When $65,000 a year for a drug is applauded : Pharmaceutical Prices & A Disabled Person’s Right To Live in Dignity with All Needs Met

When $65,000 a year for a drug is applauded

http://www.cnn.com/2017/04/03/health/prescription-drug-prices-public-opinion/index.html

Paulette Le Pore Motzko’s Note to Pharmaceutical Companies on Placing People First and Nevada’s Unfair Treatment of People with Epilepsy, Civil Rights & Disabilities 

I wish more pharmaceutical companies had more or a “Triple Win Attitude”: I Win, You Win & Society Wins. Huge multi million dollar companies need to keep ever present the real, flesh and blood people they are developing the drug to help.

They simply can function effectively as a business and still charge less  for the consumer. 

For instance, my medicine for epilepsy called Vimpat that I take is $20 a pill made by UCB. It cost nearly $2,300 a month along with my Tegretol that I take for a complex partial epilepsy. I have Nevada Medicaid and am on SSI, which allows you to make money and collect it, and pays less than SSDI-full disability.  (it also took two and a half years to win with the aid of a social security disability lawyer  too and I had to say goodbye to my alimony from the rocket scientist I was married to for 15 years to get that crappy $728 but my medical is covered. 

Yet after stating all those facts, the state of Nevada doesn’t think anyone who was diagnosed with epilepsy has a medical conditiom or termed disabled, even though the director at the DMV told me I will automatically get a disabled placard when I update my Nevada state ID.

 (I’m still trying to obtain a certified copy of my old marriage license to prove I’m Paulette Le Pore Motzko. That’s a $65 stupid document is so outrageous it is unbelievable. I’ve been divorced from him since 2001 and my name was legally changed in Garden Grove, California in 1986, when I got married.  I’m going to go talk to one of my friends who is a librarian and see if she can get me the silly document free because $65 is a lot of money to prove I’m who I am! I’ve been trying to get that document 3 times now and it is difficult since my CA ID expired on my birthday last August.

Nevada needs to spend more time educating their political leaders about things like crimehuman dignity, the pedestrian fatality rate and placing penalties on drunk drivers and their educating RTC and people who are public servants about various disabilities, NAMELY neurological ones like EPILEPSY. That would use everybody’s time in an effort worth expending time on.

This may be Nevada and it may have the worst weather in the United States, and 60 mile an hour-knock you on your ass dust storms, high fraud rates,  allergies that wont quit due to blowing dust, and vapes and casinos on every corner with few nonsmoking areas other than Starbucks.

But Nevada is still only one state in the USA it still is the United States of America. And as far as I’m concerned as far as I know, in the USA, we all have certain basic rights.

One of those rights is to be treated fairly. Denying people with epilepsy the right to use Paratransit and having the head Federal representative not know what epilepsy even is is a crime.  

That should be against the law and it probably is.

After after the grand negligence that happened to me regarding Paratransit  and the callousness and apathy on behalf of Senator Harry Reid’s office is disgusting.

 It doesn’t reflect great kindly on him.  The irony is Harry Reid can barely see and uses Paratransit himself, so you think he’d be the first understand the meaning of a doctor’s letter when a doctor writes for a patient to take a medication and says you need it to live, which mine has done since age 9.

You think he would understand as well as the governor,  how important it is to look after the safety of people with epilepsy and not allow them to be injured. I was.

 I was talking to Harry Reid about raising the cost of living index to $1200 a month for all people on SSI and SSDI. 

I still have pictures of the first place I lived in when I first moved here.  That horrid $728 a month buys nothing  in terms of living quality and your standard of life. All you have to do is  think and care and be a responsible person realize that along with all inflation and elevated prices going up, the cost of living index for all disabled people  hasn’t been raised in over 20 years.

SSI is $200 less than what California has per month. Who created an SSI (supplementary Social Security) of $728 anyway? A monkey with an abacus?  Everything needs to be updated  to reflect 2017 prices. Make the minimum BE $1000 for God’s sake! Round it up. Turn the insulting, impoverished amount in to something a human being can really spend, not just make due in the real world. $1200 is actually usable and workable  for the average person.

 Anybody who thinks that SSI and SSDI checks are handed on a platter they are not you are sadly mistaken.


Image from Pinterest.

Lawyer Bill LaTour won my case in Southern California and I can’t count all of the doctors I went to and specialists and career counselors and all the questions I had to answer and psychological assessments in order to finally present my case. Most who are disabled would rather be working. In the final hearing all of the doctors and the career counselor appeared in a small courtroom and they’re the judge asked me what my name was and after about 5 minutes he reviewed all the evidence presented by every one of the doctors that I had to see you over the course of a year and a half before he finally awarded me ssi. That took a mere five minutes and those were the only words that I other than that. 

