Earlier this winter I was invited by the Immune Deficiency Foundation to come to Washington, DC to attend their “Capitol Hill Day”, and to meet with my legislators to discuss healthcare funding and reimbursement affecting people who need infusions of IgG to maintain a healthy immune system. If you are a regular reader, you know that I am one of these people. I have CVID and receive monthly infusions of IgG, which is a component of blood, extracted from plasma.
Wednesday night: 9:48 pm (EDT)
We had our dinner and training session for tomorrow. I got my appointments. I’m going to a ‘constituent breakfast’ with Senator Durbin. Throughout the day, I’ll be meeting with someone from Senator Obama’s staff, and two House Reps. It was nice meeting some of the IDF staff, and other Primary Immune Deficiency patients. A special guest was the Mom of “The Boy in the Bubble”. She is the one responsible for getting this bill introduced by one of her legislators. Some of the patient stories were horrific. One woman was told by her insurance company, “We’re not approving your IVIG because it’d be cheaper for us if you died.” This kind of bullshit should be criminal! “Oh, the U.S. healthcare system is fine!” We have a great healthcare system—as long as you’re not a consumer. For one of the richest countries, we have the shittiest healthcare system for an industrialized nation. But that’s not news.
I’m looking forward to the meetings and reporting further. (Although this is all going to be in one post most likely.) The unfortunate part of being in DC right now is that, the Youth for Hitler alumus, with the big hat and red Prada shoes is here at the same time. That’s a pisser. Oh, our dinner meeting got bumped to a smaller room because vp (evil incarnate) cheney took our original room for some function. church and this administration, I’m going to wretch before I get back to Chicago.
The weather is great. I got here mid afternoon, checked in, and went out to enjoy a few hours outside. The hotel is near Dupont Circle –aka “the fruit loop”. That’s a bonus. So I walked down to the “FL”, go to Kramer’s Bookstore and Restaurant (A GREAT Place), and get a table outside on the sidewalk, order a drink, and appetizer and pull out the laptop and relax for an hour and half. I also don’t get out the door without buying a book, “The Best Buddhist Writing 2007”. This is one of my favorite bookstores. I discovered it last fall when I was here. I’m rambling. I have to be ready to roll at 6:30, and you may remember, I’m NOT a morning person. So, signing off for tonight.
Thursday morning, April 17, 6:25 AM. (EDT). I am SO NOT a morning person. Luggage is checked with the bell station. I’m out to get on the bus. Bus is rolling out at 6:45 SHARP! NOT! One person in our group is in a wheelchair. The fucking bus driver doesn’t know how to operate the wheelchair lift. I shit you not, it is 8:00 before we finally leave the front of the Hilton. Traffic is rerouted due to the pope. The President of the IDF is sitting next to me. She keeps saying, “This route doesn’t seem right.” We are assured that it is, that the bus driver knows what he’s doing. We’re deep in Maryland before this imbecile admits that he’s lost. I posed the question, “How does someone get a job in transportation in Washington, DC and not know where the Capitol is?!?!” There is another Illinoisan in the group. We miss our breakfast with Senator Durbin. We’re bummed and pissed. We are finally dropped off at the Capitol, nearly two hours late. A couple of Reps were supposed to get awards from the organization. That didn’t happen either. Those of us who don’t have 8:30 appointments, are able to go to the Capitol building and chow down some breakfast before our previously reserved room is cleared.
We are in DC to Lobby our legislators about HB 2914, which is a Medicare reimbursement add on so that our medical providers can get appropriate reimbursement. Currently, providers get reimbursed for the IgG product, but not for infusion nurses, nor the IV pump. (One woman told about how she had to give herself her own IV, because insurance would not pay for the infusion nurse.) Because our medical conditions are somewhat rare and unusual, medical providers don’t always know how to treat us. Often, we are sent to Oncology centers, to Chemo suites for the infusions. Chemo patients get IgG as a boost to their chemo. For us, IgG is not the add on. It’s the primary ingredient. There are different manufacturers. Each of us responds differently to each ‘brand’ of blood product. We can have adverse reactions to the infusion. I’ve had reactions a few times, fortunately not severe. All this to say that IgG is not generic, as one physician told one of us.
It’s another beautiful Spring day. It’s a great day to be walking Capitol Hill. We are off to our first meeting. It is with Rep’s office of my other Illinois compatriot. IDF has set it up so that we have an ‘escort’, either staff person, volunteer, or blood product manufacturer employee. This person introduces us, and gives the ‘quick and dirty’ of why we’re there—tells about the proposed bill that we are hoping our legislator will support. As constituents/IVIG patients, we are there to tell our stories, and why it (the proposed bill) is important to us. We are the ‘human faces or stories’ of IVIG recipients. The first meeting goes OK. The person we meet with at the Rep’s office does not seem very engaged—like he’s meeting with us only because he has to.
We have some time before our next meeting, with Sen. Durbin’s office. We will have a different host/escort. We arrive sans escort, early. We apologize for missing the breakfast, and relay the bus driver story. We are told that it’s too bad as this morning’s breakfast was a small group and we would have actually had some face time with the Senator. We are doubly bummed and pissed at the bus driver. Our escort arrives, and we are introduced to the liaison that we are to meet. After our ‘presentations’ she asks a number of questions, takes notes, and is much more engaged than our first meeting. We feel this meeting was a success. We have almost two hours before our next appointment. We walk over the Old Union Station for lunch. Our next meeting is with Obama’s Office. This meeting seems as successful as the last one. The liaison we meet with is equally engaged, and tells us she will bring the issue up with the other medical liaisons at their weekly staff meeting. Our final meeting is with my Representative, Jan Schanowski. She actually comes out to meet us, shake our hands, and apologize that she has to catch a plane. Her staff person that we met with listened to our stories and took notes, like the others. She also asked us some really good questions about the legislation, and made connections, “Rep. S is on ‘this’ committee which has crossover to the committee that deals with medical. It was our best and most successful meeting of the day. As we are leaving, returning to the hotel to collect our luggage and head to the airport, our escort for this meeting says to us, “You are lobbyists!”
This day was a really cool experience. It was much more educational that any social studies or government class I was ever in. For those of us who feel like we’ve had so much taken from us (health, financial solvency, dignity, control of our lives) it felt like (for me anyway) that I was taking back a small bit of control. I was at least, not sitting by complacently, letting something happen to me. I was fighting back in some small way. I was able to tell my story to someone who may be in a position to affect change. I was able to be my own advocate. I’m most grateful to IDF for the opportunity to be a lobbyist for a day. ©wtf/rle