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ICA Signs Letters to Congress and the Administration

In the month of May, the Interstitial Cystitis Association (ICA) has been asked to sign onto 4 letters to Congress and the Administration asking them for emergency funding for the NIDDK, provide bridge funding for stalled research, funding of VA research, the use of step therapy, and the addition of a urologist to the NIDDK strategic planning committee:

  • ICA was asked to sign onto a letter from The Michael J. Fox Foundation for Parkinson’s Research to encourage Congress to provide at least $2 billion in bridge funding to assure the stalled research supported by non-profit organizations, voluntary health associations, science societies, and foundations can resume once researchers return to their labs. Many grant-making non-profits are seeing dramatic drops in revenue due to COVID-19 and are not able to provide additional money to restart already funded projects. The ask of this letter is for funding for already committed research and would not go towards funding new research.
  • The Friends of VA Medical Care and Health Research have drafted a letter to House and Senate Military Construction, VA and Related Agencies Appropriations Subcommittee leaders urging inclusion of at least $50 million for VA research in future COVID-19 supplemental funding bills. This recommendation represents the level of funds Congress rescinded from the VA research program through the FY 2020 funding bill. The letter also reiterates the community ask of $860 million for VA research in FY 2021.
  • The Safe Step Coalition is circulating a letter regarding the use of step therapy by Medicare Advantage (MA) and Medicare Prescription Drug Plan (PDP) sponsors. Under step therapy protocols, a patient may be required to try – and fail – one or more medications before being granted coverage for the drug originally prescribed by their health care provider. Step therapy protocols are often used as a utilization management tool to keep prescription drug spending low. Plans with unclear exemption processes or lengthy response timelines can place great administrative burden on providers by requiring multiple follow-ups with the plan, the beneficiary, and beneficiary’s pharmacy. Across the country, patients are unable to see their doctors in person and physicians are being forced to cut staff, in particular, administrative staff. In a pandemic where there is limited staff, resources, and time, providers and patients simply do not have the bandwidth to go through the challenging process of obtaining exemptions to step therapy protocols. For patients, these protocols can result in delayed treatment, increased disease activity, loss of function, and potentially irreversible disease progression. Americans cannot afford to be put at risk of hospitalization right now, especially when hospitals are low on resources and those with chronic conditions are already at higher risk of contradicting COVID-19.
  • The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is currently soliciting feedback for their strategic plan. After a review of the call for feedback, it came to the attention of several urology professional organizations that there is not a urologist included on the strategic plan feedback review committee. As the NIDDK funds much of the research in benign urologic conditions, the AUA and many subspecialty organizations feel that this oversight needs immediate correction. ICA is supporting a letter addressed to the Chief of Division of Kidney, Urologic and Hematologic Disease (KUH) of the NIDDK, Dr. Griffin Rodgers. The letter highlights the unique perspective a urologist can offer to this review panel and provides recommendations of 6 urologists who will offer exceptional insight.


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