Oct

01

Posted by : admin | On : October 1, 2010

It is hard to believe that it has been five years since the day I was diagnosed with a pediatric brain tumor. I leaped off the cliff and had brain surgery at age 25 and I still struggle daily with the after-effects. Nevertheless, I remain hopeful and resolute in my decision to survive and live a long and happy life.  Over the course of these years, I have found great fulfillment with my involvement with the Children’s Brain Tumor Foundation (CBTF), and have the honor of serving on the foundation’s board.

By overcominga a dire brain tumor prognosis, I came out stronger and deeply committed to help others who need it most. Every day nine families across America learn their child has a brain or spinal cord tumor, but only six will transition to survivorship. Pediatric brain and spinal cord tumors remain the toughest children’s disease. These kids often endure not only intense surgical procedures but also extensive chemotherapy and radiation treatments. Not only does this disease often confine children and parents to long hospitals stays, it also greatly impacts the life of their entire family.

This year, for the 22nd time, the Children’s Brain Tumor Foundation has reserved the Big Apple Circus on Sunday, October 24th so the children and families we serve- and you– can join us for a fun and laughter-filled afternoon. Please join us in making this CBTF day at the circus, the 22nd Annual, unforgettable! We need your help in reaching our goal of raising $150,000 to recognize this important milestone.

A day at the Big Apple Circus offers a welcome reprieve for children and families. It’s an opportunity for them to enjoy a day of cheerful fun and entertainment with other kids and families dealing with the same disease and its after-affects. What’s more wonderful than a child wide-eyed at the sight of clowns and circus animals in the center ring?

Your sponsorship of a child or a whole family will make this day a memorable one for hundreds of children and families. Proceeds will also support other quality-of-life programs we provide for children and families including education and research.

I want you and your family to join the fun! You can sponsor a child or family and order your tickets too.

You can donate now online or at www.akivazablocki.com.

All donations large and small go a very long way.

Thanks for your continuing support and for your help on this special day!

Akiva (A.K.A., iPatchMan)

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Sep

29

Posted by : admin | On : September 29, 2010

This blog post has been featured on the healthcare social media blog Health2Social and has been re-posted here.

A recent WSJ Health Blog post titled “Unraveling Why Patients Don’t Take Their Meds? argues that one reason patients stop taking their medications is the negative side effects they may experience. The post mentions some astonishing reasons for the lack of drug compliance. The blog mentioned that a recent study by the New England Healthcare Institute (NEHI), which brought together experts on patient medication adherence found that “there are many reasons besides side effects that patients don’t take their medicine: cost, the challenge of managing multiple prescriptions, cultural issues, forgetfulness and a reduced sense of urgency if they don’t feel any symptoms.” The article also mentioned that “an estimated one half to one-third of Americans don’t take their medications as prescribed by their doctors . . . contributing to about $290 billion a year in avoidable medical spending including excess hospitalizations.”

I find this quite amazing to believe. I agree that negative side effects may be the main reason patients stop their medications, but this, and the other reasons listed seem to be only dwarfed by the bigger issue. As I had mentioned in a previous post: Working as a spy for a secret agency; Decoding Healthcare’s Elusive Prescription Dilemma, trying to read your prescription and figure out what one is taking, what dosage, and why, is like trying to decode a secret message between the doctor and pharmacist.

Yes, all the reasons motioned above are true, but most of them can be solved by better patient education, more time spent with the patient encouraging Q&A, and a clearer prescription system that is inclusive of the patient, rather than secretive and exclusive. Only by educating patients and encouraging their questions, can doctors provide their patients with the tools to take control of their own health.  As Thomas Goetz, executive editor of Wired Magazine, and author of The Decision Tree, points out over and over in his book, being in control of your health actually increases your health (as seen from the British Whitehall Study from 1967). If physicians empowered their patients by education and clear communication, patients would feel more control over their health, thereby leading to better health outcomes.

The WSJ post does mention that “simplified drug regimens, better patient education and closer monitoring of patients on medication by case managers” are part of the proposed solutions. I think these are great proposals, and a better use of those $290 billion wasted should go to compensating primary care providers to spend more time education the patient, including them in the prescribing process, and following up with their patients on drug regiments.