You can’t sue the government but you can sue people who work for the government.  And one by one I will if I don’t get my Paratransit FOR MYSELF AND SET A PRECIDENT FOR ALL WHO HAVE EPILEPSY IN THE STATE OF NEVADA. 

After all, I’m the former President and founder of The Epilepsy Connection which was a grassroots organization in Orange County, California  that helped countless people in California and many other states, and three other countries who had no other resources whatsoever. I’m also the former director of the Epilepsy Foundation sub affiliate in Garden Grove, California years ago. 

In other words, I am a catalyst for positive change and I hope to  merge forces with other disabled people making us stronger as a united team.


 I’ve got arthritis in that left ankle that won’t go away, just as my dad was  just about paralyzed in a wheelchair from osteoarthritis  before he died several years ago.

After having a drop seizure- due to being out in 115 degree heat when I shouldn’t have been.  That because I was having problems but two idiot’s went against my epileptologist’s letter stating that. I think that’s a crime isn’t it? 

DAN HOWLAND AND JIM CHAMPOU, THE IDIOTS WHO DIDNT VALIDATE THAT DOCTOR’S LETTER AND THOUGHT DR. EVANGALISTA WROTE IT FOR THE FUN OF IT, INSTEAD TO PREVENT INJURY TO ME.

Maybe no lawyer in Nevada has wanted to take my case YET, IT IS A crime AND A  double crime since Dan Howell and told me he didn’t care about people with epilepsy to my face  and he said he didn’t care about learning about anything to do with them he liked being ignorant. After everything  hits the fan and people pay the price they should have paid a couple years ago but I wasn’t any kind of health condition  to be able  to press charges, I hope he’s fired  and not only that I hope charges are filed on him  for endangerment and that is endangering me.

I believe the max I can do is $10,000  in the state of Nevada for him personally and  also Jim shampoo $10,000 and also Tina Quigley, the head of RTC , who all she could say during our phone conversation was “uh huh” after I said anything.  In other words, she did nothing and could have been forced my Paratransit ID once suck it but she did not. That’s another $10,000.

 They put my life at risk because I was having drop seizures of time and that was written in the letter so that’s called personal injury and I with all the evidence that I can bring which is a hell of a lot of it I call it instant win.

It is the principle here. I am hoping I won’t need to and they will come to their senses. Maybe the  Governor can hear the whole sordid story and make it right trade she seemed like the most level-headed person in the most articulate intelligent person I’ve seen hold office in Nevada so far.

 I think Nevada has some disabled Senators who have disabled minds and need to greatly educate themselves about what all this abilities are an update themselves with 2017.

Civil rights and then do the educate themselves on disabilities that go far beyond physical ones in a wheelchair.

The statistics on disability is there are more people with invisible disabilities like epilepsy than those with more visible ones.

California was better with Paratransit by far.  I had Paratransit in California over 25 years and I come to the 1800’s Wild West High Desert of Nevada and here they turn me down. I called Paratransit once waiting 2 hours and after the two hours the lady said, ” oh didn’t you know? Just because you call Paratransit doesn’t mean it’ll show up!” 

Ignorance again.   

You shouldn’t be a leader in the state if you are igorant in the ways I have seen. Dina Titus, Head of Transportation had no desire to help me get what I was owed as a disabled American citizen.

Nevada Medicaid pays for my medicine now and I hope it always does because it’s the best combination I have ever been on in my now 55 years young.

 

 

Even all that being said Senator Reid doesn’t think I have a disability-isn’the that rediculous? 

I even sent Senator Reid pictures of my medicine and all the vitamins that I take and the doctor’s letter from my specialist who prescribes my medicine and the copy of my medical ID bracelet and he still didn’t think that I was disabled!

 Living in Nevada is like living in the wild west where they think they can do anything. The American with Disabilities Act is something that I know all about  and because I was turned down for Paratransit here I could sue every senator in the entire State and when  because my civil rights were violated and I broke my left ankle as a result of having a drop seizure a year ago and was nearly in power chair after! Was I disabled enough for you then Nevada  huh 7 read  the governor ? Is that what you want to but everybody Wheelchairs and that’s the only kind of stability you think exist in this world ? Wake up  you need to get your head examined and go look at the medical book and read it all of this abilities that exist in this world there quite a lot of them  we have a lot of components to our bodies not just a physical body  without your neurological system you’re nothing you can’t write you can’t speak you can’t do anything.

I now have arthritis in that left ankle, which makes might a personal injury case that I didn’t want come into the state I just wanted a place to live it was cheap that’s it I didn’t come here for the gambling  I don’t drink I don’t smoke I don’t do drugs and I don’t gamble why did I come here for cheap rent that’s it hat’s part of living in Nevada is not something I like but it’s also against my civil rights too. 

I’ll be talking to the governor of Nevada this year about all of those issues as well as others that affect everyone or just same old and about raising the cost of living index for all people who are disabled to something that allows them to live in dignity, which the $728 a month does not.

