Epilepsy Talk

The Alarming Drug Shortage — A Continuing Crisis | December 11, 2012

The drug shortages that have been plaguing the U.S. show no signs of going away anytime soon.

The problem peaked in 2011, when a record 251 drugs were declared in short supply. This year, slightly more than 100 were placed on the list, and workers say the battle to keep pharmacy shelves stocked continues.

According to the Food and Drug Administration, the number of drug shortages has increased nearly 300% since 2005.

More than half of the drugs on the shortage list are considered critical — meaning they have no alternative. The drugs most often in short supply include chemotherapy drugs for cancer, antibiotics for severe infections and anesthetics for surgery.

Some of the drugs on the list, such as the amphetamine mixed salts used to treat ADHD or attention-deficit and hyperactivity disorder, have been on the list for a year or more.

In a dozen cases over the past two years, the crisis has become so drastic that the FDA has resorted to importing vital drugs from foreign suppliers.

It’s even come down to rationing as a means of addressing the shortage, which health care workers say has ceased to be a temporary emergency and is now a fact of life.

In desperation, they are resorting to treating patients with less effective alternative medicines and using expired drugs.

(Hey guys, this is America, last time I checked. Or are we becoming a third world country?)

The shortage has prompted Congressional hearings, a presidential order and pledges by generic drug makers to communicate better with federal regulators.

Meanwhile, back on the home front, drug shortages have numerous implications for hospitals, healthcare providers and patients.

These include adversely affecting choices for drug therapy, delaying medication therapies or treatments, escalating costs of product and resources to manage shortages, and increasing risk for medication errors and potentially fatal patient outcomes.

There’s also an emotional component to the drug shortages of frustration, anger, anxiety, and mistrust that results in strained relationships between the providers and manufacturers, pharmacy and prescribers, patients and providers.

It’s come down to health care workers around the country using expired drugs or less effective alternatives when a critical medicine can’t be found. The shortages of generic drugs also drive up the cost of care when doctors have to use a more expensive drug instead.

“When you can’t treat basic things  cardiac arrest, pain management, seizures — you’re in trouble,” said Dr. Carol Cunningham, the state medical director for the Ohio Department of Public Safety’s emergency services division.

“When you only have five tools in your toolbox and three of them are gone, what do you do?”

The (sort of) encouraging news is that more than 150 new shortages have been prevented this year.

And the scary news is: that these drug shortages have forced the F.D.A. to make some tough choices. Like allowing manufacturers to sell drugs that most likely would have been recalled if it were not for the crisis.

Last year, for example, the agency allowed the manufacturer American Regent to sell a drug used during chemotherapy that was found to contain glass particles. Doctors and nurses were instructed to filter the drug, sodium thiosulfate, before administering it to patients!

In a recent report, The House Oversight Committee claimed the FDA — the very agency tasked with dealing with shortages — is partly to blame for the shortage situation.

“The FDA has failed to ensure that enforcement and compliance activities are conducted in a manner that does not create unnecessary shortages of critical drugs,” according to the House report.

In turn, the FDA claims “What has changed is that there is an aging manufacturing infrastructure, and there are serious quality problems that have required companies to close down to fix the problems.”

But, the factors that contribute to drug shortages are complex and multidimensional.

They can occur for a variety of reasons found throughout the supply chain such as:

1. Shifts in clinical practices…

2. Wholesaler and pharmacy inventory control…

3. Raw material shortages…

4. Changes in hospital and pharmacy contractual relationships with suppliers and wholesalers…

5. Adherence to distribution protocols mandated by the FDA…

6. Individual company decisions to discontinue specific medicines…

7. Natural disasters…

8. Manufacturing challenges.

President Obama’s executive order has instructed the FDA to do 3 things: “broaden reporting of potential shortages of certain prescription drugs, speed reviews of applications to begin or alter production of these drugs and provide more information to the Justice Department about possible instances of collusion or price gouging.”

But, all that being said; until federal regulators can bolster the supply chain without compromising quality, we can’t be assured of reliable access to safe medicines.

To see exactly which drugs are in short supply, according to the FDA, go to: http://www.fda.gov/Drugs/DrugSafety/DrugShortages/ucm050792.htm

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  1. That brings me to a question where we get to a point where seizure/epileptic patients struggle with people who don’t understand the difference between control and stability. How do we explain to people what we already know what works for us when they constantly feel the need to change our “medicine cabinet” and try something else when we feel we are already in control compared to where we might have been before?


    Comment by Liza — December 11, 2012 @ 1:28 PM

    • Liza.
      I doubt, that they don’t know our fate & ordeals.

      After so much EXPERIENCE with this nightmare & the hospital industry bureaucratic ORDEALS, I come to believe, many of the so called “HEALTH INDUSTRY”,,, COULD CARELESS to bother, with what it takes to do right.

      In fact, I noticed some FEEL our lives are under total CONTROL in their finger tips,

      Add the FINANCIAL GAINS cashing on our misery, our Epilepsy becomes “INVESTMENT STOCK” to keep trading on.

