Tuesday, September 15, 2009

2009 Capitol Hill Advocacy Day for Lupus Research!

Have you ever wondered what it feels like to make a difference? I felt like a megaphone as I gave a voice to Lupus patients on Capitol Hill on Tuesday, September 15th.
Through my involvement with Lupus LA, I found out that the Lupus Research Institute and the SLE Foundation 2009 Capitol Hill Advocacy Day was coming. Although our financial situation isn't stable (whose isn't these days?), I knew I had to attend. I asked my husband if I could use his frequent flier mileage and hotel reward points to be a representative for Lupus patients in Washington, DC and he wholeheartedly agreed. My husband--and family--made it possible for me to participate and I am grateful for their constant and ceaseless support in my journey to raise Lupus Awareness.

Last year, I attended my first Capitol Hill Advocacy Day. It was inspiring and awesome. I felt like my presence made a difference. Telling my story to elected officials (or more likely, their staffers) was amazing. Some people I spoke with had never heard of Lupus, while others had personal experience with the disease, with over 1.5 million Lupus patients in North America, it isn't unusual for "someone you know to have Lupus". Living with Lupus, I know first-hand what it is to face issues of being a patient with a chronic illness, and as weird as this sounds it was my "pleasure" to share these challenges with lawmakers and their legislative aides. Whether they knew about Lupus before my visit or were newly educated -- I knew that my presence was effective.

What happens on a Capitol Hill Advocacy Day is that an organization or coalition (such as Lupus Research Institute) gathers their constituents in Washington, DC to have face-to-face meetings with the elected officials (or their staffers) to discuss potential legislation and issues tied to the cause that they represent. There is always a ton of Congressional business going on at any given time, but with health care reform now at the forefront of the President's agenda, September 15th was a perfect time to have meetings on the Hill to advocate for Lupus Research and Awareness. (Don't get me wrong, if you can ever attend an Advocacy Day for an issue or cause you are passionate about I definitely recommend it, timing notwithstanding!) This year, our appointments were scheduled by lobbyists that represent the Lupus Research Institute throughout the year. Each appointment is important--though the meeting may only last 15-20 minutes, it is vital to be a face of Lupus and a representative of the Lupus community. Meeting space is at a premium in Congressional office buildings and are often held in a hallway or by a window--even leaning against a wall. The location doesn't matter as long as the meeting happens!

Though it had been over a year since my last visit to the Hill for Lupus, when I was walking the halls of the Rayburn House Office Building my sense of empowerment and inspiration returned immediately. I couldn't help but feel a tremendous sense of history and American pride. Knowing that somehow by entering the building with a purpose that I was transformed, I wasn't just Amanda or even LA Lupus Lady anymore but I was an advocate for Lupus Research on Capitol Hill. My megaphone turned on, I told my story and asked Congress to support Lupus Research and increase awareness by educating medical professionals. (WOW! This is so cool, I'm advocating for Lupus!)

My first meeting of the day was an appointment with my Congresswoman's (Representative Diane Watson) Health LA (Legislative Aide) to share my story and get to work for Lupus. The appointment went great. I cleared building security (much like an airport security process) and made it to the office in plenty of time to savor the triumph that is my journey. Waiting for the meeting before mine to end, I sat in the outer office and enjoyed the decor. It isn't everyday that LA Lupus Lady gets to sit on a couch surrounded by photos of (both) Clintons and political mementos. I soaked it all in. Then I was greeted by the Health LA and ushered into the office of the Honorable Diane Watson. I thought the outer office was incredible, but the idea of meeting in the actual Congresswoman's office took me aback. Somehow, I gathered my thoughts and made it through my appointment. Hitting the talking points, the ideas that LRI wanted advocates to mention in our meetings and getting personal by telling the story of my diagnosis, I truly felt that this appointment was worth the trip--and this was only the first meeting.
Because I had some time before my next meeting with Senator Feinstein's Health LA, I was able to drop-in on some other offices of California Representatives. "Drop-ins" are when you do not have a scheduled appointments and you stop by an office to see if the Health LA has a free moment to hear your "quick pitch"; if the Legislative Aide is unavailable, then you leave behind the printed information and follow up with phone calls and an e-mail, hoping that the issue will get to the Member (of the House). I was able to drop in on the offices of the Honorable Members of Congress that represent many different regions of California including: Brad Sherman (the Congressman from Sherman Oaks who inspired me to find a cause I believed in and advocate for it.), Sam Farr, Joe Baca, Xavier Becerra, Lois Capps and Loretta Sanchez.
The constituents from California met with the Health Legislative Aides from both Senator Feinstein's and Senator Boxer's offices. Then I went to meet with Hannah, the Health LA from Congresswoman Jane Harman's office ; she was very receptive and eager to learn about Lupus. After that meeting, while walking through the hallway I saw Congressman Solomon Ortiz of Texas, to whom I offered an orange Lupus Awareness bracelet. He accepted gladly and smiled with it for a photo op! Moments later, after I turned a corner to leave I saw Congresswoman Harman in person. I told her that she was a woman who lead me to get more involved in politics and that I was active in Young Democrats of LA and her speaking to the importance of youth participation got me to volunteer and that I had a great meeting with Hannah and hoped that I could count on her support for Lupus. She said I could and we took a photo.
That is what I thought would be the end of my advocacy on Capitol Hill. However, when I returned to my hotel room I had received a phone call from Brenda, the Health LA in Congressman Joe Baca's office, asking if I was available to discuss the Lupus information that I had dropped off at her office. Of course, I was available--the reason I was in DC was to advocate for Lupus with members of Congress or their staff.
The next morning, as I prepared for my second day of Advocacy on Capitol Hill, I thought about many of the reasons that I was there. I thought about my friend Heidi Rusche, who passed away from Lupus complications. I thought about Bonnie Romoff, my first Lupus support group leader ,who did the best she could yet still succumbed to the illness. I thought about my 'Lupies' online, people with Lupus that I know through Facebook and Twitter and how I wish that together we can work to fund research to find a cure for Lupus. I thought about my own struggle with SLE and I decided to stop thinking and start advocating.
And then it was Capitol Hill Day Two!! I can't believe that my Lupus journey has taken me from a multitude of doctor's offices all the way to the US Capitol. Yet there I was, in a meeting with Brenda, Congressman Joe Baca's Health LA speaking to her about the LRI and how the Congressman can help fund Lupus research. I don't want to speak in hyperbole but the experience of speaking with Brenda, about innovative Lupus research and the need for increased medical professional education was the highlight of my trip. I saw that Congressman Brad Sherman's office was directly across the hallway from Congressman Baca's office and since I know the Congressman personally I wanted to see if he was available to see me for a hug and a photo op? He was, and of course that's when I went in for the "quick pitch" for Lupus Advocacy! Congressman Sherman was incredibly nice--but then again, he has always been kind to me and my requests for improving constituent relations.
Later in the day, there was a Town Hall meeting scheduled with Senator Barbara Boxer. I arrived early to get a good location. At last year's Advocacy Day I learned that the Senator's Town Hall meetings are full, crowded with groups of advocates representing an array of issues that effect California. The Senator was running late and when she arrived she told the assembled group that there would not be time for a Town Hall today as she was expected on the Senate floor in mere minutes. She only had time for two group photos before she had to run, and literally she ran out of the room - and I followed along as I quickly told her quickly about the importance of funding Lupus research.
As I was leaving the Senate building, I left some other Senators the LRI's Advocacy Day packet of information via the "drop-in". My surprise at getting a meeting from a "drop-in" with Brenda of Congressman Baca's office was surpassed when a "drop-in" led to an instantaneous meeting with New Mexico Senator Tom Udall's Health LA, Ben! What an incredible way to end my 2009 Lupus Advocacy!
On Wednesday night, I played tourist and enjoyed the Washington DC monuments. The monuments are always impressive but with the spotlights shining they become something more. Then exhaustion set in... somehow I made it to my hotel room packed and got to Dulles.
Now I'm back home. Just because I'm not in Washington, doesn't mean the megaphone is going to be put down. I'm LA Lupus Lady and I advocate for Lupus wherever I am.

Monday, September 14, 2009

I'm in DC for Lupus because...

September 15, 2009 - Lupus Research Institute Capitol Hill Advocacy Day!

I am in Washington, DC today because I have Lupus. I am doing what I can and then some. I never would have thought that the diagnosis of a chronic illness would be the start of a journey that took me from long suffering Lupus patient into an advocate on Capitol Hill.

I have lived with Lupus for more than a quarter of century. I am here because my husband has generously allowed me to use his frequent flier mileage awards and hotel points to receive this luxury of being able to travel to represent the "patient voice for Lupus Research." I am not paid to be here. I am not a "professional" lobbyist. I am here today because I am passionate about improving the quality of life for those who have Lupus and those that love them.

I am here in Washington, DC because 26 years ago when I was diagnosed with Lupus, my life expectancy was 5-7 years. Since I have been diagnosed with Lupus, the FDA has not approved a single drug treatment for the illness. There are promising new prescriptions drug treatments in the crucial clinical trial phase but until there is a new FDA approved Lupus drug there will not be a cure. I will not stop advocating for patients who suffer from Lupus until there is a cure.

I am dedicated to representing those with Lupus who cannot be here in DC. If you want to be a part of Capitol Hill Advocacy Day join in. If you can pick up a phone, you have a voice. Call your local Member of Congress. Let your voice be heard. If you don't call, who will? You can call your Representative's local office or their DC office. If you don't know the DC office number for your Congressperson, look online or call the Capitol Switchboard, the number is (202) 224-3121.

In my last blog, I got specific about what the LRI (Lupus Research Institute) is asking of Congress. Please read it and when you call feel free to use it as a guideline for asking your Representative to work to make sure that your request is heard. You can call your Senator and tell him/her that you live in his/her home state and that living with Lupus is a challenge you tackle every day.

I feel it is important to lobby Congress to promote the interest of Lupus patients, families and researchers. My favorite part of Capitol Hill Advocacy Day is being able to put a face on the disease. I have Lupus and I vote. I have Lupus and I advocate. With over one and a half million people diagnosed with Lupus in North America, almost everyone knows someone with Lupus. Not all Lupus patients have the strength and ability (whether it be financial or physical ability) to attend the LRI's Capitol Hill Advocacy Day which makes it all the more special for me.

I like knowing that as a participant in Capitol Hill Advocacy Day, I am part of a unified coalition of Lupus organizations working together to do what working alone we would be unable to achieve.

Pictured above the LA contingent attending the Lupus Research Institute Capitol Hill Advocacy Day meeting before the Meetings with Members of Congress! From left: Dorothy Ellis, me (LA Lupus Lady), Linda David Executive Director of Lupus LA, Adam Selkowitz Chairman of Lupus LA's Leadership Council and Elyse Leon-Reyes Patient Services Manager for Lupus LA.

Sunday, September 13, 2009

LA Lupus Lady in DC!

After arriving in DC on the "red eye" from LA and heading to my hotel to relax for a bit. My friend Catherine met me and we walked around the city took some snaps as I settled into to what will be a busy week in Washington. As you can see, I went straight to the President's House...

I am here as a part of the Lupus Research Institute's Capitol Hill Advocacy Day. The National Coalition is the patient voice for Lupus Research. I have basically copied verbatim from the Lupus Research Institute's handout for participants in the 2009 Capitol Hill Advocacy Day and www.lupusresearchinstitute.org - click it and learn what you can do for Lupus!

A few of my Lupus friends have asked what can they do? Well, even if you aren't here with the National Coalition in DC you can let your voice be heard. Call your Congressperson and Senators let them know that you are a Lupus patient and a constituent of theirs and you and the LRI (Lupus Research Institute) urge Congress to sustain the nation's medical research enterprise and support the House funding level of $31.2 billion for NIH in the Fiscal Year 2010 Labor-HHS Conference Appropriations Bill.

-- Congress approves the budget for the NIH which funds various biomedical research including clinical trials and the research that can and will lead to a cure for Lupus. the request for $31.2 billion amounts to a 3 percent increase above last year and is $400 million than the Senate proposal.


The LRI National Coalition requests that Members (of Congress) support a provision in both the House and Senate FY2010 Labor-HHS Appropriations Bills to provide $1 million to the HHS Office of Minority Health to continue a new nationwide lupus education program for health professionals.

-- Lupus is up to three times more common among African Americans, Hispanics and Native Americans and affects over one-and-a-half million persons, 90 percent of whom are women.
Most Lupus patients often visit multiple doctors and go years before receiving a correct diagnosis.

Both House and Senate versions of the Fiscal Year 2010 Labor, Health and Human Services Appropriations Bill have recognized the urgent need for improved lupus education. Each bill provides for $1 million to the Office of Minority Health in the Department of Health and Human Services to build a national lupus health education program for health education providers.

The official wording of the requests for Members of Congress is how the Lupus Research Institute forms their official request, so if (when!) you call it will help to use the same wording. If you have any questions, feel free to ask me. I am still learning how this part of the lawmaking process happens. It isn't as easy as singing "I'm just a bill. A bill on Capitol Hill."

More as my DC adventure continues...