I want to see that all people can afford tm what they need to keep them alive. 

Hear that pharmaceutical companies? 

Remember the human element. 

Remember why you’re developing the medicine in the first place.

 What good  is a fantastic medicine with a high efficiency rate and the low side effect rate and a huge success rate if the patients cannot afford it? I’m asking you that question mark I was made a rocket scientist for 15 years and I’m fairly bright that’s not even logical is it to make the price outlandish.

If drugs are so outrageously priced limiting who can take them, it defeats the purpose why the drug was ever created.

 I wish the scientist who developed the drugs could price the drugs because then they would be priced at something reasonable that makes sense. 

Because people who are scientists creating these compounds to help people would never charge people outrageous prices because they’re more humanitarian in spirit than the simply sales reps promoting the products getting huge commissions driving company cars!

 Let the pharmacology medicine developers help set a price that is more accurate.

 I saw pharmaceutical reps every time I went into one of my neurology offices in Orange off La Veta when I was married years ago.  I think what they do should be against the law because they’re giving doctors Kickbacks to promote drugs. because of that, doctors are  not looking at to the best needs of the patient. The Pharmaceutical reps  are allowed to  dangle money in front of a doctor’s faces and saying over here I’ll give you this money -a bribe.

How in the hell can a good doctor think straight  with the ” Wheeler Dealers” walking around dangling incentives.

Pharmaceutical companies remind me of real estate companies in California. Everybody is so greedy that they have to make “over profit” aking for way more than is affordable for most everyone except millionaires. 

 Medicine companies: Remember the people FIRST. Without people in this world you have nothing. Nothing but dust and a bunch of chemicals a test tube that people NEED.

Written by Paulette Motzko on April 5th 2017 at 12:48 p.m. 

This is story was aired on Totally Inspired Mind: Where Posititive Minds Congregate and Beautiful Soul Shine.

TotallyInspiredMind.com

I created the following document on my Galaxy Note 4 Phablet and the edits are coming in on my Samsung S2 tablet. My phablet  overheated just like I do when I even think about the things that I’ve been through for no good reason.  I almost was history in this town so rather than be history I’m going to make history instead, making it better for everyone.








Edited  April 5th 2017 at 3:36

Written by Paulette Le Pore Motzko 

Maximizing Social Responsibilty in America & The Realization How All Life Is Connected

Written originally three years ago today by Paulette Le Pore Motzko
Copyright October 27th, 2013

Updated by Paulette Le Pore Motzko October 27th, 2016
Images of Earth, Undersea Diver with Fish, Beach & Starfish, President Obama from Pinterest, Authors Unknown Sources from Pinterest

Minimizing Apathy and Maximizing Social Responsibility in America

Written by Paulette Le Pore Motzko

Copyright October 2016

Totally Inspired Mind: Where Positive Minds Congregate

Http://www.TotallyInspiredMind.com

  

I was trying to put into words the term for when you do something just because it is right but not because it EASY or THE STATUS QUO.  A fellow writer and blogger friend of mine called it “moral courage” the other day.

We are all connected on this big, water covered planet we call earth. There is only one of them, so if we mess it up or the people who inhabit it, we never have a chance to go back and fix it. Life on earth as we know it is a “one shot deal” so we better get it right the first time and quit living as though everything is expendable.

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We have a throwaway society anymore and people and the apathy towards people in general has gone along with the trash we throw away. It shouldn’t be and I am not saying that all people are apathetic, because of course they are not. There are just many who could do far more than they do for others they meet in everyday life.

Once the water systems are polluted, what do we do?

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Just these thoughts are good ones to ponder in terms of how we should be making sure there are no oil spills killing our fish and wildlife and ruining the water.

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Human beings have a lot in common with the earth in that they are both mostly composed of water. Without it, all life ceases to be.

What about bombs and the warfare, chemical or otherwise? Since I was married to a rocket scientist and he was the master of logic and science; since we were married for fifteen years, I chose to take with me the best of what I learned and the best of our memories together. Why throw a bomb that will kill thousands of innocent women, children, and ruin the land around it, making it impossible to plant anything-just to wipe out that one “target”? It isn’t logical to me.

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Why not find and train more people who speak the languages of the countries we are fighting right now, or at least have our military people in like Afghanistan and Syria?

Try something you haven’t tried before.

Success models are made up of prototypes that worked. Once you know the model, you can strive to create one that works as well or supersedes it.

How about our budget that the so-called great leaders in the United States of America have concocted?

Above wallpaper image from Zedge.

There has not been any trace of anyone from the two Bush’s to Reagan who has ever tried to come up with a budget that would start paying off the debt already incurred. Obama keeps spending and China owns more of America. It’s like a dirty American secret that nobody wants to take accountability for. 

