Healthcare Advocacy in D.C.

Well, I went to The Hill.
The Crohn’s and Colitis Foundation asked if I would, so I said, “OF COURSE!!!”

My professors were kind enough to let me get finals out of the way early so I could go make noise on Capitol Hill for a couple of bills:

1. The Medical Nutrition Equity Act H.R. 2501: Currently, health insurance in America will cover medical foods as long as they’re inserted through a nasogastric (NG) feeding tube, even if there’s no clinical indication for insertion of an NG tube. We need these medical foods covered orally! Medical foods are NOT groceries…that seems to be the consensus on The Hill, and I had to explain from the position as a future registered dietitian:
– Medical foods are broken down into single amino acids, digestible monosaccharides (single sugar components) and lipids, so the body can absorb them easier. These are especially important in patients who are malnourished.
-Medical foods are important, especially in pediatric patients, to prevent or prolong the need for more expensive/potent medications.

2. The Safe Step Act H.R. 2279: There are laws in 25 states currently that protect patients, but not in Oklahoma where I live. In Oklahoma and states like it in this respect, insurance requires patients to first fail a medication before they can then be prescribed a medication that would be helpful. However, there’s no burden of responsibility on the insurance companies to review the appeals process submitted by the doctor stating that the patient is failing a drug. This could mean up to 6 months time would pass before a patient finally receives permission from the insurance company to try a new drug. I experienced this firsthand in Oklahoma last year:
– My drug of 6 years, remicade, began failing me because my body developed antibodies to it since my doctor repeatedly forgot to write the order for it, delaying the time between infusions of remicade.
-I “failed” the drug, meaning I began to experience uncontrollable symptoms. I was told that it would take “several months” before insurance would approve another drug. I was missing work and knew I didn’t have “several months”. Literally, I was scared that I would die. I was violently losing blood 30 times daily, losing weight, and I couldn’t stay hydrated. I was hospitalized twice last year because of issues associated with failing remicade.
-I moved my care to Texas, which is a 6 hour round-trip ordeal for me to receive treatment. Because Texas has laws in place that protect patients, I was able to get my infusiong within 72 hours of finding my new GI doctor in Dallas. When insurance acknowledged that I was “failing” remicade, I was able to get on a new treatment within 48 hours of the doctor submitting an appeal to insurance.

The Safe Step Act would require insurance to make timely decisions so patients could receive the treatment they need as prescribed by their doctor, potentially avoiding missed time from work, loss of employment, surgery, hospitalizations, or even death (in extreme cases). The Safe Step Act saves healthcare dollars and lives!

A local GI doctor (George) and I spoke with the staffers for Senator Inhofe and Congresswoman Horn from Oklahoma, and then we met up with friends from New York and Kansas (Sarah and Tyler) to speak with Congresswoman Davids and Senator Roberts from Kansas (side note: Kansans are truly some of the kindest people I have ever met). Our goal was to get co-sponsors for these bills so we can make them into laws, bettering the lives of IBD patients and beyond. Most, but not all, of the legislators were receptive and even supportive! Contrary to what we see/hear in the media, Republicans and Democrats CAN agree on some things, and since these bills are bi-partisan, that made this whole, “please support these bills” requests much easier.

I saw Congresswoman Alexandria Ocasio-Cortez from New York from afar- SO exciting to see women MY AGE in Congress! I also saw Senator Ted Cruz from Texas about 127 times.

Between our meetings, we grabbed lunch underground at a cafeteria and waltzed over to the U.S. Botanical Gardens for some peace and quiet from the hustle and bustle. Shout out to Sarah from NY for knowing D.C. like the back of her hand, because I felt like we had a tour-guide, and this was a gem:

Since the 20 days that have passed since meeting with legislators, we have gained 22 co-sponsors for The Safe Step act. I sent another follow-up email to some staffers today, and we are actively seeking more support.

If you’re interested in these bills above and want to make noise where you are, email your representative and ask them to co-sponsor the above bills. Tell your story, and let them know how these bills would help you. These bills are currently both on the House of Representatives side, but we will have Senate call to action soon!

I’m learning that advocacy is so, so important. If you’re affected poorly by the systems in place, we can make a change…but we need to tell our stories. Lawmakers need to know how we can change our world, and advocacy is the perfect space to not only let people in positions of power see how we need change, but also to offer a solution through these bi-partisan bills.

Keep moving forward!

Not pictured: coffee shops, crab cakes with my friend Hope, riding bikes through a thunder storm, touristy monuments, and a cocktail reception with new friends

P.S. If YOU want to support medical research directly, please consider donating to my fundraiser here!


