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.
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