Another solution is to create a more social aspect of medication compliance. As noted from the wildly successful Weight Watchers program, mainly as a result of the social network aspect (support groups, similar to AA meetings). We at Health2Social would like to see more socially engaged programs related to medication adherence. If patients agree to sign off on a medical release, physicians can connect them with others who have the same diagnosis and are on similar medications. You then can create everything from a buddy system to actual support groups (moderated by a healthcare provider) to enhance the overall engagements in one’s health, and increase adherence.

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Jul

19

Posted by : admin | On : July 19, 2010

Much has been said about the amazing new uses one can find for their DropBox. From setting yourself free from the risk of losing your USB thumb drive and effortlessly syncing and backing up your photos, to “15 Awesome Dropbox Tips and Tricks,” DropBox has found many uses for the free 2GB of cloud storage. One new use that is emerging is that of a Personal Health Record, or PHR. The Obama administration is investing billions in electronic health records and many startup companies are hoping to get part of that stimulus by creating PHR and other electronic health records (HER) systems. Google, Microsoft and Dossia have emerged as leaders in the PHR/HER arena with their Google Health and Microsoft HealthVault. These tools synch with many other online health sites like Livestrong’s Calorie and workout tracker or your local pharmacy. However, you still have to spend the time scanning and uploading doctors’ notes and test results into your online account. Personally I feel that if I am already scanning all paper notes and test results into my computer, I want to have more direct and personal control over them. With DropBox I can easily place all PDF versions of my medical records into folders for each provider. The files sync automatically with DropBox and I can access them from any computer in the world as well as my iPhone (through the DropBox app). It is not 100% clear if storing your medical records in DropBox is HIPPA compliant. It looks like most of the requirements have been met but an argument can be made that one requirement is still missing is private keys, so that the DropBox team does not have access to the files if you need support. Either way, for personal use, one does not need to follow HIPPA, rather only if your provider wanted to use DropBox as your EHR might they run into problems. Still, this does not mean you cannot share your medical records with physicians, as it would be similar to using email to forward a note or test result. For now, and for lack of a better option, I find it very easy to use DropBox as my PHR and to have access to all my medical records on the go, and no matter where I go.

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Jul

04

Posted by : admin | On : July 4, 2010


The man in the cloak hands me a small piece of blue paper with an unidentified scribble on it filled with code names and numbers. “Quick,” he says, “ go give this to the man in the little window in the corner store on 102nd and Broadway and wait for further instructions,” says the cloaked man and sends me on my way. Without looking at the note, I fold it twice and place it in my back pocket and hurry over to the drop-off location.

I enter discreetly into the dimly lit store and look around me. “If I hurry, I can make it to the small window without getting noticed,” I think to myself, and hurry down the aisle. “Can I help you?” says an unfriendly and tired looking face from behind the small widow. Without thinking twice I hand him the small folded piece of paper with the secret code. “Hmm,” says the man. “Come back in twenty minutes, and don’t be late!”

I run off, and hide on a bench around the corner, I feel faint, hot and lightheaded, worrying and thinking about the outcome of this drop off. Twenty minutes later, I am standing again in front of the man, sweating and shaking. The man hands me a small vial and whispers to me: “Take three drops of this twice a day for week.” I take the vial from his hand, and garner the courage to ask the frightening man “and the note I gave you? What did it say?”

“That is not your concern,” says the man, as he shuts the small window door.

I walk off silently and ponder this whole clandestine transaction I involved myself in. “Is there another way?” I ask.

Stephen Wilkins, MPH, the Author of the blog Mind the Gap states that research has shown that “36% of patients did not know the name of the medication they were given, 36% of patients did not know what the new medication was supposed to do, and 44% did not know the proper dosage instructions for the new medication.”

These are amazing findings, on their own, but this points to another problem, one that is in the process of filling the script in the first place. We do not know what is written on the “small piece of blue paper with a unidentified scribble” and do not get a copy of it back from the pharmacist, so we do not know whether it was filled correctly.

Three months ago, after having corrective eye surgery, I filled a script for glasses with a prism. I am still suffering from double vision, and these glasses were meant to help me see one picture. My doctor took the time to explain to me the purpose of the prism glasses. The prism was to be placed on the right lens and allow the two pictures I am seeing to be fused into one. The script said the following: “OD, PLANO, sph, 2.0 Up and 4.0 Out”. After waiting two weeks to the script to be filled, I excitedly took the glasses home for a test run. I put them on my head and watched a TV show, trying all the time to fuse the pictures together. After no success, I took the glasses off for a closer look. To my surprise, the prism lens was placed on my left lens, and not the right. Confused, I referenced the copy I made of the script before filling it (yes, I do that!). I entered “OD, PLANO, sph, 2.0 Up and 4.0 Out” into Google, and came up with the Wikipedia entry explaining it. I was not crazy, they incorrectly filled the script placing the lens on the wrong eye. I wonder how often this happens with eye glasses.

