Writing Local Congressmen

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Cross-stitch gal

Cross-stitch gal

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For those of us in the U.S. I am looking to write my local congressmen/women here in Washington about Crohn's & Colitis. I have lots of facts about our diseases to put into it, but am looking for ideas as to what we're actually looking to have done for us. These ideas need to be realistic as to possibly having easier access to bathrooms like our brothers and sisters are trying to get in the UK. Or, more money to help us with research, medicine and such. Would love your input on this.

Also, once we've got this going and put together would you be willing to join me in writing your local congress as well? Maybe if we can do this together we might be able to get something done here as well.

Thanks :) :us_flag:
Lisa
 
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I suggest you try to approach people about what challenges they face on a regular basis. Access to bathrooms could be one, another could be employer acceptance of the disease or there could be insurance issues with some of the medicine to include remicade and/or humira.

Providing information about the specific issues and maybe examples of each issue would go a long ways towards furthering your cause.
 
Thanks for your input SdN:) That's some good info! What I'm planning to do is copy each suggestion and save it. When we get enough then I'll print it off and compare them as to what there's more of. Am hoping to put in a general letter at the end for you all to see as to what I'm sending...
 
Well, I think writing to our local government officials can be helpful in getting points across. In the past I used to do so on political topics, and when sending well written letters, would often times receive informative replies in return. I never felt I made any headway! but from a personal stand point it felt good to make a point.

I think in todays America or Europe for that matter, it would be tough to get additional funding for more research. With governments broke, cost cutting is being looked into out of necessity. For example, I recall on this sight that the President's last budget proposal looked to cut IBD funding.

http://www.crohnsforum.com/showthread.php?t=33876&highlight=obama

In light of this, something that we could do is conduct our own informal testing. It wouldn't be difficult to do. We could ask our scientific advisor here on the Crohnsforum.com sight to create a testing protocol for different ideas to try - drugs, supplements, diets, etc. From that IBD volunteers could be asked to sign up for different ideas, giving them a try for a period of time. Then data collected could be posted showing what worked and what did not.

Just an idea. I've seen this done on another medical sight and it seemed to workout well.
 
One of the biggest and most common issues I see on the forum are people who cannot work a full normal day. Many are practically confined to the bathroom and worry about whether or not they will get hired or fired. Many want to work not only for income but for health insurance as well to pay for doctor visits, tests, medication etc. If you don't have insurance, you get sicker and sicker and risk the possibility of further complications, surgery and even death.

What do I want? Free health care and unlimited bathroom breaks in the workforce where it doesn't affect your pay. When do I want it? NOW!
 
Well...I'm not sure about free health care. Even though, it sure would be nice Crabby:) But, we probably could do something about the bathroom breaks at work...
 
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Alright, so here's what we have so far. Please let me know if I'm missing anything or of any other ideas: :sign0085:

- Easier access to bathrooms
- Protection from discrimination in the workplace because of increased bathroom breaks.
- Insurance support with medications including remicade & humira
 
I have a few ideas but it is 4:10am here,

one issue that is near and dear to my heart is the Implementation of the Compassionate care act here in NJ, commonly known as the medical marijuana law.
the govenor signed it into law years ago but now the new govenor is dragging his feet about implementing it..

also, we neet to get the Drug pannel screen test changed in the pro medical marijuana states so THC/Marijuana is not counted against a legaly registered Patient.

Some of us can not work a full 8 hour shift, some of us can not even work at all,
we need more public awareness and education of just how debilitating Having chron's is, moreso if someone has Depression and ADHD along with the Chron's and Anemia.

will write more later.
 
Well...I'm not quite sure about the medical marijuana thing. But, I do have an idea of what we could ask for with the meds. See what you think:

We could ask them to take the main medications that are used for crohn's & colitis and make them all generic. It would make things less expensive for medicaid, medicare and other insurances. Plus, in the longrun it'd make it less expensive for us too.

On top of that, it probably wouldn't cost a whole lot to do either.
 
There was a time when Zantac, Nexium, and I think Prylosec were only available through prescription so they have made progress in that area.

certain meds will need to remain supervised, like the prednizone of course ..
 
Ok Boys:) So, I take it you kinda like the generic brand of the medication idea. Do we want to do that? Or, would we rather have easier access to bathrooms? If we had easier access to bathrooms, we'd be more likely to spend money at the places we happened to be at at the time...
 
well I think having access to medication is just as important as accesss to the bathroom.

I dont mind using generic vs name brand iin some cases.

Some places have bathrooms right close to where a person may be working but they are not allowed to use it because it is for the customers and have to walk to the other side of the place, it is a real drag.
 
I agree. I'm thinking that at this point in time though, I think I'd rather head for the generic meds because the brand name ones are so expensive. Especially since, I can see people not being able to afford their meds...
 
Alright, sounds fair. So, are we settled? I wouldn't actually get to the actual writing and such till my weekend, say tue,wed or thur. Been talking with my husband back and forth on this all along. So, will have his support in this as well. Thank goodness for husbands:) Gotta run though. Have a good rest of the day! Starting work at 5pm and have a few things to do yet. Let me know if I'm missing anything. Lisa
 
ok,

I will gather up supporting links from credible medical sites which specify how chron's disease debilitates the patient and limitations etc...

and any legal cases that can be used to establish precedent, etc...
 
