Well, it took me nearly a week, but I finally have a recap of my trip to the Arthritis Foundation’s Advocacy Summit! I’m going to talk about what I did on that trip, who I met with, and what we asked for. Overall, it was an amazing and productive trip.
What I Did – Sunday, March 14 to Tuesday, March 16
I flew down Sunday morning, arriving a little before noon. I spent the day with my family friends, including my “sister,” first just hanging out and then I checked into my hotel, near which we got dinner. After they left, I checked into the summit and got settled for the advocacy event to begin on Monday morning!
Monday began with breakfast and a welcome session. This involved talking about advocacy in general, the statistics on arthritis, the issues we would be focusing on, and how to address them. After lunch, we had the option to choose the different sessions we would be attending. I went to one session on bringing advocacy home to the state legislature and another on Twitter and advocacy (where Anna talked about her Twitter advocacy, especially when she got her insurance company to reverse their decision to not cover her arthritis treatment). The last session of the day that I went to was intermediate advocacy training, which basically was on different ways to respond to our members of Congress turning down our requests.
Tuesday was a day of meetings on Capitol Hill. We – me, Anna, and others from Massachusetts who have arthritis or love people who do – had 5 meetings with offices from 5 Massachusetts legislatures from 11 AM to 3 PM. Luckily, it was just a beautiful day because we went all over Capitol Hill and it would have been miserable if it wasn’t nice.
Who I Met With
I met with staffers from the office of Senator Markey, Senator Warren, Congresswoman Clarke, Congresswoman Tsongas, and Congressman Capuano. The people we met with are tasked with passing on our information to their bosses, so the better we present ourselves and our arguments, the more likely the people we meet with can convince their boss to get on board. (By the way, if you live in Boston, Congressman Capuano is on board with ALL of these things! I’m currently a big fan of how supportive he is of people with arthritis.)
What We Wanted – Policy Information
1. DOD Research Funding for Arthritis Research: The Department of Defense is one of the largest sources of medical funding, and arthritis is a huge part of the armed forces. While 1 in 5 American adults has doctor-diagnosed arthritis, 1 in 3 members of the armed forces do. It’s also the leading cause of discharge from the army; it’s second only to combat injury. So why does arthritis have to compete with a TON of other diseases for research funding? We asked that our members of Congress ask the Department of Defense to allocate $20 million for arthritis research. If that sounds like a lot (obviously it is to the average person), keep in mind that breast cancer research has over $100 million of research. The money we asked for did not take away from any other diseases. How come there’s this disease that affects 20% of American adults, but we don’t know 100% how arthritis develops or a cure. Is it really that unreasonable for us to want to know more about this disease that affects approximately 60 million adults (and 300,00 children)?
2. HR 1859 – Loan Forgiveness for Becoming Pediatric Rheumatologists: Again, there are at least 300,000 children in the United States who have arthritis. But did you know that there are less than 350 pediatric rheumatologists in the entire country? There are 11 states with no pediatric rheumatologists and 7 that have only 1. This bill will create more incentives for medical students to go into pediatric sub-specialties. Right now, there are programs that provide loan forgiveness for doctors who work in rural or under-served areas. But only doctors who go into specialties that require 2 extra years of training are eligible. If they go into a specialty that requires 3 years (like pediatric rheumatology, pediatric nephrology, etc.), they are not eligible. This causes fewer doctors to go into those specialties. As the Arthritis Foundation says:
Due to the scarcity of pediatric rheumatologists, only one-fourth of children with childhood arthritis are currently able to see a pediatric rheumatologist. Even when a child with childhood arthritis is able to see a pediatric rheumatologist, often the indirect costs of travel, lost time from work and school are many multiples of the direct health care costs.
The other 75 percent of childhood arthritis patients currently see either pediatricians, who tend not to be adequately trained to care for children with childhood arthritis, or adult rheumatologists, who are not trained to deal with pediatric issues – whether the stunted bone growth that can result from arthritis and its treatment, or the special requirements of providing treatment to an adolescent.
Passing this bill will correct that problem and help thousands of people across the country. And it also doesn’t cost any extra money.
3. Join the Arthritis Caucus: This is the easiest one of all. We asked for our members of Congress to join the Arthritis Caucus, a group who receive information about arthritis and essentially show their constituents that they support and care about those of them who have arthritis. You can learn more about the caucus here.
What You Can Do – Contact Your Representatives
ASK if they did these things – Email their offices. Tweet them. Contact them in some way and ask if they supported the Department of Defense appropriations for arthritis research. Ask if they have signed on for HR 1859 or (if they are a senator) if they would/will support an equivalent bill in the Senate. Ask if they have joined the Arthritis Caucus.
THANK them if they did – You can do this via email or Twitter. They and their offices need to know that this cause matters, that their constituents care about whether or not they support people with arthritis.
SHARE your story of how you’re affected by arthritis – Share it with them, either a short version via Twitter or a longer version via email to their office. And explain why you’re sharing it. Are you following up on the issues we addressed last week? Are you worried that your representative isn’t listening to people who live with or are affected by arthritis? Were you unable to attend the Advocacy Summit but you still want your voice heard? However you want to phrase it, share your story or your concerns. The more people they hear from about this issue, the better. It’s easy to hear that 20% of people have arthritis and think of that as an abstract number, but if we put a face to the number, it’s harder to ignore.
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