      While many PROFESSIONALS may take caring for PATIENTS, as huge responsibility to carry on, few seem to be ANNOYED with our demands for medications our lives depend on.

      Sad to lose TRUST & FAITH in the very people & system, ONE comes to COUNT ON & SEEK REMEDY, for anything life may have UNFORTUNATELY forced on one.


      Thanks for this site, at least we got something to count on, we care about each-other enough, to share our ordeals & LIFT EACH OTHER UP.
      WE GOT EACH OTHER TO LEAN ON & .no “health industry” can take this PRIVILEGE from us.
      Therefore, let’s keep counting on each other, for anything else seems impossible to depend on.

      We will keep going, against ALL odds!!!
      STAY STRONG !!!


      Comment by Gerrie — December 11, 2012 @ 7:56 PM

      • Thanks Gerrie for the words of encouragement, it’s been rough lately with everything people keep telling me. Do this, do that.. blah blah blah. I’m sick of it. I just want to be healthy and content, nothing wrong with that.


        Comment by Liza — December 11, 2012 @ 11:08 PM

  2. This is not a reply to Liza’s very good comment–but a separate line of thought. There is always a way around regulations; in a drug company, one creates corrective and preventative actions, for example…and the ultimate resolution may not happen for an extended time. I don’t believe regulations are the answer. What I’d like to understand before we can propose an answer is why these shortages exist and why they are growing. From the FDA list, it appears they are both generic and brand-name drugs. I worked for 10 years in a small drug company; from my limited understanding, I think one issue is the ‘virtual’ drug development and supply chain.


    Comment by Linda — December 11, 2012 @ 1:49 PM

    • Well, I think the FDA is sure making it hard for name label drugs AND generics.

      As said above, “The FDA has failed to ensure that enforcement and compliance activities are conducted in a manner that does not create unnecessary shortages of critical drugs.”

      That, in my humble opinion, is one of the chief snags in the chain.


      Comment by Phylis Feiner Johnson — December 11, 2012 @ 3:08 PM

    • God Linda,,, “I don’t believe regulations are the answer”.

      I’ve a friend who owns a Liquor store & was ARRESTED & FINED for buying & selling “UNREGULATED street-cigaretts” from UNDER COVER AGENT.

      Now, If the so called “CARING GOVERNMNET” can REGULATE, ENFORCE & AUDIT, candy, cigarett, beer, wine, alcohol, Gas,,, PRICES, why can’t the same “CARING GOVERNMNET”, regulate HEALTH COSTS, leaving desperate millions of patients seeking medical care on thier own, in the hands of SHARKS, who are more INTERESTED IN CASHING ON HUMAN MISERY than healing the sick ???

      What’s the point of a governemnt, regulating Gas, Cigarett, CANDY PRICES,,, but NOT health care costs for despderate patients in despaerate medical need?

      What makes the “government” any different than the SHARKS bartering, trading on human lives , cashing in & PROFITING from human misery?

      Something is PROUFOUNDLY WRONG here & needs immidiate attention before it’s too late.


      Comment by Gerrie — December 12, 2012 @ 8:30 PM

  3. What will they do if your on a medicine and its currently working for you and they run short of that? Is that when they have to put you on something else in place of it?Or does your doctor then decides what to have you take?


    Comment by Corina — December 11, 2012 @ 2:02 PM

    • That is what I’m afraid of… which is why I will be discussing other alternatives next week. New studies are showing up after all and I am NOT afraid to try them.


      Comment by Liza — December 11, 2012 @ 11:11 PM

  4. I presume your doctor would have to come up with a Plan B.

    Or you can call all over the place looking, like me.

    I was prescribed Buspirone. I called pharmacy after pharmacy (we’re talking BIG name giants) and I finally found it at the Acme! (Who would have thought?)

    Heaven knows what I’ll do when I need a refill. 😦


    Comment by Phylis Feiner Johnson — December 11, 2012 @ 3:13 PM

  5. God Phyllis,,,, Who is telling you my nightmares?

    Imagine your article COINCIDING with this nightmare.


    – Before I run out of Dilantin, I called the Pharmacy BEGGING FOR REFILL a week ahead,

    -THREE DAY LATER, I took two trains & two buses to pick my REFILL prescriptions.

    GUESS WHAT ???

    After waiting in line for an hour in the Pharmacy, I got the call I’ve been waiting for,,,, “next in line please”,

    – Yes Mom, I’m here to pick up my medication, I ordered a week ago.

    – Ok, Let me see your ID to check your order.

    – Sure, here’s my ID, my Medical Card,,,, etc.

    – Ahhhhh.. NO Sir, You don’t have Refill,
    – What? I ordered a week ago & no one said anything.
    – Sir, YOU need to see your Neurologist for more REFILLS & THERE IS NOTHING I CAN DO ABOUT IT.

