Since
TOMORROW is the HUGE "Summit on Capitol Hill" Day for the Arthritis
Foundation. This is just one of the many "Annual" events AF puts on
throughout the year. There is the "Jingle-Bell Run", the "camp" for the
Juvenile Arthritis Patients, there are also other walks that are done
around the various states. In fact here in my part of Texas, we will be
having a get together in April! I am so hoping to be able to go! So,
since I am sure there are many people out there that are "aware" of the
Arthritis Foundation, and that they are a non-profit for Osteoarthritis
and Rheumatoid Arthritis, they do any and every thing imaginable to HELP
US as Patients, Caregivers, Family Members, Friends, and those that
have children with JRA or JA/Still's Disease. From being up front and
personal with our Nation's Congress, the AF is always reaching out to
help with some bills, laws, and even the different states platforms when
it comes to patients with these illnesses. AF addresses the disparities
involved, trying to find ways to get more researchers, more
medications, more educated physicians, nurses and all medical
professionals, and also work on some things with the DOD which involves
our own troops that come home all too often with some type of
"Arthritic" illness that takes its toll on their lives state side. The
AF brings "patients" in as Advocates, and Ambassadors, takes them to
Capitol Hill annually about this time in March each year, to visit the
different Representatives in our areas, and "educate" them about our
illnesses. We also tell them how they can help immensely by "supporting"
the Arthritis Caucus or even being a member of it. We talk to them
about the "real day to day" hellish at times living we face. We explain
how things need to change in order for us to be more able to work, to
take care of us, our families, and participate in many activities, but
without the proper treatment EARLY in the game, and a proper well
educated physician that knows his or her stuff, we often wind up totally
disabled, totally unable to take care of ourselves, or much of our
things, and then the quality of our lives are painful to not just us,
but spouses, children, family and friends.... OF course we all totally
understand that these types of medical ideas - whether a research study
or clinical trial, maybe a drug that is needing approval from the FDA,
thus possibly more of a wait to get it on the market, the VAST
arena" of prices on these "new medications" and how can patients possibly afford them? When you are speaking of a medication, one injected at home weekly, at the "cost of" $4,000.00 a MONTH, plus insurance either will NOT PAY any of it, OR the "co-pay" you would owe is so astronomical there is no way you can even pay that. Then the money it takes to get a research project off the ground. Researchers may spend years and years on ONE idea, ONE cure, ONE reason... for the illness in the first place. Then that may hit a wall, and after all the money and time, nothing comes of it anyway.
So, in front of the scenes and behind the scenes the Arthritis Foundation has brought and continues to bring patients together, in a bond, a purpose, and driven to "change" what is now just purely unacceptable. As I have thought of each of you all day long today, knowing that each of you are there and are "taking my place" to get the word out, to get Congress to really "listen" and act! I feel this will be a very incredible Summit this year and MANY things will start to be accomplished over the next few days.
My prayers, thoughts and well wishes to all of you there. PLEASE POST, email, tweet and so forth any and everything you can if you get a chance! I will be closely watching Twitter, FB, and the others, watching for any thing that may get posted. smile emoticon So, if you don't have time send the pics and so forth to me, and I will definitely be here, trying to do all I can to support the AF and all of you..... my well wishes and may all of you stay warm, healthy, and safe! Rhia Steele
arena" of prices on these "new medications" and how can patients possibly afford them? When you are speaking of a medication, one injected at home weekly, at the "cost of" $4,000.00 a MONTH, plus insurance either will NOT PAY any of it, OR the "co-pay" you would owe is so astronomical there is no way you can even pay that. Then the money it takes to get a research project off the ground. Researchers may spend years and years on ONE idea, ONE cure, ONE reason... for the illness in the first place. Then that may hit a wall, and after all the money and time, nothing comes of it anyway.
So, in front of the scenes and behind the scenes the Arthritis Foundation has brought and continues to bring patients together, in a bond, a purpose, and driven to "change" what is now just purely unacceptable. As I have thought of each of you all day long today, knowing that each of you are there and are "taking my place" to get the word out, to get Congress to really "listen" and act! I feel this will be a very incredible Summit this year and MANY things will start to be accomplished over the next few days.
My prayers, thoughts and well wishes to all of you there. PLEASE POST, email, tweet and so forth any and everything you can if you get a chance! I will be closely watching Twitter, FB, and the others, watching for any thing that may get posted. smile emoticon So, if you don't have time send the pics and so forth to me, and I will definitely be here, trying to do all I can to support the AF and all of you..... my well wishes and may all of you stay warm, healthy, and safe! Rhia Steele
 |
| http://www.arthritis.org/advocate/advocacy-summit/virtual-summit/ |
No comments:
Post a Comment