Saturday, September 20, 2014

Food Allergy Bloggers Conference 2014 - Live Updates and Schedule Information

We are less than a week away from the Food Allergy Bloggers Conference for 2014! Last year was fantastic and this year's conference looks to be pretty spectacular, at least in my estimation. :) As I mentioned in last year's post, I am very grateful to be able to attend this conference and want to provide information for those who are unable to join us, and provide a central place for following the social media action.

Before I do, I'd like to take a moment and give a huge THANK YOU shout-out to the dynamic duo - Jenny Sprague and Homa Woodrum - who have worked so very hard on organizing this event. I cannot fully explain how hard these two amazing women have labored to bring this event forth!

This year, the conference schedule is available through a handy site called SCHED.org. You can view a list of speakers, create your custom schedule, etc. You can access this site and get your free account at FABlogCon14.Sched.org. The website's mobile version functions as an "app" on your mobile device and is great for keeping track of your personalized schedule.

To add it to your iPhone, open Safari (browser) and enter "FABlogCon14.Sched.org" (it is not case-sensitive). Once you are on the site, a prompt will appear on the bottom, asking if you want to add the "app" to your Home Screen. Once added, it will appear on your Home Screen, along with your other apps.
 

For Android devices, you can follow a similar procedure and open your Browser, navigate to the site, press your phone's menu button and select "Add Shortcut". If you press the menu button within SCHED, you will see a list of features to peruse.

 

You can visit SCHED.org's Support Center for a helpful video explaining the site's many features.

Here are some other widgets to help you follow along with the #FABlogCon fun!

@AmazingAtopic Tweets

#FABlogCon Tweets

Instagram Feed: 
Disclosure: I have been compensated for my time in assisting with preparations for the conference. All opinions, as always, are my own. 

Thursday, September 18, 2014

Why I Always Contact Food Manufacturers


I would like to take a moment to explain a bit about how I reached the point where I email/call every single company to vet each new product that my daughter eats. I no longer go by what I see on the label, alone.

Probably the first step in the evolution of my food product management process was the infamous "Milk Incident of New Year's Day 2011" when I gave my daughter bread I had made from a bread mix that I had chose by mistake. If I had called the company before trying out the product, I would have found out that they make milk products on the same line and those mixes would have been eliminated as options. 

Another thing spurring me to call/email every company is my daughter's flax and sesame seed allergies, since they are not a "Top 8" allergen, and therefore not covered under FALCPA. (Even if she didn't have allergens beyond the "Top 8", I would still continue to call/email, given my experiences with companies, thus far.)

The most compelling experience, to date, would have to be the "store brand" labels incident, which I thankfully encountered with an item that was not for my daughter's consumption. Even though I had already learned that the label didn't tell the whole story, I was still shocked to see two identical products (under different "store brands") with differing labels, and voluntary warnings only on one of the item's packaging. 

Lastly, here is the thing that strengthens my will to keep contacting companies to get as much information as I can. Any fans of the show "How It's Made"? I love that show, and my daughter and husband always laugh at me, because every time I watch an episode, I invariably say, "WOW!" at some point during the episode. It really is amazing to me how much goes into making so many products than we might think. I have watched this show for years, but what has caught my eye, now that I have "allergen-spotting eyes," is the view into the makings of food products. Here are some small snippets of the kinds of things I see on these episodes:  




After seeing "behind the curtain," I am keenly interested in just what is going on at a factory that is making food that I might feed my daughter. I want to know as much as I can about their manufacturing procedures, labeling practices, etc. That kind of information is not present on a label. You have to contact a live human being and even then, it can be hard to get at what's really taking place. 

I typically use a phone call for a quick answer at the store, to see if it's even worth bringing home, but I try to use email as much as possible, to have a record of the response to which I can refer back and to give them time to research an answer. Many times, on the phone, they have to call me back, anyway, due to my questions about flax and sesame. 

I know that everyone's situation is different, but I just thought I'd share how I manage things, in case it can be of some help to others navigating this food-filled world! 

Sunday, August 10, 2014

Obtaining Auvi-Q Epinephrine Auto-injectors - Problems and Solutions


Top: Auvi-Q 0.15mg - Box and Contents
2 Active Devices, 1 Trainer Device and accompanying printed materials
(Updated to add:) Bottom: Auvi-Q Vouchers

Here's a summary of the recent problems that parents and caregivers have been having, 
when trying to obtain their Auvi-Q EAIs, along with possible solutions:
(This information pertains to patients in the U.S.A. and is presented to the best of my knowledge. 
Offers and conditions can change at any time, so please check directly with the pertinent company if you have any specific questions.)

