IFFGD's 2023 Advocacy Event

A FREE two-day event

2023 IFFGD Advocacy Event

IFFGD's Advocacy Event Details

Sunday, April 16 & Monday, April 17, 2023

Location: Courtyard by the Marriott Washington DC/ U.S Capitol

Program Overview: View our tentative program agenda below

For the millions of Americans living with the debilitating and sometimes life-threatening symptoms of a functional gastrointestinal or motility disorder (FGIMD), the fight for awareness, research into safe and effective treatments, and cures are ongoing.

But Members of Congress can help

IFFGD’s 2023 Education and Advocacy Event is a free event to educate the community about access to healthcare and treatment and how to best advocate for yourself in the medical field. This event will be held on April 16-17, 2023. Due to COVID-19 protocols, the space will be limited to 50 guests. If you are unable to attend in-person, please email Hayley McCorkle at hnmccorkle@iffgd.org.

The educational program is designed to help attendees learn more about how to receive the health care they need and deserve. 

Can’t attend but still want to get involved?

If you cannot attend this year’s in-person event you will also be able to email IFFGD your personal stories which will be hand delivered by IFFGD staff to Congressional Representatives on the Hill on April 17th. If you are interested in sharing your story, click the button below to get started. We are asking that all stories be submitted no later than Monday, April 10, 2023.

Program Overview

Opening Sessions: Legislation designed to improve a patients access to care

Dr. Conway
Dr. Braden Conway

The Safe Step Act

During this session, we will discuss step therapy and how the Safe Step Act can help patients access the best medications for their condition.

Dr.Shah
Dr. Samir Shah

HELP Copays Act

During this session, we will discuss the Help Ensure Lower CoPays Act (HELP Copays Act) and how copay accumulators can be harmful to patients. 

Dr. Stephen James
Stephen James

Update on NIDDK

During this session, learn about the NIDDK’s funding for the FY 2023 to help support those living with gastrointestinal illnesses.

Jeffrey
Jeffrey Anders
COCCI Board of Directors

COCCI Advocacy Priorities

 During this discussion, COCCI’s Government Strategist, Jeffrey Anders, will speak on the legislative priorities of their community and how we can help advocate for black, indigenous people of color to increase opportunities that increase their quality of life while living with Crohn’s and chronic illnesses.  

Afternoon Breakout Sessions

The rest of the day will be divided into interactive breakout sessions

Kelsey
Kelsey McCorkle

Megen Chey
Megen Chey
IFFGD Program Assistant

Breakout Session 1: Contacting your legislators via Social Media and email

During this interactive session Megen and Hayley will teach you how to create social media posts and emails that you can send directly to your representatives.  These are great ways to reach out and advocate for yourselves, family members, and friends.

For this session you will need:

Intestinal failure John Mahalchak
John R. Mahalchak
Patient Advocate

Melodie
Melodie Blackwell
Founder and President of COCCI

Breakout Session 2: Sharing your personal story with your legislators

In this interactive session you will learn about how to connect your personal story to current legislation. Please bring a personal story that is typed, printed, or hand-written and walk out of this session with the knowledge you need to share it with your representatives.

For this session you will need:

Keith
Keith McCorkle

Jozmond2
Jozmond Black

Breakout Session 3: Learning about your representatives

This interactive session will teach you how to find information about your representatives such as who they are and what policies they support. 

For this session you will need:

Ceciel 3
Ceciel Rooker
President of IFFGD
Erin Slater 1 e1624051973981
Erin Slater
Registered Dietitian and Patient Advocate

Breakout Session 4: Hill Day Practice

In this breakout session, each group will conduct a mock hill day visit which will allow your group to practice having conversations with your legislators.  Each group will be given a customizable script to practice with.

For this session you will not need anything

The Safe Step Act

The Safe Step Act was created to improve step therapy protocols and ensure patients are able to safely and efficiently access the appropriate, best treatment for them.

Step therapy is a tool used by health plans that controls spending on patient medications. While step therapy can be important for containing the costs of prescription drugs, it can have negative impacts on patients.  This can include delayed access to the most effective treatment, severe side effects, and irreversible disease progression. 

Insurance companies may require a patient to try certain medications before gaining access to the drug originally prescribed by their physician.  This protocol is known as “step therapy.” Step therapy protocols may ignore a patient’s unique circumstances and medical history. This can lead to patients using medications that do not address their medical issue, or they may experience dangerous side effects. 

The Safe Step Act will require insurance companies to implement a clear and transparent process for a patient or physician to request an exception to the step therapy protocol. 

**Taken from S. 464/H.R. 2163, SAFE STEP ACT OF 2021**

Learn more about the Safe Step Act Here

HELP Copays Act

Help Ensure Lower Copays Act requires health plans to count copay assistance towards cost-sharing requirements, the HELP Copays Act brings imperative relief to vulnerable patients by guaranteeing that all payments—no matter the source—count towards their out-of-pocket costs.

What are Co-Pay Accumulator Programs:

  • These programs are a tool used by health plans to limit their own expenses by preventing copay assistance programs from counting towards a patients deductible. 

How are co-pay accumulators harmful for patients?

  • Co-pay accumulator programs typically don’t cover costs for the entire year, leaving the patient to pay out of pocket once their card has run out, after finding out that they are no where near having their deductible met. 
  • Many patients rely on this copay assistance to afford their medications.  Without them, they may need to stop receiving their life-saving medication. 
  • Insurance companies are essentially getting paid twice.  Once from the patient’s pocket, and again from the assistance program. 

Hotel and Travel

Hotel Information:

  • Courtyard by Marriott Washington, DC/U.S. Capitol
  • Hotel Address: Courtyard by Marriott Washington, DC/U.S. Capitol, 1325 2nd Street NE, Washington, DC 20002

Arrival/Departure

Please plan to arrive Saturday April 15 or early morning Sunday April 16.  Sunday’s program will begin approximately at 9:00 A.M.

Meetings on Monday, April 17, are expected to run until approximately 5:00 PM EST. To make sure that you can attend all of the meetings you are scheduled for, please follow these departure guidelines:

  • If you are flying out of Reagan National Airport (DCA) on Monday, April 17 , please plan to book your flight no earlier than 6:30 PM EST. 
  • If you are flying out of Washington Dulles International Airport (IAD) or Baltimore-Washington International Airport (BWI), please plan to book your flight no earlier than 7:30 PM EST.

Other Hotels in the Area

  • Comfort Inn Downtown DC/Convention Center (0.5 mi)
  • Renaissance Washington, DC Downtown Hotel (0.6 mi)
  • District Hotel (0.6 mi)
  • Sofitel Lafayette Square Washington, DC (1 mi)

Ground Transportation

Taxis are widely available. Other methods of transportation include ride-sharing apps (Uber/Lyft) and the Metro. The closest Metro stop to the hotel is Mt Vernon Sq/7th St-Convention Center (0.3 mi).  

The International Foundation for Gastrointestinal Disorders gratefully acknowledges Pfizer and Ardelyx  for their generous support of the 2023 Education and Advocacy Event on the Hill
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IFFGD is a nonprofit education and research organization. Our mission is to inform, assist, and support people affected by gastrointestinal disorders.

Our original content is authored specifically for IFFGD readers, in response to your questions and concerns.

If you found this article helpful, please consider supporting IFFGD with a small tax-deductible donation.

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