    – But, It’s weekend, the Neurologist is NOT available.
    – Ok, Go to Emergency room,
    – No, Go to Urgent Care,
    – No, Go to Speciality Clinic,

    – YES MOM,,, I will just have to keep going where ever I can find my medications.

    God Bless this YOUNG Speciality Clinic DOCTOR,

    – “May I help you, What do yo need”?

    – Doc, I’m running out of Dilantin & I’m afraid I’m going to have seizures.

    – Dilantin, Let me check your medical records?
    Ok, Alright,,, Here take this to the Pharmacy.
    – Thanks Doc. It has been a little bit SCARY, going back and forth between the Pharmacy, ER, Urgent Care & finally you.
    – No, Doc. That’s all. Just Dilantin for my Seizures.
    – Alright, good luck & Nice weekend.
    – Thanks Doc.

    – Excuse me Pharmacist, I got new order for refill for my seizure prescription, Dilantin.
    – Ok, Let me see,,,
    – Ok,,,

    Half-way down the road from the hospital heading home, ANOTHER GRAND MAL SEIZURE INSIDE PUBLIC TRAIN.

    All of a sudden, knocked out unconscious another AMBULANCE ride, back to the Hospital emergency room,

    All my shaken muscles still hurt, while I’m writing this ordeal.

    Phylis, Living with Epilepsy has been a nightmare.
    But living with Epilepsy, PLUS pharmaceutical bureaucracy is VERY TORMENTING ORDEAL, that should NEVER had to happen in SPACE AGE & CIVILIZED WORLD.

    Thank you for sharing your heart, time & resources to listen to our painful fate.



    Comment by Gerrie — December 11, 2012 @ 6:17 PM

    • OMG. Just think if you were on a “controlled substance”!

      I would have throttled them all until their eyes bulged out of their heads.

      But, then I guess they’d just say I’m CRAZY. Wonder why?


      Comment by Phylis Feiner Johnson — December 11, 2012 @ 6:50 PM

      • Phylis,
        Going through these ordeals, the anger & frustration is just INCREDIBLE.
        But, immidiate angry reaction would ONLY make matters worse.
        Therefore, SWALLOWING THE AGONY is far more safer.
        So, life goes on.


        Comment by Gerrie — December 11, 2012 @ 8:36 PM

      • Lol, not to get all political but it’s a wonder why our country is going downhill financially telling us to go one place to another! Insurance co… No one should have to deal with this.


        Comment by Liza — December 11, 2012 @ 11:14 PM

      • Phyllis,
        Imagine, the SAME Pharmacy calling me today, to pick up my medication, after 10 DAYS of runaround that could have been safely avoided and after ER Doctor already REFILLED three month worth supply of my medication?

        This is the same Hospital, which should have ALL the records of my medications, calling me to pick up medication, after ER DOCTOR ALREADY REFILED MY MEDICATION, nearly a week ago !!!!

        FASCINATING,,, So much for healthcare Industry 🙂
        Nightmare-Industry would fitted better !!!


        Comment by Gerrie — December 14, 2012 @ 5:03 AM

  6. Sometimes I feel like we’re a third world country. They seem to get more attention than us!


    Comment by Phylis Feiner Johnson — December 12, 2012 @ 9:15 AM

    • – Imagine health and medical difficulties being BARTERED for HIGHER financial gains, just like any other man made commodity?

      – Imagine, “Health Care” Industry and hospital system, taking HELPLESSLY SICK AND DESPERATE CITIZENS HOSTAGE, to make MORE PROFIT AND HIGHER QUARTERLY EARNINGS, when the citizens are STRUCK WITH ILLNESS, and liFe is hanging by thread?

      – Imagin paying EARNING DEDUCTIONS AND TAXES ALL YOUR LIFE TIME TO THE SYSTEM, to only get DEPRIVED medical threatment, when life is falling apart?
      (It feels like being EXPENDABLE).

      – Imagine in space age, when Science has gone beyond imaginations and reaches of mankind, NOT ENOUGH MEDICINE to save patient’s lives is AVAILABLE, in the richest country in the world?

      Sad to say, It’ may have to go worst, before it EVER gets better
      Is avai

      and reaches of mankind, the richest country in the world, can NOT provide reliable healing system to centuries old medical disorder.


      Comment by Gerrie — December 12, 2012 @ 1:38 PM

        Posted from iphone, No editing options available at the moment.


        Comment by Gerrie — December 12, 2012 @ 1:50 PM

  7. Isn’t that what the insurance companies do? 😦


    Comment by Phylis Feiner Johnson — December 12, 2012 @ 1:51 PM

    • Sadely Yes,

      But, Where is the justice in BARTERING HUMAN LIVES for profit?

      WHY ALLOW insurance compamies to profit, at the expense of human liives?

      Where is the INTEGRITY OF SOCIETY?

      Who is supposdeed to draw the line, between making profits & protecting human lives?


