Thursday, January 19, 2017

The Auvi-Q Returns 2/14/2017!

Fans of the Auvi-Q will be in for an exciting Valentine's Day treat!


Auvi-Q Inventors, Eric and Evan Edwards

In kaléo's October 2016 press release, they explained: 
"After regaining the rights to AUVI-Q, kaléo conducted a thorough manufacturing assessment and invested in new technology and quality systems to ensure accurate, reliable and consistent delivery from the product. AUVI-Q is manufactured on an intelligent, high-tech, 100% automated robotic production line with more than 100 automated quality checks on each AUVI-Q, ensuring a streamlined and consistent production process."
Now, let's talk about how you can get the Auvi-Q back into your anaphylaxis preparedness kit!

Through kaléo's first-of-its-kind AffordAbility program, they are providing extensive, affordable access to the Auvi-Q for patients. Here are some of the highlights:
  • More than 200 million Americans with commercial insurance, including those with high-deductible plans, will be able to obtain AUVI-Q for $0 out-of-pocket.
  • AUVI-Q will be available free of charge to patients with a household income of less than $100,000 who do not have government or commercial insurance.
  • The cash price for AUVI-Q is $360, and will be available to those patients without government or commercial insurance. 
For starters, check out their FAQ, which covers the basics of the AffordAbility access program.

Here are some other points to keep in mind:
  • There are no coupons involved in this program (at the time of this writing) - You will obtain your prescription from your doctor and the cost to you should come up as $0. If it does not, the pharmacist can call 1-877-30-AUVI-Q (1-877-302-8847) for live assistance. 
  • On the AffordAbility site, look into the direct delivery option. You can have your Auvi-Q(s) mailed directly to you (or to your doctor) without going through your local pharmacy. This can help ensure that you get the best expiration dates available, and with shipment to your home, it can save an extra trip to the pharmacy. This option is available to insured and cash-paying customers.
  • The cash price only applies to a very small subset of patients with an annual household income is over $100,000, yet without commercial or government insurance. (Combining 2015 census information on insurance coverage and the average percentage range of those at risk for anaphylaxis, this price may only apply to 0.02%-0.07% of the population.)
  • If you have insurance and your prescription benefit formulary does not provide coverage for the Auvi-Q, the cost will still be $0 to you.
As with any new program roll-out, there will be a learning curve along the way, but I feel that this new program offers several paths to getting a state-of-the-art device into the hands of those who need it. For those unfamiliar with the Auvi-Q, please check out one of my previous posts to learn more. (Please note that any pricing/availability information on prior posts will be out of date.)
I will update with any news, as I receive it.

Friday, November 18, 2016

Flax is Back!

Bread made with "flax eggs"! Hooray!

January will mark 3 years that we have been in treatment with Dr. Xiu-Min Li. We have been so lucky to see the continued downward trending of her IgE levels. My daughter is no longer on daily antihistamines, she rarely gets sick and when she does, the illness is short-lived, and almost her entire body is eczema-free, aside from the tops of her ankles, which are a bit of an unsolved mystery. (Actually, part of the mystery isn't so mysterious - I am not being very compliant about the eczema creams that Dr. Li has prescribed, so that is definitely a factor.) Aside from that area, we have worked hard to stay at around 99% compliance with capsules, baths and after-bath creams. In the past couple of months, I'd say we might have even slipped into 95% compliance territory, because we have skipped a few baths, here and there. Even so, I feel we have been very good in the compliance department. It has not been easy, though. It's a lot to manage, but worth the effort.

We recently had a couple of big "wins" that I'd like to share. If you'll notice, the "currently avoiding" list on my banner is missing one food - flax! My daughter's flaxseed allergy has been one of the more restrictive items on her list. It's often used in a lot of allergy-friendly products, or on shared equipment with said products. Calling companies about flax cross-contact is tiresome and sometimes fruitless, since they don't always have that kind of information readily available. 

I've written previously about my daughter's reaction to flaxseed when she was a few weeks shy of turning 2. It started quickly, but was protracted and escalated as the night went on. (I actually wrote about it in a few posts, as it was very traumatizing for me - even more so after the fact, when I realized how bad it was without me being fully aware of the situation.) She was undiagnosed, at the time, but later her IgE test came back at 28. She also experienced intermittent rashes from foods with cross-contact with flaxseed.

