POKWASPA Parents Of Kids With A Severe Peanut Allergy Group

POKWASPA Parents Of Kids With A Severe Peanut Allergy Group
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Saturday, October 1, 2016

Focus group for epinephrine pen in Orange County, CA








Notice: As of October 1, 2016, all members of POKWASPA, (or anyone requiring epinephrine for either themselves or for their children) living within driving distance of Orange County, CA are invited to participate in an Epi pen focus group being organized immediately. 

If interested in participating, please contact Jennifer Fernandez, at jennifer@resolutions-llc.com or refer to her contact info on her business card. (See attachment.) Please address all inquiries and questions to her.

-- Thank you, Louise Larsen







Follow me at: LouiseOnTheLeft.blogspot.com or at ParentsOfKidsWithASeverePeanutAllergy.blogspot.com

Friday, August 26, 2016

New York parents, insurers raise concerns about rising EpiPens costs, from Politico


By ADDY BAIRD | 08/25/16 06:59 PM EDT

In 1998, a friend left a jar of peanut butter in Louise Larsen’s fridge. Her daughter Juliet, a year and a half old at the time, grabbed the peanut butter and took a bite, and then she went into anaphylactic shock.

Larsen remembers seeing her daughter’s eyes roll back in her head, and she called 911. At the hospital, the doctors told her there was a chance her daughter wouldn’t survive the experience, but she was lucky.

Ever since the day some peanut butter almost cost her her child’s life, Louise Larsen, who now runs a Facebook group with nearly 10,000 members called "Parents of Kids With a Severe Peanut Allergy," has been sure to keep EpiPens around. And she's been sure to have her daughter, now 19 and in New York at Barnard College, do the same.

The small injection device can reverse the effects of an allergic reaction, and for people with allergies as severe as Juliet Larsen’s, it can be lifesaving. For a long time, too, the pens weren’t a big cost.

“There was the deductible and then it was covered... The doctors were like, ‘Here, take six,’” Louise Larsen said. So she would. She’d get a pack of two for herself, one for her daughter’s backpack, one for her husband, one to send on playdates, and more to have around just in case.
“Everything seemed average until about 2013... [then] I noticed that the EpiPens were going through the roof,” Larsen said.

Since 2009, EpiPen maker Mylan has raised the prices of a standard pack of two EpiPens 400 percent, from close to $100 to about $600. And in the last few days, the cost concerns Larsen and parents like her have had in recent years have become national news.

Sen. Amy Klobuchar, a Democrat from Minnesota, called on the Senate Judiciary Committee Saturday to investigate Mylan's price increases. The committee’s chair, Iowa Republican Sen. Chuck Grassley, wrote a letter to Mylan Monday saying the price hikes have caused “significant concerns.”

On Wednesday, Hillary Clinton's presidential campaign entered the ring and released a statement echoing Klobuchar. “That’s outrageous,” the statement said of the price raises. “It’s just the latest troubling example of a company taking advantage of its consumers.”

And on Thursday, New York City’s First Lady Chirlane McCray weighed in with an op-ed for the Washington Post. McCray shared that she is allergic to tree nuts and her daughter Chiara de Blasio is allergic to peanuts. They both carry EpiPens.

“Some children will have to go back to school without this medication because their families can’t afford it. That is unconscionable," she wrote.

On the phone with POLITICO New York Thursday, State Assemblyman John McDonald, a practicing pharmacist who has sponsored a drug pricing transparency bill in the Assembly, called the price hikes an “insult to America’s intelligence.”

In the wake of the criticism, Mylan said in a statement Thursday that the company would expand its patient assistance program to 400 percent of the federal poverty level, which would make a family of four making up to $97,200 eligible to apply to get the pens for free. Mylan also said it
page2image22584 page2image22744 page2image22904 page2image23064 page2image23224 page2image23384
plans to offer a $300 rebate to customers without insurance or with high-deductible plans, which would cover approximately half the cost of the EpiPens.

Clinton campaign spokesman Tyrone Gayle said Thursday that rebates would be “insufficient.”
“Discounts for selected customers without lowering the overall price of EpiPens are insufficient, because the excessive price will likely be passed on through higher insurance premiums,” Gayle told CNBC. “Since there is no apparent justification for the price increase, Mylan should immediately lower the overall price of EpiPens.”

Rebates like this also wouldn’t help people like Heather Lessard, who doesn't meet Mylan's requirements and whose six-year-old son has a peanut allergy.

“I’m really happy that they’re going to be doing [the rebate], but it wouldn’t help my family,” Lessard said, who runs the No Nuts Moms Group in Albany.

