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ICA Advocacy Update

On February 20th, ICA Executive Director Lee Lowery, together with our Washington representative, went to Capitol Hill and met with staff in the offices of 8 members of the House and Senate Appropriations Committees. The goal of these meetings was to remind these funding decision makers of ICA’s legislative priorities as they finalize both the remainder of the FY 2018 budget as well as the FY 2019 budget. These funding priorities include:

  • Please provide $1,000,000 for the IC Education and Awareness Program at the Centers for Disease Control and Prevention’s (CDC). This program promotes public awareness of IC through education for health care providers and the general public. As a diagnosis of exclusion, physicians must be aware of IC in order for patients to receive timely and accurate diagnoses and this program maintains a significant focus on information sharing among stakeholders, with the aim to increase awareness, diagnosis, and proper treatment.
  • Please provide the National Institutes of Health (NIH) with at least $38.1 billion in FY 2019, a $2 billion funding increase. The cause of IC is unknown, there are no definitive diagnostic tools available to clinicians, and there is no cure for IC. The National Institute of Diabetes, and Digestive, and Kidney Diseases (NIDDK) leads the NIH research portfolio with groundbreaking studies like the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network which takes a whole-body approach to studying IC as well as epidemiology research
  • Please continue to include “interstitial cystitis” as conditions eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) for FY 2019. IC is becoming increasingly prevalent among veterans and is associated with post-traumatic stress disorder. Congress has historically included IC in the list of eligible conditions for research under this program and IC researchers compete successfully each year.

Additionally, on behalf of ICA, Lowery urged these staffers to ensure access to responsible pain management as part of any strategy developed to address the opioid crisis.

As part of these visits, ICA drafted and provided these offices with recommended report language that reflects our legislative priorities.