When $65,000 a year for a drug is applauded
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 crime, human 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 non–smoking 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!”
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.
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