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Sister Trip 2017 Recap

Hope you had a lovely weekend 🙂

In an attempt to not completely procrastinate, this blog post is a Sister Trip recap from last weekend: Northern Virginia Wine Country and Washington, D.C.

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Every year since 2015 we take a “Sister Trip”, just the two of us (woo-hoo three trips and counting!). In 2015 we went to Napa Valley, California while I ran the Napa to Sonoma Wine Country Half. Then last year we went to Charleston, South Carolina- our favorite trip to date, Lindsay’s choice. And last week we took this year’s trip, also situated around another Destination Race: Virginia Wine Country Half-Marathon (my choice again-see a theme?). It’s a fun excuse to get together in a fun place since we don’t live near each other any more, and it’s always a good time.

We began our United Flight, Basic Economy level with ONE single personal item (not even a carry-on) due to our limited space of conveniently being assigned the last seats on the plan, so we fit EVERYTHING into a backpack each. We miraculously made it back home with our souvenirs, too.  I honestly have never packed so light in my life…and I’m a little embarrassed by that.

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We picked up our car in the passenger pick-up line that we rented from Turo- it’s an app that allows you to rent cars owned by locals at their own discretion. Such a fun, easy experience! And it was slightly cheaper than renting a car. Then we drove to downtown D.C. and ate crab cakes and fruit at Old Ebbitt Grill at the bar- so good!

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With satisfied appetites and happy hearts we walked to the White House and, to our surprise, we were able to get right up close to the lawn without security barricades. The crowds weren’t bad either!

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Next was the beautiful Jefferson Memorial. I excitedly called Zack to tell him how thrilled I was to see one of my favorite historical quotes engraved in one of the giant walls, “We hold these truths to be self-evident: that all men are created equal…” He was quick to remind me about Jefferson’s owning slaves/having an affair with slave Sally Hemings, which basically served as a grave reminder not to romanticize people…which is hard not to do when you’re standing inside a giant monument erected in their honor. But I digress.

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Next was patriotic popsicles, because we are children. Then we drove off to the race expo in Leesburg to pick up my bib number and race shirt.

Finally, we made it to our AirBnB which was more enchanted than I could’ve dreamed up. Meet our greeters, Brandy and Whiskey:

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And our cozy cabin

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Complete with entertainment

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As an IBD patient, I appreciated this ^.

We ended the night early after carbo-loading at a local Italian restaurant. The next morning was an early one for race day, but I wasn’t tired after sleeping nine hours.

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^Morning view near the starting line at Doukenie Winery. Lindsay dropped me off near here. I loved the views!

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The race was overcast and in the upper-seventies, perfect weather!

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Girl YAS- LOOK at that ponytail action

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Best part of the day.

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^Best part of the day 2.0

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Followed by dinner at Finn Thai and [another] early bedtime.

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The next day we went into D.C. for some quality American tourism…

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…and paid our respects to Texas veterans at the WWII memorial…

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…and visited Honest Abe (worth the walk and climbing the steps and the heat).

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We chewed on lemon Italian Ice as we sat in the grass of the National Lawn listening to peaceful protesters, then headed to find lunch.

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^ Hamilton’s! I LOVED this place. My turkey burger was amazing, and so were Lindsay’s California rolls and shrimp tempura.

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Next we went to the Holocaust Museum, a place I’ve wanted to visit since reading “Night” by Elie Wiesel in junior high school. This place shook me to my core, and I was struck by how subtle, gradual-changing political agendas gave rise to hatred. The world allowed this hatred to perpetuate by its lack of opposition and ever-increasing fear of peoples’ differences in the place of tolerance and compassion. It was so gradual and so real. I will never be the same after this museum. Never stop speaking up for people around you who are persecuted. Support others, because they need you.

We ended the day on a light-hearted note at the Smithsonian Air and Space Museum, which was really TOO COOL. HOW can they fit so many planes INDOORS?

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That night at our AirBnB we drank local wines and ate snacks on our hosts’ patio of their house until the wee hours of the morning- I felt like we were old friends, and I loved their company.

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And that about wraps up our journey. We had a turbulent flight back to Texas where we promptly stuffed our faces with Mexican food and guac upon our arrival.

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Then Jaxon and I headed back to Oklahoma for another work week- he’s a great little traveler. Honestly, such a FUN weekend, and we can’t wait to return to Norther Virginia- we couldn’t get over how GREEN all the scenery was this time of year. We are so thankful to have experienced Virginia’s Wine Country AND D.C. What a cool little time.

Hope your Monday is better than most!

-Stacey


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