March 2, 2013
Good morning! Why am I awake at 5:00 AM? The Juvenile Arthritis March (JAM) fundraising walk is this morning at the Mall of America! I’m taking photos again for the fourth year, I think? It’s always such a great, positive event – usually with a large turnout. I’ll post a link to the photos once I get them uploaded. Although I’m not sure if I’ll have time to do that before I leave for the Advocacy Summit in D.C. Monday morning. Yikes! I can’t believe I’m leaving so soon for that already.
More info about JAM can be found here, if you’re interested:
January 22, 2013
“We hold these truths to be self-evident, that all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness.” - The Declaration of Independence, 1776
So I am a day late posting this, but better late than never, right? I didn’t tune in to ALL of the inauguration coverage that was happening yesterday (and before yesterday), but I did catch some of it and listened to President Obama’s speech, which I liked. I’m glad that he mentioned health care reform in it, because of course that is something I am passionate about and support. Publicly debating politics or getting preachy about political issues isn’t really my thing, but I will stand up for what I believe in and I don’t expect others to agree with me. I voted for Obama again this election, as I did four years ago and I’m incredibly happy that he won. I suppose I would consider myself a Moderate Liberal – more fiscally conservative but socially liberal. I’m not for outrageous wasteful government spending (who is, really?), but I also believe in many of the social programs that exist to help people. And of course health care is a huge issue for me and one that has affected my own life, very personally, in so many ways. Speaking of that – I’ve been having some major health and arthritis-related things going on over the last month, which I will update about after this post. I promise!
Health care should not be a luxury or privilege for few, but it should be seen as a basic human right, and this I believe with my whole heart and mind. I don’t blindly think President Obama or the Democrats are perfect by any means, but I do sincerely hope that the President and people across all parties will realize the importance of improving our corrupt, archaic, and broken health care system and will do something about it. There are too many people suffering just in our own country because they can’t get decent, affordable medical care when or if they need it. This is wrong and must change.
Anyway, here are some quotes from President Obama’s speech yesterday that stuck with me:
“For we, the people, understand that our country cannot succeed when a shrinking few do very well and a growing many barely make it.
We, the people, still believe that every citizen deserves a basic measure of security and dignity. We must make the hard choices to reduce the cost of health care and the size of our deficit.
We do not believe that in this country freedom is reserved for the lucky or happiness for the few. We recognize that no matter how responsibly we live our lives, any one of us at any time may face a job loss or a sudden illness or a home swept away in a terrible storm. The commitments we make to each other through Medicare and Medicaid and Social Security, these things do not sap our initiative. They strengthen us.
It is now our generation’s task to carry on what those pioneers began, for our journey is not complete until our wives, our mothers and daughters can earn a living equal to their efforts.
That is our generation’s task, to make these works, these rights, these values of life and liberty and the pursuit of happiness real for every American.”
To read the entire transcript of President Obama’s speech, go here:
April 30, 2012
Apologies for taking a while to post again, but I’m dealing with an RA flare-up now – my right thumb and forefinger joints are painful and swollen from yard work I did last week. I know I shouldn’t have been raking and pulling weeds, etc., but I was working for a friend who agreed to pay me to clean up his yard. As I am currently unemployed, well, I needed the money. But in retrospect I wouldn’t have done it if I had known my hand was going to flare up. I have a rheumatologist appointment tomorrow and I’m hoping he can give me a cortisone injection to make this go away. I’ve been taking 20 mg of prednisone for weeks and I’m pretty desperate to get off of it.
Anyway, onto the Summit news! I can’t stress enough how glad I am that I decided to attend The Arthritis Foundation’s Advocacy Summit in D.C. The event was incredibly organized and professional which I found impressive. It was also exciting and empowering just to be with people who were all passionate about improving the lives of those who suffer from arthritis. I met so many nice, interesting people who either have arthritis themselves or have children who have the disease. I loved talking with many of them and hearing their own stories. The Summit also ignited much more of an interest and passion in me to continue doing advocacy work. Actually, I think I would really like to move to D.C. if possible. I fell in love with the city almost immediately and could seriously see myself living there. I don’t know how difficult it would be to relocate, but I decided I’m going to try.
April 18, 2012
It’s 1:15 AM and I’m exhausted but I want to write a little update about yesterday’s events. My Minnesota group met with Senator Al Franken yesterday evening at his office on Capitol Hill. The meeting went well, I think, and he seemed interested and receptive to what we had to say regarding him supporting arthritis issues and the Patients’ Access to Treatments Act of 2012 (H.R. 4209). Supporting this bill would help improve access to medications for people with arthritis which can prevent disability. It would also end the discrimination and excessive cost-sharing of these medications with regard to insurance companies forcing patients to pay incredibly high co-pays and co-insurance because of how many of the drugs are designated as “specialty tier” medications (i.e. biologic medications which cost thousands of dollars per treatment/month – I currently take one of these, Remicade). Even though Senator Franken spent about 25 minutes with us (which is a long time for these meetings, we were told), I admit I am disappointed that I didn’t get a chance to talk to him and tell him my story of living with arthritis. I didn’t even get to say my name! So, yeah, that’s a bummer – especially since he is the one legislator with whom I was looking forward to speaking. Oh well. Hopefully I’ll get another chance sometime.