      Taking advantage of human misery, when the chips are down seems so UNJUST, it make you wonder, HOW COULD THIS BE POSSIBLE AT ALL, in “civilized world”?

      GAMBLING human-lives sound like crime to me.

      Let’s hope, society will be FORCED TO WAKE UP ONE DAY to do what is right.



      Comment by Gerrie — December 12, 2012 @ 5:02 PM

  8. The way i see it here in CA, we have an illegal immigration problem. All the illegals are coming in here to take advantage of all the benefits available for the poor. Well with all these new 3rd world people coming here, there problems come as well. So the more we are taken over, the more we become like them. Depleting our resources. Last time i was in the ER, i had to wait for like 2 hrs before being seen, you want me to tell you who the majority of the people in there where? A clue, a lot of non English speaking people. And now we have a bill that allows illegals to get government funded education at the university leave. Something sounds fishy with all this.


    Comment by Zolt — December 12, 2012 @ 4:51 PM

    • Zolt,
      So, how was the health care system before “Illegals” arrived in USA?

      Do you mean to say, the system just got broken last night ?

      I doubt it.

      Sorry, to change the HEALTH CONCEREN to political debate, but I think there is more to it than the eye can see.

      PROFITS, PROFITS, PROFITS AT ALL COSTS, seems the ONE & ONLY MOTIVATION to “provide health-services”, for society in desperate NEED of one,


      Comment by Gerrie — December 12, 2012 @ 5:22 PM

    • Excuse me, but who’s going to do all the jobs that Americans don’t want to do?


      Comment by Phylis Feiner Johnson — December 12, 2012 @ 6:03 PM

      • It’s just a way to deflect the “BLAME”, IRRESPONSIBILITY, and avoid accountability to the EVER growing EXPENSIVE problem of CORRUPTION AND MISMANAGEMENT.
        Deflecting the CORRUPTION from law makers to law breaker ILLEGAL IMMIGRANTS helps the politians DECEIVE the public and keep taking advantage of the PUBLIC RESSENTMENT, anger, frustration and CONFUSION, therefore, the public will NOT DEMAND, LEGITIMATE AND LEGAL REMEDY TO THE EXTENSIVE CORRUPTION.

        BTW; I bet you, the “Illegals” are paying their FARE SHARE of taxes from EVERY PAY CHECK THEY EARNED and HEALTHCARE COSTS just like the legals.

        Furthermore, We need the Mexicans to get a whole lot of things done, more than they need us.
        I can’t EVEN imagine, who would be WILLING to take their place, picking up Onions, Potatoes, Tomatoes, Carrots, Vegeatables, Fruites and ALL OTHER labor-intensive hardworking under various garish weather conditions and unsafe work environment.

        Therefore, blaming the “illegals” for political CORRUPTION financed by “healthcare” CRIMES, is barking at the wrong tree.

        There had to be a way out of this mess, before the whole public end up taken HOSTAGE by “health-industry”.


        Comment by Gerrie — December 13, 2012 @ 12:09 PM

      • Here I am, thinking… no one really complains about the cost of alcohol and cigarettes but there’s an uproar on our health care. What would happen if we got rid of those and reduced the need for health care in the first place?
        I was reading yesterday, organic food cost 50 percent more than it should be today because we don’t seek it out, even though 3/4 Americans claim they would purchase it. What does that say about us?


        Comment by Liza — December 13, 2012 @ 12:20 PM

  9. Gerrie, you know the hopitals are in conclusion with the insurance companies.

    Example: One sad, sorry year we decided to “save” on health care insurance — since we’re self-employed.

    So we took out health care coverage with a $10,000 deductible. (WHAT were we thinking of?)

    Anyway, I promptly got a kidney infection which ended me up in the hospital for 5 days (not unusual) hooked up to an antibiotic drip.

    The out of pocket cost? $10,000. BINGO!


    Comment by Phylis Feiner Johnson — December 12, 2012 @ 6:10 PM

    • Phylis,

      Every “ONE WAY” Ambulnace ride to Hospital ER, any where around town cost me $1500.00, while Taxi “ROUND-TRIP” ride to the same hospital costs me $20.00, including tiping the driver.

      Every over-night stay in Hospital ER coste me $3500.00, while Hotel stay with nice dinner costs me less than $100.00, including tipping the hosts.

      Therefore, every time i ended up having grand mal seizure & wake up in Hospital emergency room, I end up with $5000.00 Ambulance & hospital bill, which must be paid.

      NOW, why would,
      – 10 minutes Ambulance ride to the Hospital cost $1500.00?
      – over night stay at Hospital ER cost $3500.00?
      – every Seizure end up costing $5000.00?

      Human tradgedy in need of “EMERGENCY RESCUE” being SO EXPENSIVE, I tell my family, to NEVER CALL AMBULANCE,when EVER I’m having seizures, just put pillow under my head to avoid more damage & let me get it over with, what ever is coming.
      And works miracles, far more better than the Ambulanc, & hopsiatl huggles & bills.

