Help save IC funding; contact your senators!

[greenredhead]

I received this e-mail from the Interstitial Cystitis Association (ICA) asking people to contact their senators in regards to IC funding that may be in jeopardy. I contacted mine!

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We need your help to protect critical federal programs benefiting the IC community.

Continued funding is in serious jeopardy. This Wednesday (July 22nd) the U.S. Senate marks up its fiscal year 2011 spending bill. This bill funds NIH research studies and the CDC IC Education and Awareness Program.

We urge you to contact your senators—encourage them to support reinstating the IC Education and Awareness Program at the CDC and funding for NIH IC research.

Please send this message to your senators:
Find your senators by going to www.Congress.org and entering your zip code

Dear Senator____________:
As a constituent and person affected by interstitial cystitis (IC), I urge you to restore federal funding for a critical IC program in the FY11 Labor-HHS-Education Appropriations Bill. IC is a serious and chronic health problem. Patients are in great pain and discomfort, urinary urgency and frequency are severe. Symptoms can dramatically affect an IC patient's quality of life, leading to a loss of mobility, a loss of relationships and a sense of isolation, as well as the inability to continue to work. Diagnosis is made only after excluding other urinary/bladder conditions, which causes one or more years delay between onset of symptoms and treatment. When healthcare providers are not properly educated about IC, patients may suffer for years before receiving an accurate diagnosis and appropriate treatment.

For the past 5 years, Congress has provided funding to the Centers for Disease Control and Prevention (CDC) to promote IC education and awareness. The CDC program supports much-needed healthcare provider and patient education, as well as information sharing between patients, healthcare providers, and researchers. Healthcare provider and patient education is essential to ensure that patients receive accurate and timely diagnosis and treatment. Unfortunately, President Obama’s FY11 budget request recommends the elimination of this program. I urge you to support me and others affected by IC by asking the Labor-HHS-Appropriations Subcommittee to include $660,000 for the CDC’s IC Education and Awareness Program in FY11 L-HHS Appropriations funding bill (level funded from FY10). I urge you to also safeguard NIH IC funding. Your assistance is greatly needed!

Thank you for your consideration of this request. Please advise me of your actions at your earliest convenience.

Sincerely,
Your Name
Your Address

[jvr]

Come on you guys! We really need to make our voices heard. IC funding is in jeopardy for the 2011 year. This funding has been written out of the budget!!!!! Please go to the ICA website are read about it. Please help us preserve the limited funds we receive!!!!! They are recommending that we call and write to let our senators know that IC funding should be a priority....this will be voted on very soon!

Jill

[123456]

I just did it!

[greenredhead]

I got a reply from my senator and in so many words she said this funding isn't a priority. That stinks! :cussing:

[jvr]

Hi Greenredhead,

That does stink.:rant: I still think as many of us as possible should still write our senators. It brings our issues to light and the more of us that demand the funding the better chances we will have. They are supposed to represent the people so imagine if every person with IC or everyone who loves someone with IC wrote. I bet they would take this more seriously getting flooded with many requests. There is much hope for IC, but we need the funding badly to make that happen!

Jill:hi:

[Julie B]

Just a question that I can't seem to get answered. Where would this money go if they approved it? Is it for NIH research? Private research? Awareness? I mean, in the last line they say to protect NIH research also......but is that what the money is for that they are trying to get from CDC?

I am not trying to say this is a bad thing, and I am sure if ICA is sending this out, it has been researched.....but I just read in the news outrageous food bills of the US Senate that we as tax payers have been socked with (when so many Americans are without work and hungry) and I guess I am getting tired of having my tax dollars go into the great void. I just want to know where it is going, that's all.

[jvr]

Hi Julie,

This is what is says on the ICA website, "Continued funding is in serious jeopardy. The U.S. Senate is set to mark up its fiscal year 2011 spending bill. This bill funds NIH research studies and the CDC IC Education and Awareness Program."
It just seems like the money IC gets is not enough as it is, it's upsetting to see any of it disappear. My very young daughter has IC and it breaks my heart to hear of this. I want her future to be bright and full of great things. I sure hope these pharmaceutical companies take more of an interest as time goes on. You'd think they would after the RAND study came out seeing as IC might be more profitable for them than once thought. (as sick as that sounds....) Where else does IC obtain funding from? I wonder how much the NIDDK puts into IC funding?? I hope that's not a dumb question...

Jill:hi:

[Julie B]

This is what they have on the CDC website:

http://www.cdc.gov/nccdphp/dach/ic.htm

That is it..... by my calculations, that is over 3 million dollars for that one page. What else is CDC doing with the money? Have you seen any public service announcements or papers written by CDC?

I bet ICA and ICN would LOVE to get their hands on a tiny portion of that! Or the local support groups who have to scrape by to help patients, money often coming out of the leaders' pockets. The work they do is much more visible. How many webpages is ICN? ICA? 6 million dollars for one page on CDC? UGH..........not so sure, my dear friends...........

Now if the money is going to NIH, that is different, but I am not sure it is. I hope someone can just come back and tell us where the 6 mill has already gone.

Please don't be mad at me for this.........but we really need to use our dollars wisely to help IC patients.

NOW, other ways to raise awareness include writing our local news stations, newspapers, a hospital newsletter, other websites, and donate to your local support groups.

Just keep the buzz going!!!!! XOXOXOX

[jvr]

Hi,

I see some of your points Julie.:) I remeber awhile back ICNJill had mentioned what could be done with a million dollars more in the hands of IC patients. We could fund some of our own studies of interest, etc. I wish we could start our own movement here...

Jill:hi:

[Julie B]

Jill, I am sorry about your daughter, and I truly hope that we get oodles of funding for this, as long as it is spent wisely. I TOTALLY agree with the RAND study....there is NO ignoring this now! NIH has put money into IC research in the past. If you do a search on PubMed you can see the results of that increasing dramatically in thee past 20 years.

And for all I know, CDC does miraculous things with their money. However, I DON'T want my tax dollars to pay for a table full of legislators eating their rib sandwiches and eating chocolate donuts while IC patients faithfully donate their money, trust and tax dollars and sit home wondering if they can even eat a bowl of blueberries.

What if that money was broken down and we found out that only 5% of the tax dollars were actually spent on IC awareness? I would rather donate to ICA directly and help support Jill here (she isn't non-profit, so she can't take "donations") where I know my time and money is going 100% to people who really care.

Trust me, I don't say any of this lightly. I have devoted every day of the last 12 years of my life trying to help IC patients. Lately, my work has been to get the word out to other dietitians that diet modification is part of the first line treatments and they need to get up to speed. Thank God for my (mostly) patient husband who holds down a full time job and gives us our health benefits. If he lost his job, you would see me disappear from the IC universe immediately to help pay the bills.

What is good about this is it gets us all more motivated to get the message out on our own, bit by bit. I actually think the overactive bladder commercials are a blessing in disguise because people are now more willing to say the word "bladder" than before. It reminds me of when we couldn't say breast or colon, and now breast cancer, breast feeding and colon cancer are much more easily discussed.

Sending you and your sweet daughter gentle hugs, Jill. I have sent you a PM also............ :-D

[Julie B]

I just read the CDC page again and it looks like some of the money is going for ICA funding. If that is the case that is much better than a dozen rib sandwiches... ;-)