A similar mistake happened to me a month ago when I filled a new drug script at Duane Read. I was filling a drug that required me to take 5MG twice a day. When getting my prescription back I looked at the dosage which said 10MG twice a way. Not only was this twice the dosage I was prescribed, but it would have at the very least caused me serious side effects. I asked the pharmacist to look up my script again to see if this was a mistake, and of course it was. “Come back in twenty minutes,” I was told and they fixed the mistake.

I wonder, how often this happens, and why we let the pharmacist and the physicians hold all the cards. Why don’t we demand a clear explanation of the drugs we are given, and a copy of the script for our records? Anyone who knows me knows that I am a very experienced health consumer. I have to be after all these years. I also happen to have a Masters in Health Policy and Management from Columbia University. I am also kind of obsessed with pharmacies (mostly Rite Aid). So it comes as no surprise that I am capable of catching most of the mistakes that arise from this unfair asymmetric information system of filling prescriptions.

But what about the rest of the world, what about you?

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Nov

09

Posted by : admin | On : November 9, 2007

November 8, 2007

 

I stood at the edge of the cliff. Looking down I could see nothing by the mist far below.

“He will be back soon” I thought to myself.

“I have no other choice but to jump.”

So I did.

I fell for what felt like an eternity. Anyone who has fallen before knows that there is no real sense of time on the way down. I had a lot of time to think while my weightless body drifted down towards the abyss. It had been months since I first met Fear. He came disguised as a doctor I had met in Jerusalem. Nice old fellow with a gray beard, told me I was special, told me I was different. Fear has many disguises.

As I flew upside-down towards the bottom I remembered the next time I met Fear. This time I did not see him, but I could feel his presence. He sent shivers down spine, and I could feel his electrifying touch on my left arm. A feeling that stayed with me forever. But Fear, he went away.

I sent him away; I banished him and exiled him into darkness. “Leave now and never come back” I shouted as he glided down the dark hall. “Leave NOW and NEVER come back” I commanded him. And he left. But then he came back.

Before I jumped I felt his presence one last time. I stood with my back to the cliff, staring at my parents and siblings as they glared back at me from the distance. He was among them. I could see it in their eyes. I said nothing. Fear had no power over me, and after I jump, he will leave them alone. Or so I thought. As I looked at my family and Fear one last time, I smiled my last full smile at him, a sign of victory. But before I could turn around to jump, he looked straight at me with half a grin on his face, and that glance stayed with me forever. I jumped, and I knew he jumped after me.

I hit the ground quite hard, much harder than I expected. They never really tell you how the ground feels beyond the mist. They do not know, they have never been here. For a while I was disoriented. But then I felt the straps lay upon me and tighten as they fastened me to the ground. I was now alone, Fear was beside me, and I was too weak to resist him. He tortured me for days, maybe weeks; he sent agents and visions that are too bloodcurdling to talk about yet. But he had no power over me; I had already banished him before. As I got stronger, I felt him get weaker, as I broke away from my restraints he started to flee, and as I started to walk, he started to run. That is last I saw of him.

Two years have passed, and there has been no sign of him. From time to time he sends his minions at me, but I send them back with a shrug. They cannot hurt me now; now that I’ve discovered my ability. Lately I’ve met others like me who were told they were special. Individuals who jumped off the cliff when they were only kids. Heroes who had to expel Fear at a much younger age then I did. Heroes stronger then I can ever imagine, each with their own unique ability. We form an alliance, a team of champions, dedicated to keep Fear away from others who are special like us. Together we stand at the bottom of the abyss and put out our hand to those who arrive. We smile at them as they get to their feet, and ask:

“What’s your ability?”

I will face Fear again in the end. We will all face him in the end. We will meet at the cliff as old advisories, old friends. He will approach me silently, and I will stare him right in the eye. I will not flinch when he faces me with his half a grin. I will return his glance with a big full smile and turn around for the last time and jump into the abyss.