Like Larsen, Lessard’s strategy is to make sure EpiPens are available to her child at school, on the bus, at friend’s houses, at home. And while her insurance will cover the cost of two two-packs of EpiPens, the cost of any additional packs would have to come out of pocket entirely.
Otherwise, Lessard said, her family simply has to hope that unused EpiPens from earlier prescriptions will do the job. “We have to play this game with going as far as we can with the expiration dates,” she said.

Lessard’s game is familiar to other parents, like Pamela Fernandez, who runs the Putnam No Nuts Moms Group and whose eight-year-old son has nut allergies. She’s been preparing for school to start for months, saving up prescriptions so that there are several packs available for her son.

Fernandez has been saving up because she knows the cost of paying out of pocket — she once paid $750 for a two-pack of EpiPens.
“I don’t even know what I would do [without them],” Fernandez said. “I would do whatever I needed to get that.”

The irony of the EpiPen is that, unlike other lifesaving medication taken daily, the hope is that it never has to be used. Parents stock up for their young children before school starts, sometimes paying huge amounts out of pocket, and the nightmare is actually having to open the package.

The nature of the EpiPen is perhaps part of what has driven the critical response to Mylan’s rebate proposal. After the rebate was disparaged Thursday, Mylan released a statement to POLITICO New York doubling down on the idea.
page3image21520 page3image21680

“The list price of medicines is different than the actual cost paid by patients at the pharmacy,” the company said. “It may seem counterintuitive, but because of the complex healthcare system today, lowering the list price would do little to reduce the cost that patients are paying, and wouldn’t provide any near-term relief.”

But that higher list price, at a minimum, can cost patients elsewhere.
“People get upset about the rising costs of premiums, [but] they reflect the rising costs of health care, including drug costs,” Leslie Moran, New York Health Plan’s senior vice president, said Thursday.

When the cost of Mylan’s EpiPen soars 400 percent, Moran said, if it’s not reflected at the pharmacy, it will be reflected in increased insurance costs.

“If you want something from the insurer’s perspective,” she said, “it would make sense to just lower the price.” 

Thursday, July 7, 2016

Philando Castile Was a Role Model and a food allergy hero

A national tragedy which touches our world:

Philando Castile, the innocent man shot yesterday during a traffic stop in Minnesota, was a food allergy hero. 

He memorized the names and food allergies of all the kids in the school where he worked. A national tragedy which touches our world: 

On behalf of Parents Of Kids With A Severe Peanut Allergy we deeply mourn his loss and are so grateful for all the good he brought the hundreds of children in his care at the school where he worked. 

May his life's work inspire others to follow in his shoes.



"Castile, who was known by friends as Phil, was a cafeteria supervisor at J.J. Hill Montessori Magnet School in Saint Paul, Minn., where he memorized the names of the 500 children he served every day — along with their food allergies, his former coworker said."




Follow me at: LouiseOnTheLeft.blogspot.com ParentsOfKidsWithASeverePeanutAllergy.blogspot.com

Saturday, June 25, 2016

Of all the gin joints in the world, Ricky Gervais should walk into hers?

Just to prove how weird and random life can be, yesterday my daughter, now 19 and the very reason I founded my Facebook Group, "Parents Of Kids With A Severe Peanut Allergy," was at her summer job waitressing at a trendy pub/restaurant close to the pier in downtown, Huntington Beach, Ca. 





As she opened up the restaurant, she looked up from wiping down a table to find herself peering into the very familiar face of, ALL people on the planet, Hollywood star and peanut allergy joke-telling Ricky Gervais, himself.  This happening  not even a full week post his appearance on Jimmy Fallon's Tonight Show where he pushed the limits of comedy with his attack on those with peanut allergies.  Something her mom (that would be me) had a problem with.

But, yesterday, when she looked up to see him peering in at her and the restaurant, she didn't have a snappy comeback ready as she was, as the Brits would say, gobsmacked by this simple twist of fate.

"Mom.  I look up and stared right into his face and just stood there smiling at how bizarre this was."

To Gervais's credit, he saw her smiling and grinned broadly back at her and waved cheerfully before heading off down the street.  -- "Just another fan!" I'm sure he thought.

But of all the coincidences....You really can't make some things up.






Later in the day she phoned after work laughing hysterically about this bizarre coincidence -- 

I said, "Next time, don't be so shy!   Step out the restaurant and say "Oh, hey! You're looking at the reason my Mum called you a wanker last week!" 

And of course if she sees him THIS weekend, she should just wish him a happy 55, because if you can trust the newspapers I hear that June 25th is Gervais 55th birthday.