I will definately look into it.

something I thought of, based on what my therapist told me that I am using as a basis for the psyhchological aspect of my dissability claim.

Chron's Disease can be very debilitating especially when combined with Depression and ADHD. Patients with this condition often have trouble working a full time job and usually will have many jobs. Patients find it difficult to get out of bed due to lack of energy and fatigue and often call out of work, or are late to work, need frequent bathroom breaks as well as haveing problems focusing and have problems getting along with co-workers.

With the onset of symptoms such as inflamation, diareah, constipation, etc.. patients experience general weakness and experience difficulty doing simple tasks which require standing, kneeling, squating, bending, reaching, etc and often have difficulty lifting anything over 10 or 15lbs,

there is more but that is what I have so far.
 
This is great, guys! I will start looking into some things for this. Also, I think it would be useful if there were better data on the number of people with Crohn's by state - I was searching for some state-by-state stats and couldn't find any. That way, people can contact their representatives, etc, and say "look, there are X number of people in this state with this issue - what can we do to make their lives easier?"

Will start keeping track of a few ideas to write in with!
 
CrohnsCHES,
Do you think you might be able to find some statistics like that for IBD? That'd be really cool if you had any idea where to research that! Please let me know whatever you find:)
 
Earlier in the thread I mentioned the idea of informal testing through the forum. The thought being that volunteers could test different topics ranging from diets, supplements, even drugs and report how well they helped or did not help.

Along similar lines, ran across a couple example articles recently on conducting self testing. Thought to share.

"Jimmy Moore’s n=1 Experiments: Nutritional Ketosis Day 1-30"

http://livinlavidalowcarb.com/blog/jimmy-moores-n1-experiments-nutritional-ketosis-day-1-30/14409

&

"How to Conduct a Personal Experiment: Biphasic Sleeping"

http://www.marksdailyapple.com/how-to-conduct-a-personal-experiment-biphasic-sleeping/#axzz1xtfIxLJK
 
That seems to be the way it goes - I haven't found a single place where you can find all the stats together. With a bit of searching, a few states have their own stats (like what you found) but it's hard to track them down, even for IBD...
 
Saw there was an article with a bit more information on the OTC drug proposal from the FDA. Mentioned are some of the drugs that would be available & if it happens how the system would work with pharmacists being involved, along with drug firms submitting applications for the program.

"FDA proposal gives pharmacists too much power, doctors argue"

http://www.foxnews.com/health/2012/...ves-pharmacists-too-much-power-doctors-argue/
 
I don't know how you could do anything about getting the meds generic. The drug companies hold a patent and can set the price at whatever they want. Until that patent expires (20 years in the US starting before clinical trials) there can be no generics. I don't think the FDA can do anything about that.
 
I do like the idea of bathroom accessability. Very few states have a law requiring businesses to make their bathrooms available to anyone. May not seem like big deal to some people but it made me nervous about shopping when I was in Florida.
 
This right here. http://www.crohnsforum.com/showthread.php?t=37226

I feel it might be another golden egg like LDN. However it's not approved for crohns for some reason (????). But it approved for lots of other autoimmune diseases, and minor things like fatigue syndrome. Puts severe cases in remission in 4 weeks 77% of people responded in the trial this way. On par or better than remicades first stats on their first trial. No profit to be made because it can't be patented
 
What I don't understand is it is available on the market, and is used to treat Autoimune Diseases, ok, so Chron's is an Autoimmune Disease, I just dont get it...
 
Well...could try to make the bathroom thing federal rather than by state. Especially since there's only 3 states with this law right now. For us then, we'd need a doctor's note or an "I can't wait pass" from CCFA like Mike McCready from Pearl Jam did.

I already did some research and in order to get one of those passes from CCFA you need to become a member. Least expensive membership is $30 a year. But, if it became federal and you do some traveling by state it might be worth it...
 
why should we have to join the CCFA and pay out of pocket just to get employers to do what they should already be doing.

THere are laws which mandate employers provide accomidations for the handicapped and disabled, and Crohn's Disease is debilitating.

I am going to guess that the statistical data on the number of people who have Crohn's disease is lower than the actual number only because some patients opt for privacy measures and the hippa laws are much stricter in some states
 
i know, lol I wasn't meaning to snap at you, I just am not familiar with who those people are, (CCFA) and what would it benefit me to affiliate with them, is it worth it? $30 per year or per month?
 
Well...I also mentioned being able to have a doctor's note. Looks like my state already has this benefit. So, if I asked my representative for other states it'd actually be helping you guys more than it would me. Haven't done anything yet, so there's still time. But, eventually it's gotta happen soon to make things worth it. I won't do the $30a year myself unless it were made federal. Because, unless it's for other states as well as my own isn't really worth it to me either.
 
I know I am commenting late in the game but you do know that if you live in the U.S.A, you can download a 'bathroom pass' that states you have IBD & can't physically hold it. Of course, an employee working at where you wish to use the bathroom(gas station, boutique, store etc.) could turn you down still. I've never had that happen to me. If you whip out the card(which looks pretty legit) the employee working there will usually give you access to a bathroom(like an employee bathroom) if other public restrooms aren't available.

@Skippy: I am VERY involved with the CCFA & 90% of their events are FREE!

Great idea on writing to the congressman by the way! I wish you luck!
http://myibd.org/RestroomMedAlert/index.php
 

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