Main » February 2005
February 24, 2005
Preparing To Be An Advocate, or Why Target Is Sometimes Good For the Soul
In preparation for my trip to DC, I spent a little over an hour yesterday at Target. Not just any Target but a Target Greatland, which is better than the regular Target but not quite the Super Target. I made the executive decision that I needed the requisite travel sizes of toothpaste, lotion, facial scrub and the like.
C’mon, I need travel sizes. I have RA, for heaven’s sake and I can’t be asked to lug regular size toothpaste, lotion, facial scrub and other assorted amenities around airports and hotel lobbies.
Despite the fact that my luggage is on wheels.
Despite the fact that I could probably get a bellhop to help out.
I’ve been achy and swelling all week, and honestly, Target was a good, bona fide reason to get out of the house (at least in my mind it was). Besides the fact that I haven’t finished the chapter in my yet-to-be finished novel that I said I would finish, come hell or high water, before I left. Fact is, other than this blog and a few emails. I haven’t really written all week, which is really odd for me. I’ve got loads of excuses – swollen knee, headache, general ache, fatigue, stress. Pick one or pick them all, they are still all excuses.
It’s the linoleum-floored, fluorescent lighted expanse of Target that seems like the answer to my combined RA symptom/ mind over matter lackadaisical quandary.
First, I hit the “Hot Spot” a little section where you first walk in filled with specials that cost roughly $.99 each. Then to the isle between health and beauty with all the sample sizes. A miniature bottle of Scope (you have to have minty fresh breath to advocate, right?) and a small tube of Colgate Total Plus Whitening (for that 5000 watt smile to flash at senators/congress people/staffers). Then a tiny tube of facial scrub (with all the inherent pleasures of microbeads!) Mini shampoo and conditioner, mini hairspray, mini bottle of extra strength Tylenol – Oh my! A little first aide kit (be prepared!) and cute little aqua (my favorite color) case to pack it all in. I’m in heaven, and who knew heaven was inside Target?
It seems like much ado about nothing. And maybe it is. But for me, it got me out, got me going, got me thinking like Mary Tyler Moore – I’m going to make it after all!
Now, if I just make my flight on time and advocate with the voracity of shopping for traveling supplies!
And Emmie the Beagle? She got a bag of treats shaped like mini t-bone steaks. Sometimes it is good to be a beagle!
Posted by renee at 4:47 PM | Comments (2) | TrackBack
February 22, 2005
Ms. Nicholson Goes To Washington
Ever see the cinematic classic, Mr. Smith Goes To Washington? It’s well worth a watch, especially if you’re into old movies.
Starring Jimmy Stewart and Jean Arthur, directed by Frank Capra, the 1939 flick shows Stewart as a naive man appointed to fill a vacancy in the US Senate.
I’m a naive arthritis patient, getting ready to go to Washington to advocate. I leave on Sunday and I’m feeling rather Mr. Smith-ish.
After the visits to the state representatives, I think I’ve got a bit more of an idea of what’s in store (staffers! Smiling staffers!). But I’m still wet behind the ears when it comes to advocacy. I’m learning each time I get engaged with advocacy projects and I’m finding just how little folks really know about arthritis - Folks who make decisions on policy or work for the policy-makers.
Nationally, the Arthritis Foundation supports several advocacy priorities, which you can read about on their site: http://www.arthritis.org/advocacy/priorities/default.asp.
I’d like to think that my visits will impact the lawmakers who represent me. I’d like to think that the personal narrative is important to these decision makers. In truth, I may not meet with any legislators, with anyone who will remember anything about me past the few minutes of Q & A that might occur.
So why, like Mr. Smith, am I going to Washington?
Rheumatoid arthritis affects 1 in every 100 Americans. It is three times more common in women than in men.
RA shortens the life span by three to ten years.
Up to 85% of people with rheumatoid arthritis are unable to work by the 11th year following disease onset. Nearly 30% of these patients become disabled within the first three years after onset.
The direct medical costs of rheumatoid arthritis approach $5 billion (that's billion with a "b"!)annually, with nearly 70% of these costs attributable to hospitalizations and home nursing care.
Rheumatoid arthritis patients make more than 9 million physician visits and account for over 250,000 hospitalizations annually.
Lost productivity costs due to rheumatoid arthritis approach $20 billion annually, and rheumatoid arthritis patients lose, on average, 50% of potential earnings – think of the lost taxes, social security, etc.
So, if I don’t go to Washington to at least try to get the message out, who will? And who better than me, someone whose life is affected?
I’m planning on taking a journal and keeping a diary of my advocacy experience. Stay tuned for updates…
Posted by renee at 10:28 AM | Comments (3) | TrackBack
February 16, 2005
Notes From A First Time Arthritis Advocate
When my friend Joanna asked me to join the Advocacy Committee for the Central Ohio Arthritis Foundation, I really didn’t know what I was getting myself into. I’d not really been an advocate before. In fact, I really had very little experience in politics or government before.
Joanna chairs the committee and she and I will be going to Washington D.C. Feb. 27-Mar 1, 2005 as part of a national advocacy effort. But today I did my first real advocating, here at the state level. I really didn’t know what to expect.
I met up with Nick from the Arthritis Foundation and several other advocates: Andrea, a fifteen year old girl with Juvenile Rheumatoid Arthritis, her mother, and Oralia, another RA patient like myself. The five of us had appointments with three different state representatives.
Well, let me restate that. We had appointments with their offices; we met with none of the representatives themselves, but their aides or staff people. We met with these folks during the afternoon today during scheduled visits as part of Ohio Health Advocacy Network. Earlier, other RA patients and advocates met with other offices and one group actually met with a representative. Although maybe they would have been better off meeting with the aides – the representative actually aid to them, “Well you could be worse off.”