(But, God knows I you can't always trust the media.  My husband is entertainment reporter for Orange County Register and he wrote more than one rave review of that pie-faced goon.  As did I, as well, on my remedial blog, Louise On The Left.)

Life is odd, indeed.







By the way, if you think Gervais had one shred of remorse for his rip on the peanut allergic, do check out some of Ricky Gervais's twitter responses to his negative fallout from his attack on those with fatal nut allergies:

Read:










Gervais is known as the "Cruelty-free comic" for his animal rights activism.
Unfortunately that empathy isn't extended to those who can die from anaphylaxis.




Well, alright, Mr. Gervais, fine then, don't apologize, you twit.  Be like that.

Note:  We can take a joke.  And we can make a point.  All at the same time.

It's our right.



Yours truly,
Mrs. 'Humorless C--t.'




Follow me at both blogs: 

LouiseOnTheLeft.blogspot.com 
ParentsOfKidsWithASeverePeanutAllergy.blogspot.com

Tuesday, June 21, 2016

Child says she is both scared and feels "life-threatened" as direct result of Gervais's joke about nut allergies.


More fallout from Ricky Gervais's joke:

Here's a video clip of this beautiful child, Kirsten Jones, who shares her reaction to Ricky Gervais's joke just so simply and directly, which is even more moving.

Watch:

----------------------------------------------------------------
Video transcript
----------------------------------------------------------------
Dad: How do you feel having watch this?
Kirsten: "Upsetted. Feel a bit life-threatened because he is saying
it's funny to do that to someone. And it's quite scary."
Dad: "Can you advise the viewers of your allergy?"
Kirsten: "I've got a severe peanut allergy and I'm anaphylactic to them.
Dad: "What's that like to live with?"
Kirsten: "It's really hard going everywhere and it's really scary for me, because everywhere I go even, if I'm just going out of the house, even, to the shops, to parties, on a plane, like what he just said, I feel really scared, it's really hard to live with because I always have to remember my medication. Yeah."
Dad: "If you could give Ricky a message, what would it be?"
Kirsten: "To not make fun of someone like that. It's not funny. Cause that's just a simple thing and your risking someone's life, well no, well you, you are risking it, because you're also...making someone die just from a simple thing like that."
----------------------------------------------------------------

Now, it's not clear if she's saying that what he said he wanted to do in his joke could kill someone or if she means if other's follow in his footsteps, they'd die, or what. Not sure.

One of my original points I tried to make right away, in my reaction to his comic shtick on Jimmy Fallon's Tonight Show was that his "clearly fictional story" (aka his joke) just might not be so clear to everyone who hearing it or that his hostility before, during and after it is also just humor.

Look, I get it. Some people are, as he laments on his twitter page "really stupid," (and they scare me too) but some are also KIDS. And kids are VERY LITERAL. Sometimes even innocent children do dumb things, which are very, very scary. Kids love his humor and so this is just one more aspect I deeply regret about his fictional story aka: joke.

And they all are listening to him. So he should take his platform very, very seriously. And last Friday he sure did not do that when sharing his joke about actually wanting to cause anaphylaxis, and how he'd do it, with NBC television viewers.

Follow me at both blogs:
LouiseOnTheLeft.blogspot.com
ParentsOfKidsWithASeverePeanutAllergy.blogspot.com

Sunday, June 19, 2016

Comedians and The Peanut Allergy Curse: Statistics not in favor of their having the last laugh. READ

(2016)  Not the first time I took on a comedian. I wrote to Joel Stein in 2009 about his anti-peanut allergy comments in the Los Angeles Times. He writes Op Ed now for Time Magazine. I didn't think his characterization about peanut allergy families were fair or warranted, so I confronted him about it.


Nut Allergies Yuppie Invention

Joel Stein's Los Angeles Times 2009 attack on kids with peanut allergies. Update: His kid got a peanut allergy.



(From 2009) 

As most of you know, if you've followed my blog in the past, then you know I have a severely peanut allergic daughter, who I am fiercely protective of.

I try to be understanding about how little people comprehend about anaphylaxis, but sometimes when they choose to be completely stupid, I just see red.

Last month was one of those times.

Just to bring you up to speed. I'd responded somewhat fiercely to Joel Stein's piece in the LAT a few weeks ago which ripped into parents of peanut allergic kids suggesting nut allergies don't exist and are a legit concern, that actually parents just trying to create and "specialness" for their peanut allergic kids.  And that was what was really causing peanut allergies.

I tried reaching him fruitlessly for a while until I finally heard back.

