Sunday, March 11, 2012

2012 DDNC

I've already written a detailed post on my trip to D.C, including automated telephone calls from the airline that seemed to be telling me that they installed a time machine on the airplane. If you are a friend of mine on Facebook you've probably already seen it. If not here you go: Just Getting There

Metro at D.C's National Airport
What I didn't include were photos so I tacked a few on the blog to show my adventure on the Metro and how nice and calm the hotel lobby was at that time of day. I'll admit it, I'm only showing the lobby so I could show off one of my favorite pairs of socks. After a long morning of traveling Amy Foore, Kim Arment and I spent most of the night in the hotel room wide awake. I had hit the bed by 8pm but was ready to take on the world at 2am.

Waiting for Kim and Amy
 Saturday morning was spent finding a drug store that was open and within walking distance, chatting, and basically relaxing in preparation for the meetings and congressional visits to come. At noon Kim and I headed to the lobby to kick of G-PACT's meet and greet. Hannah H. and her mother Victoria were the first to arrive, followed by Ashley E. and Sarah L. was a great to meet other DTP patients, share stories, goof around, and take part in photo ops (even if some of the photographers were sneaky....)
G-PACT gathering on Saturday 3/3/12

 Mike Smith, G-PACT's vice president, and his family arrived at the hotel while we were meeting in the lobby. His little girl made everyone smile, and it only took us a few moments to decide she was the cutest 6 month old in the world. While we were planning to go sightseeing, Mike and his family were the only ones energetic enough to head to the museums. Kim and I headed back to the hotel room after a few hours, while the members of the Gutsy Teen Lounge were still chatting away downstairs.

You may be wondering where Amy was during all of this. She didn't completely miss out, the girls had gone up to meet her, but she did stay in the hotel room nursing a cold. Which brings us to why we didn't head to the museums I had on my To Visit list. I fell victim to a cold virus (can't blame Amy for it, having been in an airport and held captive in a plane who knows where I picked it up). Just like every other patient dealing with a host of chronic illnesses, getting a virus really puts a damper on things.

In the hotel room checking emails...
and of course Facebook!

Sunday morning I found an urgent care clinic that was open to get a once over by a human doctor. Being a veterinary student I gave myself a once over, but humans and dogs aren't exactly the same. That and I didn't have my stethoscope. Kim and I rode the metro and it took us right to the doorstep of the clinic. There was a Walgreen's next door, which I couldn't help but think was strategically placed. After filling a script for antibiotics and cough medicine with codeine we headed back to the hotel.

Once we got back we an hour or so to gear up for the DDNC meetings. The meetings consisted of  three panels. The first panel was made up of government officials from the National Institute of Health (NIH), the Food and Drug Administration (FDA), and if I recall correctly, the Center for Disease Control (CDC). The second panel consisted of patient organizations, including the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N). I stuck around long enough to hear the president of ASPEN discuss drug shortages, and then headed back to the hotel. I decided to rest up a bit in hopes of making it through the congressional visits on Monday.

Congressional Offices
Monday we all met at the Phoenix Park Hotel where we had our meeting the day before, gathered in our teams, and got a brief overview of our goals for the congressional visits. The top things were funding for the NIH, specifically the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and legislation that helps increase a patient's access to quality medical care.

My team, Team 3, was made up of four people. A pharmacist, a gastroenterologist, a colorectal cancer patient, and me. It was a good mixture of professional policies and patient stories. We met with congressional aids from Iowa, Minnesota, and Ohio. For the most part the aids were interested in what we had to say. Except for one, from my state, who was texting while we were talking to him. I'll try to post more on how to be an effective advocate at a later date, so don't think I'm skimming over what went on to avoid the subject. I think it is better suited as a stand alone post, so we can have a great resource for patients going to DDNC or doing their own advocacy elsewhere.

G-PACT got back together in the hotel room around 5pm and spent the night doing what people do, watching TV and enjoying our last day together. We got up early on Tuesday to get things packed. I flew out around 11am, after braving the rush hour on the Metro (never, never, never again).  Kim and Amy drove back to Pennsylvania around the same time. It has taken me a week to write about the experience, and I'm still reflecting on how things went. Watch for upcoming posts on advocacy, recaps from other DDNC attendees and feel free to ask any question you want!

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