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Nov

05

Posted by : admin | On : November 5, 2007

The idea is to design the most creative and cool eye patch for Akiva Zablocki so he does not need to wear the black one every day.
Options:
1) To make the design on the regular Duane Read $2.99 eye patches.
2) Create your own iPatch from scratch (but talk to Akiva first about shape, sizing and smell).
3) Steal someone else’s patch off their face and run off with it (the Todd Method).

Here are examples of designs that other people made last year, you can see the winner and the runner ups. They were judged on creativity, usefulness and style.
(http://columbia.facebook.com/album.php?aid=2056404&l=9dfe8&id=100183)
You do not need to be a member of facebook to view these photos.

• The winner of the contest will get the grand prize of a new G.M.G and dinner and margaritas on me.
• The first three places will receive a specially designed iPatchman t-shirt, as well as recognition on my blog and future book.

All participants will have the pleasure of seeing their artistic creations worn by their favorite Cyclops (not Polyphemus)
The dead-line is on Saturday, November 17th at 10:30 PM on the night of my upcoming Birthday Party. Everyone will be wearing an iPatch that night, and the ones that have a designed one, will get to show it off before the contest and toast 11 PM (so if you’re wearing one anyway, why not one you designed yourself?)

Akiva
P.S. It does not matter if you are not in New York, not in America or not in this world. We are taking submissions from all over the world: Israel, Germany, Texas, Jersey, and London. All you need to do is send it before the dead line.

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May

01

Posted by : admin | On : May 1, 2007

Link to Story a friend of my family wrote about her memories of the my time in Arizona.

also, you can link back to my old home page from there, to see more pics.

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Jan

05

Posted by : admin | On : January 5, 2007


I was surprised to see that I was on the front page, did not know that I was going to be. also the article was 3 pages, that so it is a long read (but I guess you are used to that from my emails). the quotes in it are not exact, as he was not recording the interview, but they are good enough.

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Jan

05

Posted by : admin | On : January 5, 2007

A Message of Hope – Winner of the 2006 Ulman Cancer Fund for Young Adults College Scholarship – Matt Stauffer Memorial Scholarship

“In another moment down went Alice after it, never once considering how in the world she was to get out again.” – Lewis Carroll, Alice’s Adventures in Wonderland

A Message of Hope – by Akiva Zablocki

Life is not like a children’s story, but we can learn a lot about dealing with the unknown from children. When confronted with a hopeless situation and there seems to be no answer about where you are going, some times you need to just leap into that rabbit hole and have faith that you will come out in wonderland. Four months ago I followed Alice into the rabbit hole.

I was heading towards my senior year at Columbia University. I had just been elected to be Senior Class President, was selected by the Economics department to work as a teacher’s assistant, and was chosen to serve as an orientation leader. I could not wait until the summer was over and I started school again. It was going to be a great year.

Then I stumbled across the rabbit hole.

I was diagnosed with a brain tumor— in the brainstem— and I was told that nothing could be done for it. At once my world and my dreams for an amazing future came crashing down. Over the summer I had seen every top neurosurgeon and neurologist at every hospital in New York. Dozens of doctors, all with different opinions, agreed on one thing: it was too risky to operate on me. Then I spotted a white rabbit.

I sent my scans to Dr Robert Spetzler of Phoenix, Arizona and immediately he told me he would operate. The NY doctors told me in unison, “Don’t go to Spetzler!” He is a cowboy, they said. He takes risks that are too dangerous. But these doctors had not read Alice in Wonderland, and had forgotten about what it means to have faith.

When confronted with what seems like a terminal illness like cancer or a brain tumor, doctors can tell you a lot of things. But nothing they say should ever strip you of your faith. There is no correct answer, there is no one solution. Doctors are tools in our hands and we need to find the right one that fits. No matter what they say, there are ALWAYS options. When they tell you there are no other ways, then you go find the white rabbit to lead you to the hidden path.

I leaped into the rabbit hole, not once thinking how I would get out again, but believing with all my heart that wonderland was on the other side. And I am still here. Dr. Spetzler removed the whole tumor. After four months of rehabilitation, I can once again walk, run, jump, and hop like a rabbit. I wear an eye patch, but that just helps me be part of my own children’s story. I am back at Columbia, and I am still Senior Class President. I have not let my illness overcome me, and with my faith, I am climbing out of this hole towards the life I had. We should, always believe it possible— to find a wonderland of our own.


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