      I believe, this is totally insane.
      -“legitmate & legal” HIGHWAY ROBBERY,
      – with no justification for the OVERPRICED COST nor LEGAL AUTHORITY to “AUDIT” the unjustified cost.

      Sooner or later, society will be FORCED to draw the line, just like drawing the line over the “PRICE OF CANDY, CIGARETT, BEER, WHINE, ALCOHOL”,,, etc.


      Comment by Gerrie — December 12, 2012 @ 7:29 PM

      • I’m with you.

        My ambulance ride across the street cost $1,500. (But I was in a coma and couldn’t protest.)

        Sally has had her roommate stand at the end of the driveway so the ambulance couldn’t get to the house.

        And I’ve had EMTs come (5 of them with oxygen, med kit, etc. It must have been a slow day!) and my seizure was OVER.

        They were very disappointed to leave.

        Oh, by the way, this was in an orthopedist’s office. He wanted no part of me. Sort of like; “Not on my turf, you don’t!”


        Comment by Phylis Feiner Johnson — December 13, 2012 @ 8:38 AM

  10. The last time i was in the ER when i noticed this was 5-6 yrs ago. So the cumulative affects have been going on for quit some time, it didn’t just happen overnight.

    With all the illegals here in CA, there is a shortage of crop pickers. What does that tell you?


    Comment by Zolt — December 12, 2012 @ 6:39 PM

    • Under the DISGUISE of “campaign funds”,,,,

      CORRUPT POLITICIANS hired & paid to REPRESENT “health industry” or insurance sharks, can’t POSSIBLY have any INTEREST in public service.

      Therefore, the ROOT CAUSE of the whole nightmare is the very “politicians” who claim to have “public interest” in mind, while MILKING THE PUBLIC & serving the INTEREST of those who “FINANCED” their political campaigns, under the ULTIMATE AGENDA,,, “we will scratch you back, so that you will scratch our back”.

      it’s seems ONLY LOGICAL,,, Those who paid for the “THRONE” own the politicians, more than those who seek help from the politicians.

      Too bad, the “public” is deceived to believe, the politician’s “THRONE”, represents the interest of the public.


      Comment by Gerrie — December 12, 2012 @ 9:02 PM

      • If there’s no money to be made, there’s no interest.

        One example is the PUBLIC hospitals that are going out of business.

        St. Vincent’s Hospital, down in the East Village, closed and there’s literally no place for those POOR people to go.


        Comment by Phylis Feiner Johnson — December 13, 2012 @ 8:30 AM

  11. There aren’t enough Mexicans! 🙂


    Comment by Phylis Feiner Johnson — December 12, 2012 @ 7:22 PM

  12. Liza, better yet, how about HIGHER taxes on cigarettes and alcohol…and while you’re at it candy and junk food?

    (No one would ever get voted back into office!)


    Comment by Phylis Feiner Johnson — December 13, 2012 @ 12:47 PM

    • I think wine and chocolate is ok in moderation, everything else- no.

      Romney attempted this concept but didn’t get voted.


      Comment by Liza — December 13, 2012 @ 12:55 PM

  13. LOL! 🙂


    Comment by Phylis Feiner Johnson — December 13, 2012 @ 3:43 PM

  14. Liza,
    Sure, to cover up the CORRUPTION IN MEDICAL INDUSTRY, the beneficiaries of the CORRUPTION always convert the DESPERATION OF HUMAN NEEDS for medical treatment in to political game, ROTATING the BLAME, EXCUSE AND COVER UP around,
    – LICENCING COSTS, operation costs, labor costs, Insurance costs,
    – Supply and demand, Americans living longer therefore needing extended healthcare supply, needs and demands
    – Over population requiring greater supply for healthcare needs,
    – ILLEGAL IMMIGRANTS, taking advantage of healthcare with out sharing fair share of the healthcare costs,
    – Natural disasters, earthquakes, firestorms, Global-warming, floods,, etc,


    Most of these EXCUSES being used to rationalize, justify and COVER UP the CRIMINAL CORRUPTION IN HEALTH CARE COST, existed before there ever was medical industry, making the justification INVALID.

    Sadly, the corrupt-justifications may DECEIVE GULLIBLE PEOPLE to believe that TEN MINUTES, ONE WAY AMBULANCE RIDE TO THE HOSPITAL COSTS $1500.00, while ordinary people believe these OVERPRICED RIDES ARE ENDED INSANE AND UNNECESSARY COSTS to benefit corrupt-industry.

    Therefore, you are MIXING Oranges with Apples.

    Those who CHOOSE TO PAY FOR “LEISURE”, Alcohol, Food, Gas, Casinos, Cars, Private Jets, CASTLES,,, are NOT in the same FOOTING with those who are DEPRIVED MEDICAL TREATMENT for UNAFFORDABLE LIFE SAVING HEALTHCARE COSTS,
    The patients taken for hostages by corrupt medical industry have no alternatives to shop arround for “affordable prices” to stay alive and healthy, while the corrupt industry keeps bleeding the patients to death.
    I hope, you have come to see, the injustice ofbthe corrupt medical industry.