Problem: I am having trouble getting my Auvi-Q prescription covered by my insurance company.

Solution(s): Patients can have their doctors submit a Statement of Medical Necessity to request "Prior Authorization" for the Auvi-Q. For Express-Scripts, your doctor can visit this website to submit the request by phone, or online. The following is an except from that form, showing some of the reasons that may qualify someone for an exemption:

If you have another prescription provider, you should still be able to use this form. Sanofi's Patient Connection site has other forms that might also be useful for appeals, etc.

Want some even better news? As of 1/1/2015, the Auvi-Q will return to the Express-Scripts Formulary, as a "Tier 2" medication, meaning it should be covered by most insurance plans! They were finally able to overcome the exclusivity contract brokered by another epinephrine manufacturer, and now freedom of choice has been restored to families in search of epinephrine! This change has already taken place with Caremark, as of 7/1/2014. (Updated to add: As of 1/1/2015, the Auvi-Q will also return to Tier 2 status for those covered by Aetna Value and Aetna Premium insurance plans!) If you use another prescription provider, contact them to let them know that you want the freedom to choose the life-saving device that you feel best suits your family's needs.

The $100 Co-pay Card offer will also still be in effect for the foreseeable future, but you can always get the latest information at www.auvi-q.com/savings. It offers $100 off the insurance co-pay, or $100 off the retail price for those paying out-of-pocket.



Problem: I was able to obtain a prescription for my Auvi-Q, but the set(s) I received from the pharmacy expire(s) in less than 12 months!

Solution: Fear not! Sanofi, makers of Auvi-Q, are offering a generous resolution to this issue.
Oh Mah Deehness posted this tidy summary of the information that Connie Green and a few of us received from Sanofi on the issue: "Patients or caregivers who, within the last 31 days, purchased an Auvi-Q that expires in less than 12 months are eligible to receive a savings card with a maximum benefit of $400 off one two-pack of Auvi-Q for each Auvi-Q purchase that meets the terms and conditions. Savings cards are valid for use January 1 – June 30, 2015.  Patients or caregivers who purchased an Auvi-Q in the past 31 days with 6 months or less of dating may receive a replacement Auvi-Q or they can opt to receive a savings card.  For more information, including terms and conditions, patients or caregivers should call Sanofi Customer Service at 1-800-633-1610." (If that number doesn't work, you can also try 1-800-207-8049, Option #5 and then Option #1. Thanks for the tip, Julie Brown!) Note: "In the past 31 days" means that you need to submit your request within 31 days of your invoice date, not within 31 days of the blog post.

I called the number when my EAIs arrived with an expiration date of April 2014. I was asked to provide visual proof of the quantity purchased, expiration date, lot number and the invoice date. To do so, I took a photo of the bottoms of my Auvi-Q boxes and a snapshot of my invoice from Express-Scripts. I was given an "Inquiry Number" which was required for submission. They offered me the choice of submitting the information via email or fax. It was a 6-minute phone call, according to my phone, and it took me another few minutes to send the email, so I'd call it a 10-minute process, tops. This is a pretty amazing deal, considering that my devices are good for 9 months and when I request my sets using their vouchers in June 2015, they could be good for another 6-12 months, providing me with 15-21 months of epinephrine coverage for that single co-pay! (Also, I could have used their $100 co-pay card to cover that cost, but was simply done with dealing with Express-Scripts and just let is slide.) (Updated to add: I received by $400 vouchers in the mail! It took 20 days for them to arrive, which is no problem, at all, given that they are not valid for use for another 4 months.)


Problem: I am unable to afford my (or my child(ren)'s) Auvi-Qs.

Solution: Epinephrine is a potentially life-saving medication and no family at risk for anaphylaxis should have to forego it, during times of financial hardship. The Sanofi Patient Connection site has information and a form for the Patient Assistance Program. Some may be surprised to learn that they qualify for assistance under this program. The form includes a complete list of requirements, but, for example, the income requirement for a family of four is that it be under $59,625. (This is 250% of the U.S. poverty level at the time of this writing.) It's worth looking into, if financial strain is an issue.



Those at risk for anaphylaxis, and those who care for them, must have epinephrine on hand, at all times and they should have at least 2 doses. Please do not let anything or anyone stand in your way of getting what you need to protect yourself or your loved ones.

Disclaimer: I am not a doctor, nor a medical professional. Always consult with a doctor before making any healthcare decisions. This is not a paid post. A year ago, I attended a summit at the Auvi-Q headquarters, along with other bloggers, as invited guests with expenses paid, to see the Auvi-Q before its launch. We were never, and are not currently, under any obligation to write about or promote the Auvi-Q.

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