He said he wrote that piece because he was just "really stressed out since his wife is about to have a baby."

Yep.  That's what he said.

-----
Louise to Joel Stein, via facebook
January 10 at 7:12pm 


Dear Mr. Stein,

I invite you to read my open letter to you, regarding your Los Angeles Times piece called
Nut Allergies Yuppie Invention:  My first response to this can be found here.

Or you can just check out my facebook page(s)
Parents of kids with severe peanut allergies:

Or, better yet, why not meet me in person. Our six degrees of separation really aren't so far apart.*

Sincerely, Louise Larsen
---------


From: Joel Stein to Louise Larsen
January 11 at 11:48am


I'm really sorry about your son's allergies, and sorry that I hurt your feelings. I have lots of friends whose kids have severe nut allergies (all of whom I have to write a similar return email to). I'm about to have my first child this May and I'm worrying about everything that could happen to him already, so I can almost imagine how hard that is for you. I really didn't mean to imply that nut allergies can't be real. One of my best friends carries an EpiPen.

I get a ton of hate emails every week. If I write that airport security is overblown and nearly useless, I get emails from people whose family members died in a terrorist attack. You can see how this goes. So I'm used to it. But I still feel bad.

Joel


---------

Louise Larsen to Joel Stein
January 11 at 12:37pm


Um. Daughter.

DAUGHTER'S allergy. Not "son."

Give me a break.

And you did not hurt my feelings. You pissed me off.

You have hurt other people's feelings though. They've been send me your hate mail, because your inbox is TOO FULL.

I'm willing to bet that even this pathetic apology is just a sloppy "copy & paste" you are frantically sending out in response to your deeply offensive, ill-informed Op-Ed piece.

Did you even read my blog post about you?

You might want to. 

*Note:  I wouldn't have met with me, either.

2016 addendum to this particular post or narrative:  

I don't believe in karma.  


I would never in a million years wish a peanut allergy on my worst enemy.  


It's a terrible medical condition to live with or manage for your beloved family members.  All I have ever wanted is for others to stop demonizing it, take it seriously, and raise needed funds to cure the rise of life-threatening food allergies.



Saturday, June 18, 2016

Ricky Gervais: Total wanker for targeting nut allergies on Tonight Show.

A nut allergy is literally the EASIEST thing to make fun of these days. "Nut allergy." I have said it before, it even sounds funny.



Kids with peanut allergies are the EASIEST demographic to bully and make fun of. Like shooting fish in a barrel, easy.

LIKE SHOOTING FISH IN A BARREL, EASY.

So, if you want to see a comic desperate for material, wait for their attack on those with nut allergies. When they do, know this is a comic who's grabbing at straws.

My hope is that one day our children's life-threatening allergies will finally have the same protection from ridicule as do jokes about gay people, those who are handicapped, people who are from another race, or culture. But, right now, I guess they're still fair game. Bully bait.

Gervais's compassion for animals and support for PETA is where his empathy begins and ends. So, if his beloved cat, Ollie, was force fed something poisonous and then was filmed dying horrifically from that, perhaps this might be something he'd care about, just not a human being?  Okay.  Got it.

Gervais's joke is so much worse than Louis CKAmy Schumer or Larry David's (all of which are written about by yours truly here in this blog) by a long shot, because he literally says he'll intentionally cause harm to those born with a life-threatening reaction to nut proteins which clearly was a joke, a fictional story, but what if some middle school kid hears this joke then tries to do it? What then?

None of us REMOTELY asked for this allergy. We loathe it more than anyone else! But, surprise! it's here to stay!  Don't act like this disability is something we can avoid so you can go back to having your favorite snack food.  It's a disability.  Nobody wants this thing.

NOBODY DESERVES TO DIE BECAUSE YOU'RE A COMPASSION-FREE ASSHAT. An asshat FOURTH in line to make a nut allergy joke, because you can't come up with better material.

I'm just sad someone whose work I've admired for so long would make such a cruel joke about a physical condition which nobody wants and is so difficult to manage.  If your child has this, it's heartbreaking worrying every day something invisible to the eye could cause severe pain and death to your child.

I truly wish he hadn't done this.  I've loved his work, but this joke just goes too far when he says he wants to cause anaphylaxis.  Even though we know it's entirely a fictional story, a joke, for those of us who have seen our children nearly die, or worse, for the parents who have lost their children to this horrific allergy, we just can't laugh.  Anaphylaxis is a horrific way to die.  You either suffocate or your heart stops beating.