Hey buddy, let me tell you we HAVE been worse off and are here to tell you exactly what being worse off is. Being worse off is like Oralia, diagnosed two years ago. She was so weak her daughters had to hold her like a baby to get her out of bed. Or Andrea, who had to have injections into her elbows so that the joints didn’t totally disintegrate. What dreams have been shattered for him?
Luckily I didn't meet with that particular politician. I would have been happy to take a hammer to one of his joints so he could feel first hand what it was like to wake up one morning with the kind of joint pain that we’ve all felt from RA. But, he wasn’t on my list and I’m sure security would have let me in the building with a hammer.
The first meeting I went on was with the representative from my district, number 24, Geoffrey C. Smith. Of course we didn’t meet with him. His staff person was courteous and asked thoughtful questions. He told us that he didn’t know much about arthritis, which we filled him in on. Not knowing to expect a staff person, I felt slighted that Mr. Smith didn’t see us himself – being that TWO of us were constituents from his district (I can name three others with RA in district 24 without even thinking about it). On the Ohio House website, his affiliations are listed and include the National Conference of Insurance Legislators – Health Committee Chairman.
Hey Mr. Health Committee Chairman! I’ve got a HEALTH issue, I live in your district and you blew me off.
Here’s the thing – I’m not the face you think of when you think of Arthritis – neither is Andrea or Oralia. Andrea is fifteen and an adorable-looking high school sophomore. I’m a 32 year old former ballet dancer. Oralia is a mother who used to play three hours of tennis a day. So if he thought that only old people had arthritis issues, he’d be wrong. If he thought it wouldn’t be a good photo-op, he’d also be wrong.
Considering his insurance/health affiliation, he should have met with us. We consider arthritis to be a non-partisan issue and one that has very important economic ramifications. Many arthritis patients want to work and be productive (politician speak – work and pay taxes, social security, etc.) and need support of programs that help us get the therapies and work environments that we need. Arthritis is the NUMBER ONE cause of disability in both Ohio and the US. THREE MILLION of us in Ohio have a form of arthritis. While we weren’t there today to push any particular piece of legislation, it would be important to listen to us? Why? Some very simple reasons.
One, is to know what is going on with constituents and their health. If all THREE MILLION of us with some form of arthritis were unable to work and went on welfare, it would be a huge strain on the economy. Furthermore, most of the issues we have are with getting the right medications and occupational help that keep us employed and paying taxes, rather than draining them. Through different agencies, many of the occupational needs of people with arthritis can be provided without any cost to the employer. Additionally, the three of us who came to talk with the representatives were all on a therapy called Enbrel. Enbrel is a therapy called a biologic and helps to combat the effect of RA by being injected subcutaneously, or under the skin. Synthetic proteins in Enbrel attach to receptors called TNF in white blood cells, which causes them not to attack healthy joint tissue. Enbrel doesn’t work for all RA patients, but it worked for all three of us who met with the staffers today.
Enbrel is not covered by Medicaid. 10% of Ohioans with RA rely on Medicaid to cover their arthritis treatment. In this case bureaucrats, instead of doctors, are making critical therapy decisions.
I noticed that Representative Smith had a degree in Political Science from The Ohio State University. No mention of any medical background. Curious that he should have more say with what a patient might receive as a therapy for arthritis than that patient’s doctor.
Furthermore, many insurance companies require that you try other (insurance speak – less expensive) therapies than Enbrel, which costs over $1200 per month.
Maybe I’ve been a little tough on my representative, but I have to say I did feel slighted by the fact that he didn’t meet with us. I know he's busy, but we're busy too. Considering today's events,I’m thinking when I go to Washington at the end of the month that I won’t get to meet with Congresswoman Deborah Pryce or Senator Voinovich, but some well intentioned staff people.
I noticed that Congresswoman Pryce is part of the House Cancer Caucus. Perhaps she would open her eyes to the less publicized but widespread issues of arthritis too.
On her site, she (or her staff) writes:
Dear Colleagues:
The House Cancer Caucus will work to educate our colleagues about the many issues surrounding cancer. We will work through Congress and, hopefully, with the Bush Administration to advance federal policies that further cancer research; improve prevention, diagnosis, and treatment; and enhance the quality of life of cancer patients.
Perhaps these initiatives could apply to those us with arthritis, too?
I was happy to see that there was a link to the new Medicare prescription drug bill, which was signed into law on December 8, 2003. While this legislation makes it possible for seniors to get therapies like Enbrel to patients on Medicare, it does not address the needs of those of us who do not qualify for coverage under Medicare. But it’s a good start. Maybe meeting Joanna and I would help our representative to see that arthritis is not just a disease that affects elderly citizens.
Senator Voinovich’s website also touts the Medicare legislation, which is a good place to start. His other initiatives are largely non-health related.
Today’s visits were a good starting point. Nancy, the aide to State Representative Mitchell, was very aware of arthritis issues. She suffers from osteoarthritis and was able to relate her experiences. She listened intently to our stories and offered suggestions on how to get the word out. She was enthusiastic about our visit. She was our last appointment of the day, so we left on a high note.
For someone who has not really looked at my condition from a political perspective, today was an eye opener. I don’t think most people have any understanding of who has arthritis and what we go through. The thoughtless representative who said we could have it worse may be an extreme example, but I think about how political people cajole us, feed us information on the topics they want us to think of as important to them. But what about us? Could I have it worse. Definitely. But before I get that reaction from someone, I want them to consider my story – consider me. And maybe that is all any of us who live with a condition really want.
Posted by renee at 3:34 PM | Comments (0) | TrackBack