    Comment by Gerrie — December 14, 2012 @ 4:23 AM

    • Gerrie,
      I’m not disagreeing with you; although, sodium (can regulate heart blood flow from iodine) in moderation, sugar helps hypoglycemics, alcohol and certain drugs can save people’s lives or help them live longer.
      I spent time in two, third-world counties, I’m not saying I know what I’m talking about but I’ve seen enough to know that we don’t need a lot but people do need these things too in order to survive. I don’t think we should eliminate a leisurely lifestyle completely, even I enjoy a good chocolate bar every now and then.
      But I agree, we are a consumerism country where we spend on way too much.


      Comment by Liza — December 14, 2012 @ 10:22 AM

  15. Liza,

    Thanks to EXTRAORDINARY LIFE before Epilepsy, I lived in many parts of the world & have a very good ADVANTAGE to know Europe, Africa, Asia & USA.

    FYI: Round trip Airplane ticket for a week of vacation in Europe, staying in fine hotels with fine meals & cheerful services costs me $800.00 to $1000.00.

    Now why would,

    – One way Ambulance ride to the nearest Hospital ER cost me, $1500.00?

    – Hostpital ER overnight stay, strapped to bed cost me, $3500.00?

    – Total Single day Seizure “treatment” cost me, $5000.00?

    If you can NOT see the CORRUPTION in this picture, you are either in denial or you are DESPERATELY trying to cover up the CRIMES of the medical industry.

    Personally, I believe, DEADLY CRIMES ARE BEING COMMITTED BY THE MEDICAL INDUSTRY, bleeding patients to death, when patients are down, out & can’t even protect, defend & save their lives, treasure & resources.

    It is hard to fathom, these CRIMES are being committed ALL in the name of “health-care-industry” 🙂

    There is NOTHING “healthy” nor “caring” about this sadistic criminal CORRUPTION, people are forced to pay for, live or die.

    Watching HUMAN LIVES turned EXPENDABLE to INSANE PROFITS of “medical industry” is just TOTALLY UNCIVILIZED CRIMES in so called “civilized world”.


    No where in the world is healthcare costs, as CRUCIFYING as in USA.

    Something is DEADLY WRONG here, Liza.


    Comment by Gerrie — December 14, 2012 @ 6:27 PM

    • Gerrie, Please don’t attack Liza.


      Comment by Phylis Feiner Johnson — December 14, 2012 @ 8:07 PM

      • Phylis,
        I’ve got a whole lot better things to do, than ATTACKING LIZA.

        It just have been PAINFULLY FRUSTRATING WEEK, going back & forth dealing with the Pharmacies & Hospitals, desperately trying to avoid another grand mal seizure, to only end up UNNECESSARILY having one, ending up to deal with Ambulance EMT, back to the Hospital ER & pharmacy again.
        I may have sounded BITTER at the justification of all this nightmare.

        Therefore, I apologize, if sounded
        “PERSONALLY” attacking Liza or anyone else.

        Peace 🙂


        Comment by Gerrie — December 14, 2012 @ 8:36 PM

  16. Oh Gerrie, I’m so sorry about what you’ve been going through. I hope you feel “better” soon and that this week is kinder to you.

    Sometimes I forget what everyone is going through, day after day, because people rarely complain.

    I’m sorry Gerrie. Please forgive me.


    Comment by Phylis Feiner Johnson — December 15, 2012 @ 9:41 AM

    • Gerrie,
      In my defense, I have had to pay a $8,000 hospital bill before for a day a half stay and $800 EMT bill. Oh an by the way, they almost always refuse to provide an ASL interpreter. I’m not here to complain though. I feel for you though, I understand what you’re going through. Please don’t judge my circumstances and say you don’t know anything about me and crucify me, I never said anything wrong, I’m only saying that healthcare just needs to be changed but only with sarcasm and humor, that’s it. I’m sorry if you took it the wrong way.

      I just want you to know I’m sorry you’re having a difficult time right now. Please know you have our support with whatever you’re going through. I will be praying for you.


      Comment by Liza — December 15, 2012 @ 10:23 AM

      • Liza,
        I’m positively sure, you live in my shoes & share the same health difficulties, medical & hospital nightmares EVERYDAY, just like I do.

        Therefore, I’ve NO REASON to Judge nor justification to CRUCIFY YOU, when you are ALREADY dealing with the same nightmare I’m dealing with.

        But, discussing our ORDEALS in what’s legitimately called “EPILEPSY TALK”, is NOT about complaining or personally offending anyone.

        It’s about sharing our DAILY concerns, ideas, opinions, agonies, support system & DISCUSSING,
        – MEDICAL TREATMENT, PRESCRIPTIONS, Ambulances, Doctors, Pharmacies,


        Therefore, in discussing our daily NIGHTMARES, having various different OPINIONS that brought us to this website “Epilpsytalk”, as much as you are ENTITLED TO JUSTIFY your points of discussion, so is everyone else.

