Friday, September 02, 2011

A little bit of Congressional Help, Please

We have been getting scary news (and here)from around the world of TPN over the last few weeks: some of the important ingredients in TPN and the supplies that go with it are in critically short supply, as in there is NONE to be found anywhere. This isn't such a big deal for Ellie right now since she is still on just D10 overnight, but if she should need to go back on TPN, there are key elements that would need to be rationed or omitted from her mixture like calcium, magnesium and other trace elements that typical people get through their complete diets.

The cause of this is uncertain but two primary reasons have been suggested: one, that there aren't enough raw materials available to make the additives and two, that these very important drugs just aren't profitable for the drug companies and they have made a cold business decision to stop making the drugs or have slowed the production down.

If they were making widgets or car parts, this would be one thing, but we are talking about really important things that will have real consequences for thousands of people around the country including typical people who are in the hospital, need antibiotics or chemotherapy.

So what is there to do about this other than worry and hope?

One simple thing that we can all do is let our representatives in Washington know about the issue and the very real consequences of letting this problem continue. There are things that even a gridlocked Congress can do to urge and nudge the FDA and the drug companies to fix this problem but Congress won't act unless they hear from their constituents, who vote and are vocal.

A simple letter to your member of Congress and Senators still has power. Find them here, and write them a simple letter telling them who you are, how you or your child are or will be affected by drug shortages and ask for their help. These people have connections and do solve problems for voters every day. Ask them to help and also ask them to consider sponsoring the bills that have been introduced to increase oversight over this emerging problem. Also, if your Congressman is on this list or or Senator is on this list, they sit on an important committee or subcommittee and could be even more influential in getting answers and solving this mess.

For all of the kids and adults with short bowel and the range of other conditions that require the more than 150 medications that are currently in short supply, we thank you for your help.


GutGirl said...

I have been following your blog for a while now, and can finally comment. I just wanted to let you know this is a great blog, and I really enjoy it. I have a problem in my bowel, too, not short gut, but something painful that we haven't identified, so I kind of fell a kinship to Ellie. Good Luck.

Cathy said...

Thank you for the information. This has affected Annabel She has received the calcim in her TPN a long time and I think recently the magnesium was cut.She should have ethenal locks on the end of her lumen and those were cut back in March due to shortage. Since she almost died after pulling her line with a very bad blood infection her doctor had to write a very direct letter to get her approved again for ethenal. IT is such a crazy world we live in...Again, thank you for this information.

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