Today was a really good day though. The weather was warm and sunny and beautiful. Walking around the Capitol was a surreal experience – I couldn’t believe I was actually there. Our group also sat in for a bit on a session of the House and that was really interesting to see. Other fantastic things yesterday included inspiring, motivating speeches and training we had before our Senate meetings. I continue to meet really nice, wonderful people from all over the country who are here for the summit. And, kind of fun, yesterday evening after dinner I did a little radio interview and talked a bit about how arthritis affects my life. These “hometown radio interviews” are supposed to get passed on to our local stations, however nobody can tell me more information about when they’ll air. It was fun to do though! After Day 2 of the summit, I’m incredibly wiped-out and my ankles are killing me, but I’m also more energized and motivated now than I have been in a long time. The inspiration and excitement continues…to Day 3, I hope!
And – I did start to upload some photos to Flickr if you’re interested:
Ok, time to pass out.
April 16, 2012
Well I made it to Washington, D.C. today and through the first day of the Arthritis Advocacy Summit. Most of the day was spent traveling though, so I am really exhausted (I only got about three hours of sleep last night, which didn’t help). I made it in time for the group dinner and first advocacy training which outlined our agenda for the rest of the summit and especially our Senate and House meetings on Capitol Hill. Tomorrow are the Senate meetings. This morning and during my flights I was feeling kind of anxious and nervous about participating in the summit – not knowing what to expect, I suppose. But after meeting up with my friend Trish (who works for the Arthritis Foundation’s Upper Midwest Region chapter and is our group leader) and then meeting the other people in our group, I feel much more comfortable and excited about being here. Listening to other leaders speak about what we’ll be doing on Capitol Hill was also really inspiring. So yes, I am VERY GLAD I decided to do this! I’m excited to see how the meetings go tomorrow and to just be on Capitol Hill and being a part of our governmental process. I hope I’ll be able to pull myself together and sound halfway intelligent when I have to speak to the legislators to tell them about my passion for arthritis advocacy and about my own personal story of how arthritis affects my life. I think I can do it though.
Anyway, I just wanted to give a little update on Day 1 of the summit. I’ve already met some really nice people from all over the country who all have incredible arthritis stories of their own. And I’m quite impressed with the event so far. I’ll try to update every day while I’m in D.C., but now I must collapse into bed.
IGNORING ARTHRITIS IS UNACCEPTABLE!
March 9, 2012
I’ve been trying to get more involved doing arthritis advocacy work and recently I’ve been sending emails to my senators and representatives in Washington, D.C. urging them support various arthritis issues and legislation. Here’s the transcript of the email I sent today to Representative Erik Paulsen (R). I have no idea if he actually reads any of these, but I figure that it can’t hurt to try, so I’ll keep sending them. Hopefully someone is reading them.
If you want to send an email or letter to urge your representative to support this legislation, click HERE.
Please Co-Sponsor the Patient Access to Critical Therapies Act!
March 9, 2012
Dear Representative Paulsen,
As someone deeply concerned about arthritis, I am writing to ask you to
become an original cosponsor of legislation to improve access to the
critical treatments that can keep me, and my loved ones, active and
productive citizens. Biologic drugs can now prevent patients with
conditions such as rheumatoid arthritis, lupus, and psoriatic arthritis,
from becoming disabled, seriously ill, or even dying.
Unfortunately, many health insurance policies are moving these critical
medications, such as biologics, into “specialty tiers” that utilize high
patient cost-sharing methods known as “co-insurance”. This
fourth/specialty tier now commonly requires patients to pay a percentage
of the cost of medication – anywhere from 20% to 50%, which can often be
hundreds or even thousands of dollars each month for a single medication -
rather than a fixed co-payment amount.
Congressman David McKinley is introducing legislation later this month,
the Patient Access to Critical Therapies Act (PACTA), that would treat
these specialty drugs the same as Tier III non-preferred drugs. Under his
legislation, commercial health insurers would impose the same co-payment
obligations for specialty drugs as they already do for Tier III
medications. Providing insured patients access to these treatments will
allow me and many more of your constituents to remain in the workforce,
raise their families, and avoid becoming permanently disabled or seriously
I urge you to step forward and become an original co-sponsor of PACTA and
support your constituents who have chronic, life threatening, and
disabling conditions. Please contact the Legislative Health Assistant in
Rep. McKinley’s office, at x54172, to become a co-sponsor of this
I have been on several of these “specialty” biologic drugs since about
2003 and I am also constantly in debt and trying to keep my head above
water to pay for these medications. If I don’t have the medication I will
most certainly become crippled. There are so many people out there in
similar situations to mine, and it’s not fair that we must be at the mercy
of the insurance companies and the drug companies just in order to live a
relatively normal life. People shouldn’t have to suffer because they can’t
afford to pay for medications. Please help.
Thank you very much.