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.
March 2, 2012
Tomorrow morning the Arthritis Foundation, Upper Midwest Region chapter, will be hosting its annual JAM (Juvenile Arthritis March) fundraising walk at the Mall of America in Bloomington, MN. I will be arriving at the event at an insanely early hour to get ready to take photos of the walk. This will be my third year photographing JAM and I’m looking forward to it, of course! It’s always so wonderful to see all of the families and kids who participate to raise money to find a cure for arthritis. Coming together as a group for an important cause really is an inspiration (maybe sappy, but true). I’ll post some of the photos of the walk soon – hope I get some good ones!
For more information about JAM and how to get involved, click here:
February 17, 2012
Ok, I did it. I registered today.
I’M GOING TO D.C. IN APRIL!!! Whooo!!!
February 16, 2012
So…should I go? I signed up last year and then canceled because I was going through a weird time of having anxiety attacks (see older posts for more info on that). I’ve been wanting to go to this summit for a few years now and I keep finding reasons (excuses) to not go. Well, the main reason is that I can’t really afford it. Right now I’m trying so hard to pay off bills and to get out of debt. Yet here come the expensive medical bills once again. It’s a never-ending cycle.
Anyway! I’m also bummed out that I missed the chance to apply for two different travel grants/scholarships offered by the Arthritis Foundation for the summit. I’m always missing deadlines, dammit! But, you know, my instinct keeps telling me to just go for it. I would love to be able to meet with members of Congress to urge them to support funding for arthritis research and other arthritis and health care issues. It’s something that I’m very passionate about and I want to get more involved with the political side of advocacy.
Here’s more info online about the summit: