many of the new exchange plans have contacted me to see if I will accept their patients? Not one.  There are over three hundred doctors in my community and do you know how many of them have been contracted by the new plans? Not one…. Where are all these newly covered patients going to get their care? That’s a good question.  It is also perhaps the biggest ‘glitch’.”
(You may visit his website at http://www.covenanthealthcareforwomen.com/)
 Initially, I posted a reply on his facebook that reads “I’ll offer my 16 year healthcare consultant advice for free here. They won’t. They’ll package it sweetly into a silent PPO (which they already try), or a TPP, and the health insurance ID cards will be inconspicuous so the staff thinks it a MCO you are already par with. IF they do offer a contract, here’s how we pregnant
negotiate this one. “NO” It’s a complete sentence. Reminds me of the former tort reform joke! Start advertising

now . . . “Who in Rutherford County will deliver your baby?”

Of course, my brain has been turning and burning since I read this. Dr. Boles’ point is valid. Critical. Crucial.  I have been in the business of strategically managing the non-clinical side of private practice healthcare now for 16 years (eek!). I still have  consulting contact with (to my count) 37 Physicians. Of those that I currently step foot into their practice locations, NONE of them have been contacted to credential with any of the plans under the new Healthcare exchange plans. ZERO.  But, then, I thought – well, perhaps it’s because they are Medicare providers. But some I know, are not.  Let me email those. In the last 6 hours, all but 1 of them have replied to my email with one word “No”.  Well then, America – who exactly are these mystery Physicians who will deliver this new healthcare for all? The money you pay in for that service is paying for what? Paying whom? Physicians: READ THIS. If you are a current Medicare provider, they have already enrolled you. If they underwrite with another plan that you participate with – beware of the silent PPO game, or the TPP game that re-prices your contracts without approval nor agreement like they can, and just say NO. You can not see a patient for $38 and pay your staff! Of course, if you need someone to negotiate your contracts, or fill out your opt-out form via PECOS, call me. It. Makes. My. Day.
  Consumers: let’s review. The money you and/your employer pays into an insurance company (be it commercial or mandated government exchange) is a contract between YOU and that company that you are paying for a service.  Let’s say it’s $800 per month. Part of this $800 is paid by your payroll deduction (out of your pocket), some by your company (total compensation package). Okay, so you pay the tree of life or big blue $800 per month and you go to the doctor once that month. You pay a $40 co-pay and they pay your doctor – perhaps, an additional $49. $49 for your $800? But wait, that is only IF your ever-increasing deductible has been met first. (Still receiving $800 per month while you meet your deductible, they pay nothing until you reach this magic number & $1500-$5000 is now the norm in America). By the way, if you have not met your deductible, your Physician will bill for your service rendered in good faith, and will receive ZERO. Then, in 45 days or so, you’ll get a bill from your doctor. For some reason, most patients feel they should pay their doctor last, or a few dollars per month. Not me! I was gifted with a chronic illness by Walter Reed Army Medical Center, therefore, I pay my Physicians – first. When this happens, smart savvy practices, say, no more services until the medical bill is paid. Does not feel good, but is necessary to run a business.
Practice_Performance_Graphic_1
  Next you say, “self, let’s look at my healthcare insurance companies public listed earnings”. Say what? 2mil in BONUS to CEO’s? Yes, now let’s blame the Physician!  Did you pass 3rd grade math?  While we’re on this topic – quick, go grab your most recent “EOB: Explanation of Benefits” Some of them list CPT codes (Current Procedural Terminology), which must be used by Physicians to bill for the service they provided to you. In order to do that, they have to first purchase expensive Electronic Medical Record (EMR) systems (and we are talking $30-$80k!), learn the CPT codes that change with no notice (and most often do not even match what they did), pay a medical biller to pre-cert your visit by calling your insurance company where a non clinically trained non-English speaking person in India will answer the phone and either “approve” or “deny” your visit. When they deny, the doctor will pay his staff to call the healthcare insurance companies CUSTOMER to tell them no. The Physician has collected zero. He or she also has paid out an estimated $34 in staff costs to get to this point (not counting EMR software, their own training nor their electric bill). Patient has no care. Lose-Lose-Win. (Doctor-Patient-Healthcare Insurance Company). Here is where we have it all wrong.  Patients/consumers: do NOT allow someone you pay a service to dictate your Physician’s treatment plan. Call them and ask them what service they are providing you for your money. They work for YOU. Let’s say they approve your treatment. It might look like this: Your doctor billed $130 for your annual well-woman exam, and your insurance company might-have-would-have-could-have paid $65, but you owe a $40 co-pay. After the billing department argues that yes, it was indeed one year and one day since your last well-woman exam, your doctor will get a check for $25.  Physicians: an insurance company may say no  but this means no to only to payment on behalf of THEIR customer – not to your treatment plan of YOUR patient. Feel free to use my best script ever (insert whatever procedure you are trying to get covered). Insurance rep: “no cover for a that a service”. Biller “what?”, Insurance rep: “let me transfer you to appeal department”. Biller “Practice Administrator – please pick up this call before I lose my mind”….wait on hold so long you forget who you were holding for…..then – “hello, yes, I am calling to get pre-approval for an in office obstetric ultra-sound”….Insurance appeal-or “I’m sorry, the member must report to ______ radiology for this scan. In office is NOT approved nor medically necessary and the patient may not have it”. Practice Administrator (okay, me) – “It will certainly be my pleasure to let your member know that you are failing to provide a service to her unborn child with whom she pays you for, and that her highly skilled Physician believes it critical because of this (insert diagnosis). But I understand, you are just doing your job. Now, I will do mine. What is your fax number? Yes, I need to fax you a consent form that will transfer the medical liability of both the patient and her baby to your company, because for the next two hours that she will have to wait to be scanned, my medically trained and board-certified ACOG fellow believes that her unborn babies life is at risk and I will not allow him to be responsible for your lack of concern or coverage…..yes, I have a pen handy for that approval number for in-office ultra-sound. Have a great day”.   Work out a self pay rate for your patient and provide them with care. Look at fee for service models. Maybe then, patients will carry catastrophic only plans that pay for hospital stays, surgery, etc. After all, you gave up your 20’s and no one helped you pay for your medical school. Read this section on how to “opt-out” of this nightmare if you are a current Medicare provider:

“…(b) Establishment of a Provider Network-  (1) IN GENERAL- Health care providers (including physicians and hospitals) participating in Medicare are participating providers in the public health insurance option unless they opt out in a process established by the Secretary consistent with this subsection.  (2) REQUIREMENTS FOR OPT-OUT PROCESS- Under the process established under paragraph (1)–

  (A) providers described in such subparagraph shall be provided at least a 1-year period prior to the first day of Y1 to opt out of participating in the public health insurance option;

  (B) no provider shall be subject to a penalty for not participating in the public health insurance option;

  (C) the Secretary shall include information on how providers participating in Medicare who chose to opt out of participating in the public health insurance option may opt back in; and

  (D) there shall be an annual enrollment period in which providers may decide whether to participate in the public health insurance option.

  (3) RULEMAKING- Not later than 18 months before the first day of Y1, the Secretary shall promulgate rules (pursuant to notice and comment) for the process described in paragraph (1).

  (c) Limitations on Review- There shall be no administrative or judicial review of a payment rate or methodology established under this section or under section 224.”

  Since the HMO’s saved us all – I feel quite confident that this new Affordable Care Act will work exceptionally well. Here’s what exceptionally well looks like in my opinion: There are always Physician’s who graduate in the bottom of their class, and who are not board certified (lest we suggest, double-boarded) who will bend over and take these bottom feeder plans and rates. They will look like the current Medicaid practices that we all know and can name for each locale. Locations that most of us would never step foot in.
  If it were funny, I might have laughed at our highly intelligent and most competent government writer’s use of language in the employer categories. Smallest employer group (10 or less); Smaller (less than 20 more than 10)….Sesame Street did them good too! (Hint: this will force smaller companies to become smallest companies and let go of half of their employees to qualify.)
 GO GOLD
  One last point for good measure. Childhood Cancer Warriors: are you aware that HB 3200 also outlines when and how the government can decide if cancer treatment is approved? First, we know what our current government thinks of childhood cancer (1 penny of every dollar allocated), so we can imagine where that leaves the decision of how this plan will decide to approve childhood cancer treatments. This plan, however, goes further – if over the age of 76, Cancer treatments will not be covered. I guess we should just bury everyone at 75.  Think it’s not already happening? Really? Ought to call a friend of mine in TX. Single mother, age about mid forties – can not get her cancer treatment approved because “it will probably just come back”.
 So, how will private practices survive? Without strategically fantastic professionally trained medical practice administrators, they will not.  Wise Physicians recognize that the business side of the house is as important as the clinical. I visit so many practices where (when we had paper medical records) – the medical records clerk stayed long enough to work at the front desk. Then she worked there long enough to become the front office manager – and if they were lucky – stayed long enough to be promoted to the practice manager.  The positives are – she’s loyal, knows the business well, and can speak words just as the Physicians might, knows the patients and has a cheerful sing-song voice.  The bad news is – she most likely can not save you. Obama care and some before him,  has put the practice of medicine in peril.  Without strategic planning, forecasting, cash flow acceleration, a close eye on compliance plans (this year alone, major changes in (T)OSHA, OIG, HIPAA Privacy/OMNIBUS, HIPAA Security, HITECH, e-verify, New Hire Registry, State licensure, Sunshine Act, CLIA, COLA, EEOC, DOL, Meaningful Use, STARK, and we barely survived e-scribe) as well as the trickery contained there-in, private practices will not survive. Remember those Electronic Medical Record (EMR) incentives they promised if you just spent $60k on all the software, hardware and training? You know, the little big-brother game of “Meaningful Use”? Yeah. Well, they got their data – which they then used for the Affordable Care Act, and now the coffers are dry. SHOCKER. At least the practices that I had oversight of got $15k for year 1 stage 1. This will pay for the paper we had to purchase in a paperless EMR environment.   That in and of itself might just kill me. Somewhere in Maryland there is a time capsule. In which has a piece of paper where I called this day back in 2003 when I had just watched in disbelief a failed tort reform. I wrote something along the lines of “healthcare in America – will become one of the “haves” and the “have not’s, be sure to be on the side that has (and I am not talking about money)”. One could say, I am ever so slightly, pro-physician. Why? Because socialized healthcare is NOT a good thing and there are so many great Physicians out there who could and do make a difference every single day.  They are simply giving up in alarming numbers because their every move is dictated by policy makers that have no medical training. We have to do something or we are going to lose them. But, it’s all good in the hood, right? No one needs a doctor anyhow! Until something goes WRONG. 
To read HB 3200 in all it’s glory http://www.govtrack.us/congress/bills/111/hr3200/text. Please read it. The above are highlights from simply the first 500 pages of the Healthcare bill. Contact your Representatives and let them know how you feel about this. We, as a country, cannot afford another 1000 page bill to go through congress without being read. Another 500 pages to go for me!
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America, WAKE UP.
Tiny disclaimer: the thoughts above are not those of Dr. Brent Boles, nor any current, past or future private practice physicians. They are mine alone. Those of you whose blood may have almost boiled, don’t even yell STARK. No contractual information has been disclosed.

Advocacy

 Very early this morning, before coffee #2, even, I was asked a question that stopped me in my tracks. For those of you who REALLY know me, yes, this CAN happen. I do not believe it was a malicious question, but not very thoughtful. I was asked why I was still “so involved” in childhood cancer, and I quote “since Clinton was already gone”.

I promise, dude.

I promise, dude.

 I’m sure I stunned this person when without hesitation I asked “have you ever had a 6 year old look you in the eye and ask you to promise him that you would “help his friends just be like normal kids”? A 6 yr old who chose happiness, laughter, random acts of kindness – and planned for his future every single day, even though he knew his body was betraying him? I know highly educated and well-traveled adults who fail to “get” this.

  Since this encounter, I have gone on with my day – but have experienced every range of human emotion. My best answers are:
~I advocate because it’s the right thing to do.
~I advocate because my peers are not doing enough and I am ashamed of us.
~I advocate, with no compensation, because decision makers find it hard to take grieving parents seriously, most physicians are doing the best they can with the tools they have,  and I can provide an “as close” as possible 3rd party assessment of the truth from all sides. Collectively,  we are failing these families.
~I advocate because I believe true judgement will come from things I could have done, but chose not to – or found an excuse not to do.
~I advocate because I hate – hate – hate to lose.
~I advocate because I have children, and you have children, and someday – far far from now, I will have grandchildren.
~I advocate because I love Keeton, Alyssa, Nick, Leah, Sadie, Ireland, Bishop, Emily, JoJo,Casey, Mark Kelly and so many more.
~I advocate because there is not an hour of each day that I do not think of Clinton, JC, AJ, Noah, Savannah, Tay, Talia, Jessie, Ronan – and so many more in addition to the 7 children who will die today.
~I advocate for all the children who are healthy today – but tomorrow could be catapulted into toxins being pumped into their bodies, yet they never smoked, sun-tanned, fought a war – or even worked in a place that had carcinogenic chemicals.
~I advocate because I know what is over my head, is under God’s feet.

Until you have experienced something like the photo below, you may never understand. I pray you never do.

Where there is the slightest chance at life, there is Hope.

Where there is the slightest chance at life, there is Hope.

 I will be at the next Childhood Cancer Caucus in Washington, DC -and rumor has it – that as the baby of the family – I will be heard, and will stomp my feet if I do not get my way. My tantrums are ugly.

So – please, do not ever ask me this question – ever again.

If you would like to visit foundation websites I love and that make a difference – every single day,  visit:

www.clintonsclub.org

www.live4tay.com

www.negu.org

www.peachsneetfeet.com

www.alexslemonade.org

www.stbaldricks.org

www.rockstarronan.com

* Note: these are my personal thoughts and not meant to be the reflection, mission or endorsement from any of the above foundations. -LLW

Inequality in America

 
GO GOLD

 GOLD

    Many Cancer fighting families and the Physicians who treat them – think that last year our Nation spent $122 million,  let’s say – on the research of one Pediatric (kids) cancer, specifically, Non-Hodgkin’s Lymphoma, and $631 million on just one adult cancer (breast), because kids are not old enough to vote and therefore politicians do not have to answer to kids. I personally have heard these words spoken on too many occasions over the last 3 years. This is complete rubbish. The cancer kid’s parents vote. Their older-than-18 extended families and biggest cheerleaders – vote. But we have a history of asking politicians the wrong questions. What IS on their platform? I made a promise to a cheeky 7 year old, from that day forward – I would know these things, and whether or not my representatives, congressional members and/or anyone I vote for ever – has childhood cancer research on their platform. If it is not even on their radar, they are not on mine. To be on mine they will need to so some research and see what we can do to right this injustice. No, I do not mean lip service. I like written plans. I’ll need to see those too before you get my vote.

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The King

 I challenge local, state and federal legislators to discover why “everyone” says it is big Pharma’s fault that there has only been one new pediatric drug released in over 20 years on the market. “Everyone” says that big Pharma does not develop/manufacture new drugs for kids because they will not make money off pediatric drugs. WRONG! First, drug companies have very savvy business and marketing development leaders – and second – this subsection of consumers has 46 new customers every single day. The parents of these kids and those who love them most (and even complete strangers) will find the funds necessary to treat/cure-  if the drugs that were needed – were out there. We’ve raised hundreds of thousands of dollars for local kids to get to watered down adult treatment centers across the nation – and sometimes out of the country – because it’s the best option we have. Last – the drug companies are already making money off kids with cancer, but they are not earning a good reputation when their drugs are watered down to a kid dose – have horrific side effects and the kid still dies.  I have spoken directly to – and have had incredible conversations with the leaders in “big Pharma”. They have so many amazing potential kid-friendly drugs on the cusp – but they have difficulty getting governmental approval relating to the research/outcome protocols for Pediatric drugs. Now why would our government do that? Because they only want to fund/grant programs that have good outcomes – and they are doing a bang-up job with that across the board aren’t they? The governmental guidelines are too stringent and they only chose the studies with a very high chance of a great outcome (read propaganda garbage). The only drugs to survive this review are made for adults. It’s just not the American way – to take the easy road.  It doesn’t make me feel better about  myself and our government at the end of the day – and it shouldn’t you either.

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Follow us to the clubhouse. Where cancer kids can be “normal” kids, even for just a few hours.

 I have worked for over two decades in healthcare and I have a special place in my heart for women’s healthcare. My true passion has always been in this field and I have been blown away by the advances. 21 years ago (and even more recent than that) – a breast cancer diagnosis delivered was almost a death sentence. Today, many women work throughout their entire treatment plan without missing much time from work. Am I angry about that? NO. Please do not misunderstand the semantics of my words. I rejoice in the news that yet another woman has beat this monster. I have two very good friends who have breast cancer right now – and whom I love dearly. I have spoken to both of them on this very subject. They themselves – cannot believe the  treatment options they have compared to the non-existing options for children. I do not want the pink ribbon to go away (unless we abolish breast cancer) – but it should not be that hard to equally see the GOLD ribbon about. Pink is big in October, and every other month.  Awareness works – and the pink ribbon campaign has proven this. GOLD needs to work just the same. September is THEIR month. Let’s see some GOLD. Own a business? Cover it in GOLD this September. Allow Clinton’s Club (www.clintonsclub.org) to place an awareness poster in your storefront – or host an event. You do not need money to do this. Donate your social media presence – even an hour a day can make a big difference. Think you can’t make a difference because you have no money? Wrong. Go to Google, select Google images. In the Search bar type “Clinton’s club”. As of this morning, the first 5 images you will find are either sweet Clinton himself – or a highly viewed photo tagged to Clinton.  I am SO SORRY Bill and Hilary, “I have  never had”…intentions to squeeze you off this page. I did partake in ousting Michelle Obama as the #1 trending hash tag for Nashville, TN the week we squeezed her to #2. It was a small week – in this country we call it – re-election week, in a decade where social media – clearly won an election.  I believe it went something like this #pray4tay.   

Tay

Click photo to go to Tay’s site

 One last note to local community leaders, business owners and legislators perhaps you have been fortunate enough to never personally experience childhood cancer. I pray you never do. But if you are one that clicks fast over another bald kids photo or social media awareness page, stop it. We are not looking for nor asking for empathy. We are so sorry that it makes you sad, or maybe even brings you to tears.  We have enough sympathy – we do not need that. We want you to know that ignoring this fact IS impacting the economic growth and development of our community. I’ll use Rutherford County, TN as an example. I personally know NINE local families who have health insurance and who have to spend $40k or more per year out-of-pocket to obtain necessary care for their kids. This does not count counseling for siblings, care for siblings, etc. It doesn’t affect us right? Well, one parent works for Nissan and continues to miss a lot of work to travel out of the local area for Neuroblastoma care (certain this impacts the production line); one works in healthcare herself – and the staff at her work missed an entire day to attend the funeral of her 7-year old. (only 40 patients didn’t receive their scheduled healthcare in RuCo that day, in a critical field that can have many social consequences); one owns her own business that was once thriving and is now nearly closed; ALL of them have gone from a two family income to one, or a single parent who once worked full-time to not working just so one parent can be with the child 24/7. Many have filed bankruptcy. Almost all – have or will be filing for divorce. Our children will most likely have a classmate during their primary school years who has cancer. If your child or grandchild comes home talking about a “monkey in their chair” the monkey represents their classmate who is out of school because of cancer. They will ask you for a few extra dollars to buy a plastic band with their classmates name on it to wear. Some schools ban these bands as not being a violation of dress code. So – yes, if affects us all. Emotionally, Cognitively, Socially, Economically. So, if you ask me how concerned I am about a new conference center and it’s ability for RuCo to compete in an economic arena – I might discuss this with you after you convince me that you have a plan that will really make a difference in the lives of the people who live and work here.

cfhems

Click to see one of the sweetest faces ever. xxEmxx

 I hope you have your thinking caps on. I hope you do more than just think. Imagine, if tomorrow – a terrorist (foreign or home-grown) walked into Siegel elementary and killed 7 innocent children sitting in their classroom. We’d see action. But that’s not quite the right analogy to use. First, we’d have to gather up all of those who love these 7 children – and force them to watch them be tortured over the next year to several – knowing they will die anyhow. What would we do about that? No, this is not shock marketing, this is the truth. A quick visit to the Pediatric Oncology floor at Vanderbilt today – will prove, The floor is full and there are two kids who’s healthcare is at risk as they “wait” in a germ incubator we call the ER. They are waiting because the rooms are full. They shouldn’t have to wait more than 24 hours. Adult Oncology floor has beds immediately available.

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Murfreesboro’s own sweet girl & Color’s For Hope – Leah Bee. Fighting Neuroblastoma like a BOSS