Great Legislative News!

About 8:30 this evening [4/4/08] the Maryland General Assembly’s House of Delegates unanimously passed House Bill 578 – a bill requiring insurance companies to provide coverage for Amino Acid-Based Elemental Formulas. Once the Governor’s places his signature on the bill it will become law. I have been told the Governor may want to have a “signing ceremony” which is where the Governor officially signs the bill with invited guests present. The Governor has until Tuesday May 27^th to sign the bill. However, I do not believe he will wait that long. If there is a signing ceremony I will send around an email to the Maryland families (and those in VA/DC who are insured in MD) so that they can attend. I always add this disclaimer - In politics nothing is ever final until “its final” – but I can say with very little doubt - and barring any completely unforeseen circumstances – House Bill 578 will become law.

I believe the full text of the bill will be on the internet tomorrow [4/5/08]. Once it’s posted, to view the final language please go here: http://mlis.state.md.us/2008rs/billfile/HB0578.htm Then, scroll to the bottom of the page and click on the word “Enrolled”

Children’s Magic

Jason S Eberstein
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Washington, DC 20036

www.childrensmagic.org

A few more words on the news bit

From what I just wrote in answer to someone's post on L&V:
Yeah, believe me--no child is drinking EleCare or Neocate because he wants to. The stuff tastes terrible. In fact it tastes so bad that many patients who need to switch to the formula in adolescence or adulthood REQUEST a feeding tube because they can't make themselves drink enough of it (a lot of the kids who are diagnosed in infancy already have a gtube because they don't drink enough to survive without pump feedings). And we're not talking about a supplement, or a choice here; due to this disease this is all our kids can have.
They actually chose a really good sample family for news coverage--parents working as a nurse and police officer, who do have insurance but the insurance won't cover the formula. This is the typical face of the families with this problem--we work, we don't qualify for WIC (which would only cover the formula until the child is 3 even if we did qualify), we don't qualify for any of the state insurance programs for the UNinsured or low-income families, in many states we don't qualify for medicaide waivers (we don't here in MD because they've created a catch 22: you can't qualify if your child doesn't require 24-hour a day nursing to not require living in a hospital setting, but since no one automatically qualifies for the waiver, parents have to train themselves to provide their children's care without nursing, thus the only way to get on the waiver is to either have your child institutionalized for care or to already have some insurance-covered home nursing that you're in danger of losing).

The news coverage

Being pushy, I did manage to quickly make up a bunch of flyers and pass them around at the kids' school yesterday about the ABC coverage. The story was actually pretty decent, though it didn't go far enough about the differences between a child spending a life depending on this formula versus a baby who tolerates Alimentum or the like better than regular milk/soy formula; there's a big difference between a family having to spend $150/month for 6 months and having to spend $1500+/month every month of every year of someone's life. They didn't make it quite clear that our children's lives depend on this formula.

And the ironic thing was showing Dr. Furuta, who's always been a proponent of steroids over formula diet, with a gtube/formula patient, advocating for formula coverage. If Glenn Furuta is saying we need formula access, WE NEED FORMULA ACCESS!

But all in all I was happy there were no glaring mistakes and positive somewhat complete coverage of the situation.

ABC Coverage tonight of formula issue

http://abcnews.go.com/Health/story?id=4111934&page=1

At 6:30 tonight (EST), ABC news is to cover the case of a family with two children with EE and no formula coverage. Please let everyone know that this is not isolated--it is a very common problem, even among the supposedly insured.

I don't hold out hope that the news story will be any good, but any publicity for the formula coverage issue is an important step.

To feed or not to feed

I've been talking to the doctors about trying Sachy on Vital Jr formula as a trial....and I keep thinking maybe we should just let him try a whole bunch of new foods. I just don't know. He's had good scopes for years now and no reactions for at least a year or two. I don't want to hold him back from eating for no reason; maybe his gut could tolerate a lot more now than a few years ago.

OTOH, I don't want to make him sick. I really especially don't want to hold out the hope to him that he would be able to eat a lot of things and then disappoint him and make him come back to formula only. Right now he's so accepting of it, I wouldn't want to mess that up.

The doctors' opinion seems to be, "Do whatever seems right. We don't know what to do."

I hate having to be the grown-up. Someone else make some decisions for a while.