        I personally believe, the MEDICAL & “HEALTHCARE” INDUSTRY’S justification to EXPLOIT, LOOT & DEPRIVE patients to the point of depriving patients to death, is OUTRIGHT FRAUD, EXTREME CORRUPTION GONE OUT OF CONTROL & most likely illegal.

        Therefore, if the justification & rationale to DRIVING HEALTH CARE COSTS BEYOND the reach of society is FAST FOODS, CIGARETTES, ALCHOLHL, SODIUM, SUGAR, ILLEGAL IMMIGRANTS,,, etc, causing health-hazards to society,,, just like BANNING MARIJUANA under any form & shape of justification,,, WHY NOT BAN FAST FOODS, CIGARETTES, ALCHOLHL, SODIUM, SUGAR, ILLEGAL IMMIGRANTS,,, under the justification of health-hazards DRIVING THE HEALTH CARE COSTS BEYOND the reach of society, instead of EXPLOITING & MILKING THE PATIENTS TO DEATH FOR MAXIMUM PROFIT.

        So far, the justifications & rationale to DRIVE HEALTH CARE COSTS BEYOND the reach of society is simply outright FRAUD, to EXPLOIT THE PATIENTS TO DEATH FOR MAXIMUM PROFIT.


        I’m sorry for earlier confusion but I hope, you can see where I’m coming from.

        Wishing you all the best.

        Peace 🙂


        Comment by Gerrie — December 15, 2012 @ 8:34 PM

    • Please Phylis,,, Come on now 🙂

      You are ALREADY CARRYING TOO MUCH OF A BURDEN, providing great services to too many of us, who have no ACCESS to anything but your website to find REMEDY for our nightmares, YOU HAVE MORE REASON TO BE PROUD OF, FEEL VALUABLE & IMPORTANT FOR CONTRIBUTING TO OUR WELL-BEING, than anything you have to apologize for.
      Therefore, Forget it, No need for apologies.

      We come here to,
      – seek information, mercy & remedy to our ordeals,
      – discuss ideas on how to best deal with our nightmares.
      – and sometimes VENT OFF our deep agony & bitterness at the very system, made us out to be victims of bureaucratic TERROR.

      Therefore, Your great services has been LIFE SAVING more than many of our “hospitals, pharmacies & Doctors”, has ever tried too.

      Thank you for your understanding of the ordeals I just went through.
      It sure has been as frustrating as hell, but none of what I said MEANT to offend anyone here.

      At the end of the day, we are ALL dealing with the same NIGHTMARES,,,, “EPILEPSY & medical industry”.

      LET’S ALL KEEP THE FAITH that we will overcome this ordeals, TOGETHER !!!

      CHEERS 🙂


      Comment by Gerrie — December 15, 2012 @ 6:34 PM

      • I do it out of love…


        Comment by Phylis Feiner Johnson — December 16, 2012 @ 10:11 AM

      • Phyllis,
        You must have the heart of an ocean, to provide your PRECIOUS time, resources, know how and SHARE the ENTIRE EXPERIENCE about Epilepsy with millions of people, out of love.
        I wish, those who claim to provide “PROFESSIONAL HEALTHCARE SYSTEM” had a piece of your heart, to CARE for those who UNFORTUNATELY ENDED UP up at their mercy, with no other choice.
        Again, Thank you for your devotion.


        Comment by Gerrie — December 17, 2012 @ 12:05 AM

  17. Well Gerrie, here’s a Reader’s Digest of the story…

    I was a commercial advertising writer for 31 years. I had my own freelance business for 27 of those years. I made lots of money.

    Then I almost died.

    Thanks to Wellbutrin, I was seizing non stop. For hours.
    Finally the ER (whose people were fabulous) got it to stop.

    Then, because the Wellbutrin was time release, I started seizing even more violently a few hours later.

    I had a heart attack. They called Arthur and told him perhaps he should gather my nearest and dearest. (Of course it was 2:00 AM on a Saturday.)

    After the heart attack, they induced a coma and put me on life support for a few days.

    After a week in the hospital, I went to rehab. Then out patient rehab. Then home, where I couldn’t do a thing.

    It took me 3 months to even find the key board, so I had lots of time to think. And I realized (with the help and generosity of Arthur), to dedicate the rest of my life to doing what I really wanted in my heart of hearts to do.

    And Epilepsy Talk was born.


    Comment by Phylis Feiner Johnson — December 17, 2012 @ 9:01 AM

    • GOD PHYLLIS,,, You are just fascinating.
      Your will power, determination & devotion is INCREDIBLE.
      And your loving husband, Arthur, taking ALL your ordeals on the chin & sticking to the end of it is ADMIRABLE. 🙂

      These days, watching families breaking apart over INSIGNIFICANT arguments, Arthur had to have INCREDIBLE PERSONAL INTEGRITY & COMPASSIONATE LOVE FOR YOU to bear it all with you.

