Time to Advocate!

Today (Feb 27) and tomorrow (Feb 28), hundreds of people with arthritis will be visiting Capitol Hill to urge their Senators and Representatives to become cosponsors of the Arthritis Prevention Control and Cure Act. These advocates are serious. They open up to their members of Congress, sharing their personal stories of what life is like with arthritis and how Congress members can help improve the situation for the millions of other people who have some form of the disease.

Two years ago, I was one of the advocates who climbed the steps and walked the halls to share information and stories of people with arthritis with elected officials in the Senate and House of Representatives. Some of the stories I shared came from the stories that readers of Arthritis Today told me. The impact was strong, and many members of the last Congress signed on as cosponsors, meaning they would help form the two-thirds majority needed to get the Bill containing the Act through the process of becoming passed. Unfortunately, the number of cosponsors in the last Congress didn't quite reach the two-thirds majority, so with the new Congress in place, we must start again. Yesterday the Virtual Summit began. If you want to urge your Senators and Representatives to cosponsor the Act, so that funding for arthritis research and medical care for those with various forms of arthritis can increase, click on the link to the Arthritis Foundation to the right of this box, and when you get there, click on the Advocacy tab.

This year, I sent my story to my congressional representatives via the Virtual Summit. Why? Because it's a bit different than the one I had two years ago. I hope my story gets through to my elected officials. I've pasted it here to share it with you, too:


Two years ago, I visited several Senators and Representatives on Capitol Hill to share stories of people living and trying to survive with the chronic disease rheumatoid arthritis. This year, I am one of them, having been diagnosed with rheumatoid arthritis a few months ago. Two years ago, I visited your office, Dr. Price, to inform your staff about the seriousness of arthritis with hopes that you would support the Act. I am extremely disappointed that you have not yet done so. And that same year I interviewed you, Senator Isakson, to share your reasons for supporting the Act (thank you) with the readers of Arthritis Today magazine. I believe you were presented with a plaque containing the article that may be hanging in your office right now. Back then, I was advocating for people with arthritis for two reasons. The first reason was personal – my grandmother died of rheumatoid arthritis when I was 18 months old and I've seen my daughter unable to walk when she was four years old due to arthritis triggered by a virus. The second reason was professional. I am the medical editor of Arthritis Today magazine, which is published by the Arthritis Foundation. Every day of my life I talk to or read about people who struggle to pay for their highly effective but highly expensive treatments so they can stay productive in their jobs and continue to be active members of society. And every day I talk to or read about people who cannot afford to do so, and therefore have (or feel they will) become a burden on society by being one of the disabled. I hear about the pain they must bear with every move they make, and I see how they try to adapt and modify tasks so they can continue to use their gnarled hands and fingers.

But now, I live with the pain, too. I still work full time, I am able to care for my three children, I am successfully pregnant with my fourth child and I know to take good care of myself to help reduce or stall future disability. But rheumatoid arthritis is unpredictable and can be extremely aggressive. Who's to say in 10 years I won't have damaged joints that reduce my ability to work or care for my kids? Who's to say that once I deliver the child I am carrying, my condition won't change drastically, as it can, and leave me unable to hold my new baby? Who's to say that because I have rheumatoid arthritis I won't develop cancer, as can happen, and require more of the country's economic health care dollars. A new study, now appearing in the March 2007 issue of the journal Arthritis & Rheumatism, shows that people with inflammatory arthritis, such as rheumatoid arthritis, have at least twice the risk of death from disease than the general population.

I am sure you've heard the latest number on the impact of arthritis on the economy: 128 billion dollars! And most likely that amount will continue to rise unless some money in the budget is directed toward research that will help create treatments to keep more people working and fewer people from becoming disabled.

This year, I still advocate for those same reasons, but this year I implore you to support the Act for an additional reason: To help increase the number of rheumatologists in this country. Now that I am a patient of a rheumatologist, I experience first hand the extraordinary wait times for appointments. I've spent six hours in a waiting room myself during an appointment and I've waited weeks for phone or e-mail response from my excellent but seriously overworked/overbooked doctor. I have also written an article for Arthritis Today magazine about the increasing shortage of rheumatologists. I sat at the American College of Rheumatology meeting when results of a study of the situation were unveiled and heard a well-known Penn economist describing how health care doesn't just take a huge bite out of the economy but how it IS the economy.

It is astounding to me how few doctors we'll have to care for people in the future, especially rheumatologists, when arthritis is now the number one cause of disability in this country and carries such a huge economic impact. It also is astounding to me how the shortage of rheumatologists will grow right along with the age of the general population. As the number of senior citizens increases over the next decade or so, the number of doctors available to diagnose and treat conditions associated with aging, such as osteoarthritis, is decreasing. It just doesn't make sense. You can help solve these problems by supporting the Arthritis Prevention Control and Cure Act. The provisions in that Act state that money will go toward research and to help ease the financial burden on doctors coming out of a residency who may choose a higher-paying subspecialty over the low-paying rheumatology subspecialty. Medical reimbursements for rheumatologists are so low that some doctors who have the desire to become a rheumatologist end up choosing another subspecialty so they aren't thrust into debt for years. Helping them through rheumatology training will ensure more rheumatologists in the future -- when we will need them dearly.

