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IC Advocates in Action

On April 27th, ICA Board Chair Michael Greenwell, ICA Executive Director Lee Lowery, and ICA’s Washington representative met with Jaime Varela, a staffer from Senator Marco Rubio’s office and Cady Cooper, a staffer from Senator Hyde-Smith’s office. Both Senators can influence CDC funding as a result of serving on the United States Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies.

The goal of these meetings was to present ICA’s legislative priorities to these funding decision makers. The ICA’s funding and policy priorities include:

FY 2022 Funding Priorities

  • Provide $1,500,000 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.
  • Provide the National Institutes of Health (NIH) with at least $46.1 billion in FY 2022. 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
  • Include “interstitial cystitis” as conditions eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) for FY 2022. 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.

FY 2022 Policy Priorities

Maintain access to chronic pain care medication and protect the patient/doctor relationship with regards to prescriptions. Chronic pain patients depend on important medications to cope with their pain.

The vast majority of IC patients often suffer major and multiple quality of life issues due to this condition. Many IC patients are unable to work full time because pain affects their mobility, sleep, cognition, and mood. These are people that simply want to lead productive lives, and need pain medication to do so. Due to the fact that IC is categorized as a non-cancer pain condition, IC patients already have a difficult time obtaining pain meds. IC doctors do not have time nor the inclination to effectively prescribe or monitor the distribution of the opioid class of medication. They often refer their patients to Pain Management Specialists, many who have never heard of IC, who often refuse to treat them. In addition, antidepressants and benzodiazepines are often used to treat both mood and sleeping disorders for IC patients.

ICA fully supports educating providers with the full spectrum of pain management regarding effective treatment for all patients. We understand the current epidemic with prescription misuse, abuse and overdoses, however we represent patients who rely on responsible use to live a normal life. Pain management is wide reaching and does not only include prescribing health providers but also physical therapists who assist patients working on their pelvic floor to alleviate and manage pain. These practices can lead to a patient moving away from prescription usage while maintaining the same quality and results of care.

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