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!


Advertisements

5 Major Life Updates! Spoilers: Admitted to grad school & the hospital

Hi, Friends!

You may have noticed a few cosmetic changes on the blog (or not)- I’m working on creating a cohesive brand, and I’m an all-over-the-place kind of person, so please bear with me!

A few major things have happened since we last chatted. I’m going to start sharing blog posts more consistently now that I feel that I’m in the right headspace/ schedule to do so, and I’m pumped about it. For now, I’m going to catch you up on my life stuff.

  1. Grad school acceptance. Ya girl is finally done with all the biochemistry and organic chemistry and gonna be a registered dietitian nutritionist…soon! This has been many years of behind-the-scenes work while holding full-time jobs, and I couldn’t be more thankful to be here! Classes start in August.

IMG_8113-2

2. Another trip around the sun

IMG_0240-2

And I am so grateful! My sister came to town for celebrations, and she brought my dog niece Sophie (pictured above)!

IMG_0199-2

We went to brunch at Kitchen No. 324 here in Oklahoma City, and it didn’t disappoint.

IMG_0200-2
I had the avocado toast, and it was so good that I felt it deserved a spotlight in this life update.
IMG_0210-2
In 8 years of dating and 1.5 years of marriage, this is the FIRST summer that Zack and I are TOGETHER in the same house. WOW.

3. Hospitalization
IMG_0491-2
3 days of nonstop vomiting after an infusion resulted in a few days worth of electrolytes in the hospital. Not pictured: emergency colonoscopy (glamorous), which resulted in a Crohn’s? diagnosis, as opposed to ulcerative colitis. Not entirely sure though. Good news: Scope showed that I am CLOSE to remission again; there’s hope! On another positive note, this hospital stay was the most consecutive time that Zack and I had spent together probably since our honeymoon, which was nice despite the circumstances. Life is crazy.

4. Consistent movement: Since my hospitalization, I laced up and ran a 5K just because it felt good. Not pictured: yoga and barre a few times weekly, which keep me grounded during the crazy work weeks in the trauma O.R.

IMG_0604-2

I looked back at a ton of my old posts this weekend, thankful for the progress that I have made in a couple of years. I harped, “Doing is better than dreaming” and “Actions speak louder than words” and “You may not feel like moving, but keep moving forward” and A LOT of times, these words were written for myself as I sat paralyzed by anxiety from my couch. Since January, I haven’t stopped running/yoga/barre/moving, including walking the dog a few times weekly- even when I haven’t felt like it, just because I’d rather be out in the world uncomfortable (and often anxious) than sitting at home wishing I was out moving and shaking. I’m getting more comfortable with being uncomfortable, and I’m living a full life that resembles the life I actually picture having for myself. If you’re battling anxiety, know that you WILL learn to tame that dragon; just give it time. I’m no therapist, but doing new things, and doing things that make me uncomfortable have empowered me.

5. Crohn’s and Colitis Advocacy. 
Still fighting! I’m meeting soon with a state rep about the allocation of federal funding in an attempt to offer a patient’s perspective of “Hi, this sucks and we need to do better because we can.” With the help of the Crohn’s and Colitis Foundation, I’ll also be leading a much-needed adult IBD support group here in OKC. We are still working through the logistics, but we are looking for things to kick off in September.

Thanks for hanging in there with me, friends!
I’m so stoked to have the support that I have!!! I am creating useful, good things to leave you feeling less hangry and more amazeballs, and I can’t wait to share it all…very soon.

Keep moving forward. 
Really, no really. 🙂

Stacey