It's wonderful that science is getting closer to figuring out what goes wrong in the body to cause autoimmune diseases, such as rheumatoid arthritis, or how inflammation affects not only rheumatoid arthritis but possibly also plays a role in osteoarthritis. It's also wonderful that pharmaceutical companies and orthopaedic specialists are making progress in creating treatments for these conditions. However, as one prominent rheumatologist from the Hospital for Special Surgery in New York City said, "If we can't get the medications to the people who need them [due to a lack of rheumatologists in the U.S.] then shame on us."

Shame on us, indeed, and shame on you if you do not see how arthritis is every bit as important as the other chronic diseases in this country and support the Arthritis Prevention Control and Cure Act. Please say you will. I will do everything I can to preserve my health and reduce the amount of health care I personally consume. I hope you will do everything you can to help the growing number of people in this country who are being diagnosed with some form of arthritis to get the care they need, get the treatments they need and get the information they need to take care of themselves, too.

Thank you for your time.

Wow!

I can't believe it's been two months already since the last post. The holidays were a whirlwind, as usual, for all of us here at Arthritis Today, and for the past 4 to 6 weeks, we've been pretty darn busy here, not only getting new issues of the magazine ready, but also getting our new Web site up and running. Now you can access us through the Arthritis Foundation home page, or you can go right to www.arthritis.org/ArthritisToday. There, we give you bonus information that ties into topics in the magazine's current issue, and you'll be able to find favorite articles and advice from past issues. Over time, the Arthritis Today's home page will build nicely and provide even more services. It went live yesterday, so now.... back to blogging!

You might notice that we've changed the title of the blog from "Arthritis Today's Hot News" to "Arthritis Today's Hot Topics." The reason for the change is that you readers often send in questions that, indeed, become hot topics of discussion among the staff and extended family of Arthritis Today. But what's on your mind and ours isn't always what makes the headlines on the evening news. We dive into the deep end of the news current and come up with questions and other connections to explore. We'll explore some of those topics here, some in the magazine and some on the Web site. Check out all three places to stay as informed as possible. And keep your questions coming! (E-mail them to atmail@arthritis.org or send them to Arthritis Today, 1330 W. Peachtree St. NW, Suite 100, Atlanta, GA 30309.)

One topic that has been on my mind lately is pregnancy and inflammatory arthritis. Over those whirlwind holidays, I discovered I was pregnant with our fourth child – 8 years after our current youngest was born! I'm now 40, will be 41 when the baby is born in August, and am not yet through my first year since being diagnosed with RA. I was shocked, my husband was shocked and my rheumatologist was shocked. I had started on sulfasalazine back in September and was feeling great and could tell some inflammation had subsided by November. Ironically, that's when I got pregnant. Perhaps getting my arthritis under control got all my body's systems back to normal, making it conceivable to conceive.

Now that I have conceived, my rheumatologist has told me to stay off the sulfasalazine during the pregnancy, and that we can explore other treatment options, if I need help during the next several months. But so far, so good. Overall, I feel really good and really healthy. At times I can feel the pulling sensation and soreness in my wrists, hands, ankles or feet. But once I rest a little, I'm fine. I'm maintaining my exercise – walking, using the elliptical machine or ramp machine at the gym and lifting weights twice a week – and I'll add in swimming soon (once I need some relief from gravity on my growing belly!). Of course, I'm eating as healthy as possible, and that always makes me feel better.

I've gone through some extra testing, now that I am of "advanced maternal age," but I've had good news. Even with having RA and autoimmune thyroid disease, the tests show I have no more risk of having a baby with Down's syndrome or Turner's syndrome than a 20-year-old woman. The blood tests and ultrasound show a healthy, developing, active baby, for which I am grateful. I know many women with lupus and RA have had miscarriages – I had one years ago, myself – and the perinatologist I saw recommends my rheumatologists tests me for antibodies that could trigger one this time around. I am not worrying, but I admit I sometimes do feel the weight of all the information that needs to be sorted through during a pregnancy. One question I have is this: If I'm off the sulfasalazine for all these months, and the inflammation ramps up again, what effect will that inflammation have on the growing baby or my health during the pregnancy? Will I have an increased risk of pre-eclampsia or stroke?

I'm not the only one with questions, either. Last summer, when I was at the American Juvenile Arthritis Organization's annual conference here in Atlanta, I sat in on a lecture being given to young women who were planning or considering pregnancy. The amount of information given by the doctor who was speaking was astounding, and the room full of young women furiously took notes and asked questions for a good hour or so. There was a mother and daughter sitting right in front of me, and the mom leaned over to the daughter and whispered, "We have to get a calendar to keep track of when we have to do everything." That sparked an idea within me that I'd like to make a reality. I see a real need for young people with arthritis to have more information about what they need to do before, during and after a pregnancy to ensure their health and the health of their baby. While I'm developing this idea, please send me any questions you may have regarding handling pregnancy along with inflammation – whether for yourself or for someone you know. You can post a comment here that I'll see, or you can send your questions to the addresses I gave a few lines up.

Let's discuss this hot topic and find some answers. And if you have other topics you want to discuss here, just let me know.

Take care,
Donna Siegfried