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 

Relaxing Background Guitar Music & How Creating An Inspiring Environment by Paulette Motzko

https://music.youtube.com/watch?v=Xv1Yx3eFnEg&feature=share

I love this beautiful acoustic guitar play list.  

If you are a creative person just like I am, the key is to find out to flowing inspiration is to know in an intimate way what environment helps you create the best in yourself.

 Keep repeating it over and over again. What works for you will be different than anyone else. 

Things that inspire me are…

Beautiful natural surroundings are beautiful places

The Pacific Ocean

Majestic mountains

Enchanted Forest’s

Inspiring workplaces that are conducive to concentration

Special music playlist and help bring out the best in your artwork. This could be writing, this could be photography, this could be cooking or painting or some other art form.

The special place that everytime you go there you meet someone extraordinary. I have several places like that and I don’t even question what happens I just know it happens. Will meet someone who is absolutely extraordinary every time I go to this certain location. If you pay attention you’ll find then you can maximize the positives in your world. Just pay attention and follow your instincts and usually always steered in the right direction.

And lastly I do a lot of meditation everyday I’m prayer and centering thought hoping to create something I feel give something back to the universe, and will last long after I touched the face of God.

Written by Paulette Le Pore Motzko

Painted Picture photographed & Created by Paulette Motzko

October 22, 2016

9:33 a.m.

 It’s a learning curve when you’re a writer or a photographer or an artist it would never put you in the right frame of mind, and helps you create the best that is in your soul- then do it.

Watch “Jason Mraz – I Won’t Give Up [Official Music Video]” on YouTube

https://music.youtube.com/watch?v=O1-4u9W-bns&feature=share

I love this song and the video shows how you can triumph over adversity and you are the same no matter what. Also, it shows love can triumph over any set of circumstances.

Awesome job #Jason Mraz!

From one southern Californian to another who loves the palm tree studded Pacific Coast Highway.

 I can’t wait to go back and see my friend’s and the beautiful beaches.


The beautiful Huntington Beach Pier in Surf City, CA.

Written & Compiled Paulette L Motzko

Images by Paulette Motzko, 

PLM Studios

Copyright October 2016

October 19th 2016 11:36 a.m.

Watch “Relaxing Harp Music: Help You Enhance Your Life, Sleep, Meditation, Spa, Study | Instrumental Background Music ★49” on YouTube

https://music.youtube.com/watch?v=dCvEgqePl84&feature=share

This beautiful and serene video and soundtrack has water sounds on the music track with a solo harp.

The photo slide show is of nature scenes. 

I hope this adds some beauty and joy on your lives today.

Written and compiled by

 Paulette L Motzko 

Image photographed by Glenn Clayton.

Photo Editing and Digital Arts by Paulette Motzko 

Copyright October 2016

Beautiful Chinese Proverb

As I was reading the inside forward of the first of the series of Chicken Soup for the Soul books by Jack Canfield and Mark Victor Hansen, I spotted this beautiful Chinese proverb which I will share with you because it’s enlightening in so many ways and it shows how we’re all connected on this planet and one thing has a chain reaction.

If there is Light in the Soul, there will be Beauty in the Person.

 If there is Beauty in the person, there will be Harmony in the house.

 If there is Harmony in the house, there will be order in the nation. 

If there is Order in the Nation, there will be Peace in the World.

Written and compiled by Paulette L Motzko

Painted Picture of The Huntington Beach Pier, by Paulette L Motzko

PLM Studios

October 8th, 2016 at 5:51 p.m.

Paulette Motzko Welcome’s Cooler Days in The High Desert

Above image created by Paulette Motzko, Copyright September 2016

Photograph of Paulette Motzko taken by my manager friend who works at Blueberry Hill- when I first moved to Las Vegas. The background image was photographed by me in Vista, CA as I was walking down the street to go to the Vista Library and I loved the shapes of the leaves on the trees there. Vista in San Diego County is totally different than Orange County in that it is more hilly and has more types of lush green foliage.

The images were united last night with a sophisticated blending and blurting app I installed yesterday. 

So, in that photo three different times were involved and would different geographic locations.


Wherever you are today, take time to look at Nature’s Bountiful Colorful Gifts growing around you. 

Get out your camera and immortalize them.

A great photograph says the world without ever uttering a word. 

It is a silent, visual communicator.

Fall in Las Vegas, NV reminds me of just about every day in beautiful southern California with it’s cool Pacific Ocean breezes.

 I would much rather wear a jacket and be cool than sweat or bake like a human cookie in 115 degree heat.

One beautiful fall day I was able to see what Autumn looks like a New England in Vermont. I’ll never forget it because I was going on a business trip with no EX yes she really is a rocket scientist with bowling working on the Delta rocket. Later their marriage, because he traveled so much, I was able to go on a few trips with them and the hotel we stayed at was very strategically pickrf yo be by shopping and restaurants all walking distance-because I dont drive. I’m my mind”s eye, and I do have  very vivid memory, so I will paint the picture of what I saw on that serene afternoon in Vermont:

I was so fascinated with the fact that the towns were so quaint and Charming but nothing like the big city in Southern California that I was used to. All the properties had you Jones and green like as if you painted them or drew them with the kids Crayola crayon set in green. It it just rained and you could see a white Chapel, just like out of Currier and Ives that was so pristine and quaint and Charming maybe want to go inside look around. Hit my ex been a Christian guy and said agnostic we probably would have done just that. But the memories I have of Vermont in the autumn are so wonderful.

I wasn’t a published writer then and not one of my blogs had been created yet. This was 1990.  I want to go back either to Vermont in the Autumn in the future when the leaves are Ablaze with the colors of red, rest, dark green and the foliage comes in about every size and shape you can imagine.

When you grew up in the big city with nothing but towering palm trees that rise to the sky and beautiful blue expanses beaches and ocean- up and down the Pacific coast…. places like Vermont are refreshing, not so much even for the scenic countryside, but for the great and totally genuine people I met while passing through.

 People in small towns have more time and more patient and it’s like going back in time to a simpler, gentler time when people stayed off smartphones- because they didn’t exist and  made eye contact more and people were the most important thing.

There’s so many wonderful places but I want to go in the United States but I’ve seen just mere vignettes or samplers of what I know is to come.
Written by Paulette Le Pore Motzko