Colleen -- Thank you for sharing this wonderful news. After all Caitlin has been through over all these many years, it must be great to simply be able to get out of bed JIA free and have a somewhat 'normal' day. I am so happy for her and for you. May her remission continue for a long, long, LONG time.

And thank you for your dedicated and continuous efforts in bringing awareness to inflammatory arthritis diseases -- for every child that does well w/JIA treatments, there are still many others that daily face the challenges of JIA and RA. May we all work toward affordable access to health care to treat JIA and RA and also encourage support of medical research to find a cure.

Granted, not a very motivating or inspiring speaker -- I would have liked Sebelius to have pointed out that there are 100 different types of arthritis, including autoimmune diseases like rheumatoid arthritis, but the video was less than 2 minutes. It’s not likely she wrote the announcement. Perhaps the Arthritis Foundation, whose involved in World Arthritis Day should have prepared a better script for her, and, who knows, perhaps it did prepare what she said. After all, the theme for World Arthritis Day 2011 was “Move to Improve” and it seemed to focus on osteoarthritis. Perhaps your disappointment w/the video would be better directed at the AF. If you go to the link from AF’s home page to fightarthritispain.org, it says:

Move Around the World for World Arthritis Day, October 12th

“Choose your weapon against arthritis pain and help us reach our goal of covering the distance around the world -- 24,900 miles! Walk, hike, jog, swim (or however you move) as many miles as you can before October 31, 2011.

Join the Arthritis Foundation community in supporting the 27 million people living with osteoarthritis”(1)

While I agree there needs to be more awareness that rheumatoid arthritis is “not just arthritis” but a serious autoimmune disorder that affects more than just joints – and more than just adults but children as young as two -- I’m not that critical of Sebelius’s message. I don’t expect Sebelius to be the spokesperson for RA, I expect her to be working to implement the new health law, the Affordable Care Act (ACA), and to keep it from being dismantled and defunded. Yes there needs to be better understanding of RA, research for new treatments, prevention and a cure, but equally important is that people with chronic diseases have access to affordable health care. Right now, an uninsured person w/RA could be denied coverage in the individual insurance market for having a preexisting condition – but in 2014, the ACA bans that discriminatory practice. There were children w/pre-existing conditions denied insurance until the new health law in 2010 banned insurers from denying or limiting coverage. (2)

Yes, we need to make the Secretary of Health and Human Services as well as the President, aware of the plight of those of us with RA – children, young adults, and people like myself whose had RA for 35 years – but – do not forget the Members of Congress – it is they who will be making decisions about the federal budget and programs that affect health care and medical research.(3)

And, yes there needs to be more awareness that rheumatoid arthritis is an autoimmune disease, a very different disease than osteoarthritis. Perhaps it’s time for a separate advocacy movement for autoimmune diseases like RA.

1. http://www.fightarthritispain.org/index.asp?L1=302. http://www.healthcare.gov/law/features/rights/childrens-pre-existing-conditions/index.html3. http://www.kaiserhealthnews.org/Stories/2011/October/16/Health-Programs-Face-Sharp-Automatic-Cuts-If-Super-Committee-Deadlocks.aspx

My insurance stopped covering the osteoporosis med I was on, when the leading osteoporosis med, Fosamax went off patent and a generic became available. Because of my medical history, my doc felt the particular osteoporosis med I was on was best for me -- so we appealed and my insurer approved continuing the same drug provided I paid a higher copay.

A growing concern I have is the affordability of expensive drugs like biologics to treat RA. With the escalating cost of health care, more health insurance plans are classifying these types of meds as “Tier IV drugs.” For Tier IV drugs, instead of paying a copay – the consumer pays “coinsurance” -- a percentage of the actual cost of the drug. Coinsurance is often 20 to 30 percent of the cost of the drug – for a drug like a biologic, that can be several hundred dollars a month. The drug companies do have financial assistance programs for the underinsured, but not everyone is eligible.

New treatments can slow the progression of RA and prevent disability -- but we need affordable access to the drug treatments our docs feel are best for us. If not, then poorly managed RA ends up costing the health care system more in the long run, as well as unnecessary pain and suffering for those w/debilitating, chronic RA.

JM,

I’m very sorry to hear that your young daughter has JIA. I was in my 20s when I was diagnosed, and when people would say how young I was to have RA, I replied kids as young as two got RA.

I know it was hard for my parents to see the affects of RA in my life, they must have felt helpless, but I knew I had their love, support and willingness to do whatever they could for me. Knowing that made it a little easier facing the challenges of RA.

I’ve had RA for 35 years now and I’ve seen a lot of new developments and treatments over the years that can slow the progression of RA and sometimes lead to remission. I hope your daughter will benefit from them, as well as the cutting edge medical research on the immune system. Recently the Nobel Prize was awarded to Bruce Beutler for his research in immunology and discovery of tumor necrosis factor, which was the foundation for the development of the RA drug Enbrel. Beutler is heading up a new research center with the University of Texas Southwestern to further study the immune system. My hope is that his research team’s findings will led to new and better treatments for RA and who knows perhaps a cure in your daughter’s lifetime. So be hopeful. All the best to you and Julia.

Pat59, Thanks for posting this important reminder. Definitely not a good idea to leave one's prescription drugs in a hot car when off doing other errands. Also not a good idea to let drugs sent through the mail sit outside in a mailbox or outside when the temperatures are high. It's always a good idea to check the drug info sheet that accompanies each prescription to read the range of temps that meds should be stored at. Many of these drugs are expensive and would be difficult to replace if damaged by the heat. Thanks again for the tips about storing meds.

Excellent advice and suggestions. Managing life with RA or OA can be challenging, so we tend to put exercise/moving at the bottom of the list of things to do, but making the time to do something as simple as stretching can help maintain range of motion enabling one to continue to be able do the basic activities of the day, and easy-to-do isometrics, can help strengthen muscles.

Taking an AF warm pool therapy class, helped me a lot and I'd advise folks to give it a try. The warmth of the water was soothing and the bouyancy supports you, so exercising/moving is easier -- plus you are in a group of others w/RA, OA or fibro -- that encourage and support each other -- and it's fun.