Advocacy and the Chronic Illness and Disability Partnership

Written by Alice Dartevelle, student in the Health Law and Policy Clinic, Fall 2017.

When my clinical supervisor, Caitlin McCormick-Brault, asked me if I would be interested in attending a meeting of the Chronic Illness and Disability Partnership (CIDP) in Washington D.C. as part of the Federal advocacy project of the clinic, I immediately said yes. Indeed, as an exchange student from France enrolled in the clinic, it seemed like a unique opportunity to observe some ground advocacy work in the United States.

CIDP is a coalition of several national organizations, including the Center for Health Law and Policy Innovation, representing individuals living with diverse chronic illnesses or disabilities. The main goal of CIDP is to assess the current policy issues that might affect and jeopardize access to care for the vulnerable populations that these organizations represent and to work as partners to efficiently respond to those issues.

While the representatives of more than a dozen of those national organizations progressively arrived in the meeting room, the atmosphere was a little tense as everyone kept an eye on the imminent release of President Trump’s executive order about health care insurance. But we soon got into the substance of this meeting, beginning with a roundtable on each participant’s current priorities and concerns regarding access to health care for their specific populations, especially considering the current political setting. This meeting agenda mainly focused on current concerns about Medicaid 1115 and 1332 Waivers, which respectively allow states to submit proposals to modify their Medicaid program and to request a five year exemption from certain ACA provisions. Even if those waivers are not all inherently suspect, they can represent a threat to access to care for people living with chronic conditions and disabilities, especially if they involve adding new barriers such as for example work requirements, drug testing, time limits for enrollment or lock-outs.

The core of the meeting’s discussion was about the best ways to litigate against potentially harmful waivers and to develop CIDP comments on waivers and responses to federal regulations. What struck me was the ability of this coalition to work as a team to find and share the best arguments to fight against potential health care threats, and to keep each other updated on their current issues in order to always try to keep one step ahead.

Getting the chance to participate to this meeting was a truly significant opportunity for me to witness the practical, on-the-ground tactical work done to address the problems that I have studied in class, as well as a chance to see advocacy in action. I truly found it an enriching and valuable experience.