10 Year Treat-A-Versary

Yes. Treat-a-versary is a made-up word. But that's what I'm celebrating today! I have been on IVIG for over 10 years now. That's a long time.

Let's do a little math, shall we?

I've gotten one treatment about every 4 weeks for the past 10 years. That amounts to about 130 treatments. Each treatment is pooled plasma from between 1,000 to 10,000 donations  That means, conservatively, I have benefitted from over 130,000 plasma donations. Let's say each plasma donor gives weekly... that means I have benefitted from the generosity of around 250 people.

Amazing. People are amazing. Science is amazing. Medicine is amazing.

New Product Coming to Market

I was fortunate enough to be part of an investigational study of a new IVIG drug... and now that drug is coming to market! The results of the study of the drug can be found in the Journal of Allergy and Clinical Immunology.

I really liked the product and may seriously consider switching to it from Gammagard, depending on what Baxter does about ensuring their supply chain. I never want to be without product and I really don't want to have to change products back and forth because companies can't get their acts together. So far, I haven't felt much impact from any Gammagard shortages, but I really don't want to. Perhaps, this new product will be easy to get. I already know I tolerate it well.

It's an exciting day! :-) More competition among producers is a great thing!

Oh Crap. Alzheimers.

Let's start off by saying I do not begrudge other disease groups access to treatment. I don't wish for people to suffer.

Now that's out of the way, I am really frightened by the prospect of Alzheimer's patients receiving IVIG as a treatment. The therapeutic dosage I've seen online is something like twice as much as the PIDD dose every two weeks, instead of monthly. There are already rumors of shortages and talk that we may see the worst plasma situation since 2005. 2005 was scary. People couldn't get treatment. Doctors could not locate product. Not a good thing. This shortage scare is happening now with (I would approximate) 1 million people using the product, all of them rare diseases. This shortage is happening in an economic slump when there have historically been more plasma donations because people are strapped for cash.

Why else does this concern me? Alzheimer's is a "fashionable" disease. It has name recognition, celebrity boosters, etc. Any development with Alzheimer's is huge news around the world. There are also 5.4 million people with Alzheimer's in the United States. Using two-four times as much product. It is worrisome that the Alzheimer's lobby might get legal protections for their use of IVIG, which would trump mine. We have very few advocates, Alzheimer's has many very powerful ones.

My best hope is that they would develop a monoclonal antibody for Alzheimer's that would target the beta ameloid protein, but that is years of very challenging science down the road. 

IVIG is the only treatment for CVID. There is nothing else even in the pipeline to treat me.

THE SKY IS FALLING

Oh wait. No it isn't.

So there's a manufacturer's shortage for many medications in the US right now. This happens sometimes, yadda yadda, not usually an issue. Most of the time there's something else to use. Besides that, there has never been a shortage so dire that I was denied product and I've been on almost a decade.

This is not the case with some people's preferred brand of IVIG, so if there's even a RUMOR of a shortage people totally freak out without taking 2 seconds to think and perform a simple google search.

Supplies of Gammagard, my product of choice, are currently "tight" per my specialty pharmacy. My infusion is in 2 weeks, but yet they will have no problem supplying my product. Ok. Great. Fast forward to today, when people are absolutely flipping out when they found out they might have to use another product. THEN the rumors start to fly. They're selling all our product to Europe, etc.

This is when I get frustrated. You're panicking people who already have anxiety problems potentially and making them think this is some kind of emergency (it's not) so why not take it down a notch and wait until you can get someone on the phone in the morning? Because that wouldn't be as dramatic? Sigh.

Like I said in the group...
-Not all pharmacies are having problems. Mine isn't. I called on Tuesday and everything is fine.
-The IVIG manufacturer in question has supported our community in ways unprecedented with other companies. They've also said NUMEROUS times that PIDD patients are an absolute priority to receive product. Off label uses (which use a great deal of product) would be last on the list.
-Only 3 facilities for the company are authorized to produce product to sell in the EU. 1 of those is in the US. Meanwhile, it doesn't even make sense for them to send product from US to sell in Europe. IVIG is cheaper per gram there.
-These shortages wouldn't happen if there were more healthy plasma donors. Donations fall off during the holidays, so if patients want to ensure a good pool, they should convince people to donate plasma more often.

I wish people would give a little more consideration before flying off into some land of rumor and total bull and would give even more consideration to sharing that stuff with others.

Happy 8th Anniversary

I realized yesterday I've been on IVIG for 8 years.

The math associated works out to over 100 IVIG treatments.

For the sake of argument we'll go with 1000 donors per treatment.

That means I am sitting here typing today because of the generosity of over 100,000 healthy individuals. If you take the higher donors-per-dosage estimates, it could be as many as a million. It's staggering to think that my life is so dependent on so many people and I could not be more grateful for everything they've enabled me to do.

So, happy anniversary, plasma donors! I sincerely couldn't have done it without every single one of you.

New IG Product Seeking FDA License

Baxter, makers of my beloved gammagard, are applying to bring their new SubQ preparation to market. It's called HyQ and you can read the full press release here.

Basically, this product is meant to infuse your entire month's worth of IG replacement subcutaneously. This is a fast-absorbing product using hyaluronidase to make the tissue more receptive to absorbing the product. The lack of good information on the effects of hyaluronidase, especially in this sort of long-term usage, concerns me. I don't know that I would want to switch to this product, especially before we get more in-patient, widespread information. I see the problems people are having with the change from Vivaglobin to Hizentra, and I do not want to be on the vanguard with this product.

I wonder if anyone has actually put thought into the fact that this would amount to not only an experiment on the value of subcutaneous preparations in monthly dosing but also on the long term impacts of putting this kind of tissue-loosening agent into your skin. I would imagine it would reduce some of the scar tissue problems I know patients experience with current preparations, but at what cost? I suppose we'll see if/when the FDA decides on the license.

"What'd you do to your arm?"

A colleague asked me that today after I came in after IVIG.

I could have used it as a teaching moment and probably should have, now that I'm thinking about it.

I could have told her about having a PIDD and what it means and how I essentially got a new donor-provided immune system today. I could have told her how important it is that people donate plasma and how beneficial it is for people to do so regularly. I could have let her know that I don't miss work because I'm flaky or a hypochondriac.

But...

I just told her I had a blood draw. I guess I did, so they could check my IgG levels, but that's not the primary reason for the bandage on my arm.

Oh well, I suppose.

Medicare IVIG Access Act

Just a quick note to encourage you to support the Medicare IVIG Access Act. Basically, this bill would fill the holes in the current IVIG benefit for Medicare recipients. This way, they'll be able to receive treatment in the home setting. The best news? Not only does it offset the costs of the program, it also offers a net savings to the federal government. Win win! Unfortunately, my community is small, so it's hard to get the attention of members of Congress... But with YOUR help, we can. Please take a moment and contact your members about this.

Thanks!

PS - The IDF supports this measure. More info can be found here.