For the record, I'm not your average Gervais critic.  I own a DVD set of Extras, The Office, have Karl Pilkington books sitting on my shelf, podcasts on my iPhone.  I have a history of posting raves about his work over on my other more pop culture blog, Louise On  The Left.  So, it's with great reluctance that I point the finger at his schtick on the Tonight Show.    Read this review I wrote about his live show in LA from 2008.   I normally love his work.  Just not this one choice of joke last Friday night which included a detailed bit about finding nut allergies so annoying it makes him want to intentionally cause anaphylaxis.   Not that he'd care. (He doesn't.)

Clearly comedians still have a large, vocal, allergy-hating demographic to play to.  And he likes to say that if the world doesn't like every joke he floats, that it's not personal because he literally hates everyone.  He does.  And it's funny.  Watch.

What I find most interesting about that was later twitter posts calling anyone complaining about his joke (re: wanting to cause anaphylaxis) a "humorless cunt."  While that response is pure Gervais as well as his right, I also don't have to love his lack of awareness.  Especially when it 's  followed up with more twitter posts moaning "It's depressing how stupid people are."  Yeah, okay, mate, whatever.   Bottom line?  I'm a parent of a kid who I was told wouldn't survive her anaphylaxis the day we discovered her allergy.  This changes my perspective about this joke enormously.  And as far as I know, you're not a parent at all.  So, you do your thing. I'll do mine.    And that's life.  Right?

Truthfully, I have no idea why he chose that joke.  Maybe, like Joel Stein in 2009, he's expecting a first child, and real the reason he spewed all that bizarre hate toward this particular condition was out of some personal fear and loathing for it.  Well, at least that was Joel Stein's excuse when I called him out for his 2009  LAT rip on peanut allergic families.  Read how that TURNED OUT.




Sunday, June 5, 2016

Boston Globe story about peanut allergic child served grilled cheese sandwich filled with peanut butter at Panera Bakery after family alerted restaurant of peanut allergy.


So important every peanut allergy parent reads this Boston Globe story! 

In this story, the kitchen, apparently, (allegedly) glanced at the computer generated directives about the food order's  directive about "Peanut Allergies" and misconstrued the info.

This means that there may be some kitchen staff who rush through the reading of the "dupes" or internal kitchen orders and mistakenly interpret what statement about the food really means.  The implications of this problem for our children with life-threatening food allergies is massive. 

For instance if a restaurant mistakenly reads "Peanut allergy" as something indicating they should ADD peanut butter the consequences of this error could take a life.
















To be honest, in former my years as a waiter in NYC I know how busy a kitchen can get and have wondered about how such important issues such as those concerning food safety and food allergies are actually handled in the journey from taking an order, to food prep, and back again.

In other words, How information about life or death food allergies are conveyed both to the kitchen then back to the customer

Stay tuned to read more from Boston Globe on this story.   This paper's investigative team was the subject of recent film "Spotlight." -- In short, they are stellar.

I am very, very interested in how this case will proceed. It may very well change a great deal regarding food safety for our peanut allergic kids.

Monday, May 16, 2016

Trailer for "THAT BITES", a documentary made by 12 year old, Jack Yonover, about food allergies

THAT BITES! 
A FOOD ALLERGY DOCUMENTARY



Award Winning Documentary
Written and Directed By Jack Yonover


The Trailer:



Jack made a trailer for a film school project which turned out to be the beginnings of his movie, “That Bites!”. Many people he knew were very interested in the subject material. And after a very successful Kickstarter campaign, Jack embarked on expanding his film school idea into a full length documentary.




Watch Jack's Kickstarter video from his own webpage found here.

Wednesday, April 6, 2016

NIH IS SEEKING PUBLIC COMMENTS ON ADDENDUM GUIDELINES TO PREVENT PEANUT ALLERGY!

Public Comment on Addendum Guidelines to Prevent Peanut Allergy

jar of peanut butter
Peanut butter. Credit: NIAID
The public comment period on the 2016 Addendum to the 2010 Guidelines for the Diagnosis and Management of Food Allergy in the United States is now open. 
This addendum provides three practical recommendations, intended for health care providers and parents and caregivers, to prevent the development of peanut allergy in infants. These recommendations were prompted by findings from the NIAID-funded LEAP study, which showed that introducing peanut-containing foods to infants at high risk for peanut allergy substantially reduced subsequent development of the allergy.
These draft addendum guidelines were developed prior to the publication of the Enquiring About Tolerance (EAT)External Web Site Policystudy. Comments are welcome on the findings of this study and its implications. It is expected that the final addendum guidelines will be revised to include this published data.
The public comment period closes on April 18, 2016.