Government Research needed | Arthritis Information

 

How as a group can arthritis sufferers get the federal government to do more research on drugs that give us immediate relief? I'll be writing my Senators and Representatives and of course those who are running for President.  Please give me feed back, addresses that will help me contact people who will introduce legislation to help us. Thankshurts-

I completely understand the need for immediate pain relief-I think everyone here can. But the presence of pain serves a very important purpose in letting you know there is a problem that needs to be addressed. I know the waiting period when starting a new drug can be like torture but there are already narcotics like vicodin out there to deal with that. Temporary use of Prednisone during this period is also an option.

I am much more interested in research to treat the disease (check at "RNA research" posted not to long ago) than treating a SYMPTOM of the disease (which, by the way would mask the pain caused by joint damage creating a condition that could go left untreated).

By the way, not everyone has this result but Enbrel helped me immensely 1 hour after my first injection. So there is that potential with the biologics.

Personally if I could know I would definitely feel better in "X" amount of months, I wouldn't mind the wait. It's the emotional roller coaster you go through hoping a new drug will work, waiting one month, another and another and then moving onto something else when it seems to be ineffectual. THAT sucks and I completely agree with you.

There is no doubt all of us want more research for treatment of RA. Unfortunately our numbers don't justify the cost. Drug companies WANT you to be on expensive long term care. I had a friend who worked at Merck and told me just that.

Nonprofits like the Arthritis Foundation are obviously a good starting point. They have a whole advocacy section on their website. The Advocacy Summit is going on today (and yesterday) in Washington DC. Some members on this board are attending to implore our legislators to cosponsor the Arthritis Prevention, Control & Cure Act.

I think your plan to write to all our legislators is a good one. And everyone here should do that. I know I am! Thanks for motivating me!

hessalina

hurts, RA has not been given the attention it needs. Hessalina gave you the best place to start with the Arthritis Foundation. There are also some bills before Congress that are pushing for more awareness and research.

Whenever I find something like that, I try and post it over at rasushi because they have a place to post it. I usually post it here as well, but it soon gets buried.

First, you can always write your own state and federal leaders. Then, there are surveys out there looking for personal stories. We need the advocacy because it gives us a sense of power over this illness. You write and search and then please post what you learn so that others can participate.

Thank you, I know just the people to write to. I'll keep you posted but how can we keep this to the front of the board list?I personally do not think that the Arthritis Foundation does it's job as well as it could.  Like all foundations, there are too many people collecting huge salaries and not enough of the donations are going for research. It's a shame, but that is the way it is.   How about the insurance companies? Surely they'd like to see a cure!Oh the sarcasm just drips from that line gimpy. LOL

I agree with now&then, I've never really been impressed with the arthritis foundation......that's really sad. :(

We should start our OWN foundation!!
But I'm serious. Why would an insurance company want to keep paying for
our enbrel nand remicade and other super expensive drugs if they didn't
have to? Other than the patients, they're the only ones with a vested interest
in eradicating this and other diseases. To everyone else, including our
doctors and other advocates, there is a vested interest in having this disease
around. It's what they make their living from!

I wonder if our doctors would have a clue about what to do?

 

We need some high profile celebrity advocates to really bring this to the forefront. Like Michael J Fox does for Parkinson's and Christopher Reeve did for spinal cord injuries.

As far as I know the only two celebs are Kathleen Turner and Tina from Survivor.

The problem is an old one. You can look at these people and never see the pain they are suffering. Not obvious like Fox or Reeve. Or the public is even more uneducated and thinks RA is like OA. RA is just not a "sexy" disease.

Perhaps another idea is to contact teaching hospitals and medical schools.



That woman that plays Janice on the Sopranos has RA.  Well that would be a good person to start with.....

I do wish there was someone really big though....like Sean Connery. LoL
Well, statistically speaking, since 1% of the population has a rheumatic disease, probably a lot of celebrities have RA, but they're just not saying. I would venture a guess that if you hire an actor with RA it would be harder or impossible to get production insurance, plus there would be other problems, so actors would keep their health status a secret. Not only that, but famous actors have access to famous doctors and probably some of them have actually been cured or don't see their arthritis as a problem. Also, just because someone has a condition does not mean they would be willing to become a spokesperson for that condition. Katharine Hepburn never became a spokesperson for parkinson's.
Gimpy-a-gogo39141.6183101852Very very very true. And sucky. But true. *sigh*

Ok this is exactly what we have been doing in DC this past week.  There are a few bills that have gone through congress and one that is being introduced to the House on friday.  Write a letter to your congressmen/women and also your representive from your district to support the following bills.

The Arthritis Prevention, Control and Cure Act

Investing in CDC Public Health and Prevention Strategies saves lives and money tomorrow... This one, the Arthritis Foundation is urging Congress to provide the CDC with an additional million to fund a new osteoarthritis prevention initiave and to preserve .4 million for the CDC's arthritis program in the Fiscal Year 08

Support 6.7% increase in NIH reasearch funding.

I will be posting a seperate post that has all stats i also have some info for each particular state if you want that info PM me.

 

www.Congress.org is a good website for communicating with elected legislators.

They have sample letters and a link to have your letter hand delivered.
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