      Arthur standing by, you got a whole lot going for you, when life seemed IMPOSSIBLE to make it to the next minute, next hour or next day.

      These are the guys society should look up to, SOLID STRONG MORAL CHARACTER, who whether the storms & stand out, when the sky is falling.

      Thanks to Epilepsy, SOME OF US ARE STILL LEARNING THE HARD WAY, about human character, loyalty, integrity, faith, promises,
      “professional services” NOT listed on brochures, information booklets & prescription instructions.

      I bet my life, ALL, the so called LAW- MAKERS, Hospitals, Medical industry, healthcare “professionals” & insurance carriers, who claim to have what it takes to “SERVE THE PUBLIC”, would NEVER fit Arthur’s shoes, for IT TAKES A HERO TO STICK IT OUT through thick & thin.

      Thank you for sharing your experience with Pulps, your beautiful inspiring, encouraging & uplifting “Reader’s Digest of the story” 🙂

      Good to know, determination, will power & devotion is far more more POWERFUL than heart attack & Epilepsy.

      CHEERS 🙂


      Comment by Gerrie — December 17, 2012 @ 11:06 PM

  18. Arthur is 6’5″. And yes he DOES have big feet. 15 1/5 AA. Try to find shoes for those!

    But he has a compassion just as large. And decided along with me, that if I lived, it had to be meaningful and
    for me that meant epilepsy.

    He’s always wanted “to give back” and supporting me in my efforts makes him enormously proud.

    How much better could it get?

    Promises are meant to be honored.

    But funny, it was complete strangers who saved my life.


    Comment by Phylis Feiner Johnson — December 17, 2012 @ 11:23 PM

    • Imagine, how much it takes to BEING THERE, every time the sky falls down AGAIN & AGAIN, than just being there for a SPUR of a moment, help out as much & walk away from it all, to never see nor face the same calamity, again???

      Some rocks are meant to stay solid strong, when the earth shakes down.
      And when seizures strike AGAIN & AGAIN, one hopes on something to count on.
      It’s GREAT that you have ARTHUR, somebody & something to count on, when the chips are falling down.

      For many that’s the DILEMMA, getting caught between TWO cross-fires, SEIZURES & mercenary “healthcare-industry” EXPLOITING the misfortunes of mankind, bleeding patients to death to make FORTUNES, while crucified FAMILIES helplessly are “HOPING on something to count on”.

      In space age, where man gets to step on moon & kiss the stars,,,,THERE HAVE TO BE BETTER WAY THAN THIS.

      Thanks to your DEVOTION, we got Epilepsytalk to county on, to address, discuss, share,,, this nightmare.

      Therefore, if one DETERMINED LADY can make this possible, bringing a whole lot people to LEARN HOW TO COPE & LIVE WITH EPILEPSY, how is it too difficult for a “CIVILIZED NATION”, to CREATE LAWS THAT SHOULD PROTECT the same people, from,,,,,

      “the DILEMMA, getting caught between TWO cross-fires, SEIZURES & mercenary “healthcare-industry” EXPLOITING the misfortunes of mankind, bleeding patients to death to make FORTUNES & crucified FAMILIES helplessly, “HOPING on something to count on”.


      Thanks 🙂


      Comment by Gerrie — December 18, 2012 @ 5:52 PM

  19. One of the big problems i see, is that insurance companies are in it to make profits. I think that is wrong. Same with hospitals and drug companies. I see big building being built next to hospitals and i wonder who did they robbed to get the money for all that.


    Comment by zolt — December 18, 2012 @ 4:22 PM

    • Zolt,

      Human lives, the HEALTH, SAFETY OF MANKIND & WELBEING OF FAMILIES should NEVER be left for merchandise, when people are helplessly sick, can’t defend themselves against predators & praying for remedy.

      Sadly, it seems those who “SWORE TO CREATE & UPHOLD THE LAW” to protect society from predators, are dancing to the the same drumbeat of the predators, SHARING THE LOOT in cashing on human misery.

      Where do you draw the line?
      TOTALLY INSANE, something is rooting in here.


      Even animals don’t BARTER, one of their own.
      So much for “civilized society” 🙂


      Comment by Gerrie — December 18, 2012 @ 6:24 PM

  20. As a little tidbit of trivia, here’s the beginning of the doctor’s oath: “First do no harm..”


    Comment by Phylis Feiner Johnson — December 18, 2012 @ 6:38 PM

  21. Excellent way of explaining, and fastidious post to take data about my presentation topic, which i am going
    to convey in academy.


    Comment by jocuri online cu masini — January 31, 2013 @ 8:08 PM

  22. WONDERFUL! I’m so happy to be of help.

    Best of luck to you.


    Comment by Phylis Feiner Johnson — January 31, 2013 @ 8:11 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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