This mini-chart shows her flax IgE over time: (below the line is after treatment began...) 
Her IgE had already dropped off quite a bit before treatment started, and it continued to drop a little during treatment. I grew confused and frustrated a bit, because I felt like it just didn't make sense. A part of me was terrified of flax, but another part really felt like she was "ready" to tolerate it, to some degree, but her IgE would not go below 2. She had a skin test for it back in May 2015, and the wheal was as big as the histamine control. Dr. Li reminded me that the skin has a longer memory, but the allergist didn't recommend doing a challenge with such a positive skin result. Around that time, her IgE was 2.76. 
All 3 of these were considered "positives"
When we tested in July, it only moved down to 2.20. I had this feeling that it was just "stuck" and wasn't going to go down any further. Dr. Li had previously explained that IgE may never go back to "before they were allergic" or "when they were a newborn" etc., and I thought to myself that maybe this was "as low as it gets" for flax.

Initially, I asked Dr. Li for her opinion on doing a challenge for a "trace" amount of flax. I really didn't care about eating flax straight. I just wanted all those many allergy-friendly products that are in cross-contact with flax. She said we could talk to our allergist about doing a challenge with a small amount of flax. I recently switched allergists and when she looked over my daughter's history, she felt that even with the reaction from when she was 2, she had a good chance of passing a full challenge. We split the difference, and decided to go with what came out to about a 1/2 serving. This was in the form of me using a "flax egg" (3 T. ground flaxseed meal) in a dozen muffins.

It's hard to describe, but I had these simultaneous feelings that she was ready to try flax, again, yet utterly terrified to the point of feeling ill. I felt like part of me knew that everything would be OK, but the other part was so scared. Anxiety isn't a very logical friend.

We arrived at the appointment and the nurse said they were going to do a skin test and I got nervous. The last skin test wasn't so great, but this time it was being done with a muffin that contained flax and not straight flaxseed. Her histamine result was HUGE! Even her saline control had a tiny wheal. On the other arm that was poked with the flax muffin, there was barely a blip. Phew!

The process took quite a while, with larger and larger pieces being eaten over the course of about 2 1/2 hours. I watched her like a hawk. My insides flip-flopped a thousand times, but she was fine. *I* actually sprouted a small hive on my cheek. Oh, the irony!

She drew a picture of her "Minecraft alter ego" looking at a muffin, saying, "Yum!" They declared it a success!

We planned to continue at this amount and then gradually move up to a full serving. The purpose is not to desensitize, but to slowly reintroduce the food to the body, since it hasn't "seen" it in about 6 years. We just want to continue "low and slow" and give her body a gradual reintroduction to her long lost flax. I think both doctors feel she would likely pass a full challenge, but I'm good with taking it nice and slow. 

I've relied heavily on IgE for clues, in the past, and still look at the values, since it's all I have to look at, but more and more I realize that IgE just doesn't convey the entire immunological picture of what's happening at the cellular level. I'm hoping this is a sign that all this time in treatment has produced changes in other biomarkers that IgE isn't displaying.

The second "win" is that we also introduced sunflower seeds into her diet without incident! She doesn't have a reaction history for it, but it was one of those marked "positive, so avoid it" and it finally went down to <0.10. Her skin test from 5/2015 also didn't come out negative, but she ate them just fine. I did toast them, so that might have helped, some, too. We also had another year of treatment under our belts. 

Even though these aren't common, "major" allergens, they are a huge deal for us and we are so happy to have made this progress.  I am still just amazed that she is able to eat anything with flax in it. I was just hoping not to worry about cross-contact. It's hard to really feel like I can "trust" any food, completely, but we move forward with cautious optimism!

Wednesday, October 26, 2016

Auvi-Q Epinephrine Auto-injector to Return in Early 2017!

Exciting news is making the rounds! Auvi-Q is slated to make its much-awaited return in early 2017!

I have loved this device ever since I first heard about it. I love the size, I love that it talks you through the process, and I also love that it was invented by twins Eric and Evan Edwards, who are both at-risk for anaphylaxis.

Given that this device was recalled from the market, we all want assurances that any problems have been solved. Rights to the device have been returned by Sanofi to kaléo (formerly Intelliject). Eric Edwards explained, "We have created an intelligent, high tech, 100 percent automated robotic production line with over 100 quality checks on each and every Auvi-Q device to help insure that streamlined and consistent production process."

Pricing has not been set, as of yet, and is definitely a top concern, especially in light of recent events. The makers of Auvi-Q are well aware of the need to provide affordable access to patients.

To keep up with the latest on Auvi-Q's return, you can visit and fill out their form to sign up for updates.