Will our next president of the United States make sure the priorities are in the right places? I certainly hope so, but rather than seeing human beings who invented great leadership skills, I see Trump as an overgrown brat who tragically never grew up. I see Clinton with major trust issues going in the office, after breaching national securiy. Wish you did with a lot more than just sharing emails! People lost lives because of those emails and that cannot be overstated.

 I haven’t sat through one debate becauase it is not one by true definition.  A debate is where people are asked intelligent, hard-hitting questions and they answer them , and an intelligent  fashion .  Trump  and Clinton are good at insulting each other and name calling and badgering. I had little tolerance for badgering in elementary school and I have absolutely zero tolerance for that kind of behavior now.

Is there some kind of moral conduct and we can demand that of our presidential candidates?
It’s almost as though you need a referee make in a boxing match.

 

‘ve never seen a time in our political history where we’ve needed in an actual referee like it’s a boxing match verses to great minds talking about what they would each do. We never had that in the election from the get-go

I am not sure what kind of actual good they can accomplish, since they are not showing the best of who they are when that is exactly what they should be doing!

This is idiocy and being that I was born and raised in The United States and never want to see the day when China owns America.

What is going on is a vicious cycle of stupidity, borrowing on China’s credit and we are looking the fool in the eyes of other countries.

Before I get on a this one topic alone, that infuriates me at the stupidity and complete lack of responsibility on the parts of all who work for the government for not prioritizing paying the debt of the USA.

I hope I see the day when a budget is created and adhered to. I hope I see the day when we have a new president who has one known social security number, and stands for things that benefit Americans instead of big businesses.

I hope I see the day when you can get a job in America without having to know Vietnamese or Spanish, when it is America you are trying to get the job and not Vietnam or Mexico.

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I hope I see the day when people try to be more kind and tolerant of each other’s differences.
Movie makers, producers and directors put positive and empowering messages out there instead coming up with a crime show give goofballs and psychos ideas to blow things up and kill people in movie theaters. Values can and could dictate our society, if we all wanted that badly enough.

I hope I see the day when our president realizes that every action has a chain reaction be it a bomb, something that is not needed that tax payer’s end up paying for. China is buying more of America up every day as the imaginary credit card is used.

They print up so much “play money” that I don’t think they understand in the real world, for you and I and everyone else, we all have to pay our debts. Why isn’t the White House and those who write the checks accountable as we are?

Breaking laws to fit personal agendas doesn’t make me proud of the current leadership. Can’t we as Americans demand to see how the money is spent? They are working for the American people and are supposed to be our ambassadors.

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What are your major concerns for our country? What would you like to see happen in the next year in America?

Please Mr. President Obama, well you’re still president- open your eyes, wake up and be accountable for what you spend regarding our country.

Students arming Syrian terrorist and creating Isis why don’t you look at all the veterans who have no homes?

What did you think of raising the cost of living index for all people who are disabled on SSI and SSDI?

Why don’t you see that every American in every state can live in dignity and peace and have all their Corporal needs met before you think of taking money we don’t have and giving it to other countries?
NOW is a good time to create and adhere to a workable budget, not just hype.

Start caring and acting responsibly and care about America being owned my Americans and how we take care of it now is the gift we will hand down to our children.

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Love, not pity, was 5-year-old Julianna Yuri Snow’s lesson

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Julianna Snow’s Light will never ever grow dim. I am saddened that the world will not be graced by her presence any longer. For never having met her, she touched my heart and soul in a way nobody has.”

– Paulette L Motzko

June 21st, 2016 at 8:37 p.m.

Love, not pity, was 5-year-old Julianna’s lesson
http://www.cnn.com/2016/06/21/health/heaven-over-hospital-julianna-snow-reflections/index.html

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Paulette Motzko author/blogger at The Red Rock Resort recently

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In my humble abode with books and teapots in view.

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Of all the photos I created, this one reminds me of Julianna Yuri Snow the most.

God bless your wonderful, sweet courageous soul Julianna Yuri Snow.

You touched my heart and I never got to meet you.

Your story touched me and because I am a caring lady,  tears are streaming down my cheeks,  which us not what you wanted, but I love tea parties too and only wished you could have experienced many MORE of them!

My most sincere condolences to the extraordinary Snow Family. You are as courageous as your sweet daughter, just in a different, supportive way.

Paulette Le Pore Motzko
June 21st, 2016 at 8:20 p.m.

Updated on June 22nd, 2016 at 9:22 a.m.

More victims found; 13 people missing

More victims found; 13 people missing
http://www.cnn.com/2015/05/27/us/severe-weather/index.html

God bless the entire state of Texas and I hope that those who are missing because of the ravaging floods, are found healthy. It has been a few days since I checked the United States news. I have no TV or cable, so I have to get the news off websites and the news station sites.

Paulette L Motzko
May 2015
3:07 a.m.