Spur IC Research Funding

Interstitial Cystitis Association Advocacy Goals

To advocate for research designed to find more effective treatments and a cure for interstitial cystitis (IC) by:

  • Expanding the federal research effort.  
  • Spurring basic bladder research.  
  • Funding pilot studies to give innovative thinkers a way to test their research ideas so they can apply for larger NIH grants.

How You Can Help
Write to your Congressional representatives and tell them your story. Also send a copy of it to ICAmail@ichelp.org.

How the ICA is Working for You

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Advocating for Federal Research Funding

The ICA joined 194 other health associations, universities and medical schools, in encouraging Congressional leaders to ensure continued funding for much-needed biomedical research and federal health agencies. In a letter to Dennis Rehberg, Chair and Rosa DeLauro, Ranking Member of the Subcommittee on Labor, Health and Human Services, Education and Related Agencies, the group noted that the proposed funding level for NIH in the proposed 2013 federal budget legislation falls short of what is needed to ensure U.S. global competitiveness in medical research and advance critical scientific discoveries that improve human health.
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Therapeutic Discovery Project

On December 14, 2011, the ICA joined forty three patient and health advocacy groups in sending a letter to the chairmen and ranking members of the Senate Committee on Finance and the House Committee on Ways and Means. This letter was in support in support of the Therapeutic Discovery Project Tax Credit, a credit that assists small biotech companies so that they can fund the development of promising new therapies for the treatment or prevention of chronic diseases. This credit was enacted in 2010, and the groups were writing to support its continuation so that biotech companies can continue to develop treatments for chronic diseases like IC.

ICA Provides Oral Testimony to Congress

Mid-morning on June 22, in a Senate office building in Washington, DC, the voice of IC patients was heard by members of the Senate Defense Appropriations Subcommittee:

“Chairman Inouye, Ranking Member Cochran, and distinguished members of the Defense Subcommittee, thank you for the opportunity to present testimony today on interstitial cystitis commonly known as IC. I am Barbara Zarnikow from Buffalo Grove, IL. I am an IC patient and co-chair of the Interstitial Cystitis Association, a non-profit organization which provides advocacy, research funding, and education for patients living with IC.”

Joining forces with other health advocates on Capitol Hill, Barb educated Senators about how IC impacts military men and women and their families, thus explaining why IC should be included in the peer reviewed medical research program. Barb shared the findings of a study conducted between 1999 and 2002 which found that approximately 1.4% of veterans served by the Veterans Health Administration (VHA) were being treated for IC. The study also showed a 14% increase in patients being treated for IC in VHA during this same period. This echoes findings of prevalence among the general population which shows the incidence is much higher than previously thought.

IC research is currently funded as part of the Department of Defense Peer-Reviewed Medical Research Program. On behalf of IC patients, including the many veterans affected by IC, Barb requested that IC continue to be eligible for the Peer-Reviewed Medical Research Program for fiscal year 2012.

The Bladder Gets Recognition on the Hill

The Society for Women’s Health Research (SWHR) brought together a group of passionate women’s health and urology advocates for a briefing titled “The Bladder Matters: What Women Need to Know” on Thursday, July 15. Janice Arnold, MD, a practicing urologist at Northern Virginia Urology, Robert Star, MD, the Director of the Kidney, Urologic, and Hematologic Diseases Division of NIDDK, and Ellen Exelbert, a patient living with over active bladder, spoke about bladder conditions that disproportionately affect women versus men, such as overactive bladder, urinary incontinence, and IC, as well as about complications that may result from these conditions, such as urinary tract infections, skin irritation, and reduced sexuality. Representatives from many Congressional offices were present at the briefing which will hopefully translate into further recognition of bladder conditions and better understanding about the needs of the IC community among lawmakers. SWHR President Phyllis Greenberger is a member of the ICA Board of Directors. ICA Social Marketing Manager, Alison Teitelbaum, attended the meeting.

ICA Joins Other Groups in Thanking Congress for Taking Big Step to Address Health Disparities

Congressional representatives, legislative staff, and patient advocates gathered this past Tuesday, July 20, to celebrate a historic event—the elevation of the National Center on Minority Health and Health Disparities to an Institute at the National Institutes of Health (NIH). This monumental step means that more biomedical research will now focus on enhancing our understanding about health disparities and offer insights into potential solutions. ICA Social Marketing Manager, Alison Teitelbaum, represented the ICA at this gathering. Several members of Congress were recognized for their help making this newly created Institute a reality including Senators Arlen Specter (PA) and Ben Cardin (MD), Representatives Jesse Jackson, Jr. (IL), Elijah Cummings (MD), and Delegate Donna Christensen, MD (VI). Congressional leaders also praised advocates for their fantastic work thus far and encouraged the community to continue the fight for minority health rights.

Advocacy in Action: A Doctor and a Special Needs Teacher

The ICA continues to educate Congress and other leaders on the need for additional federal research funding and a sustained focus on finding more effective treatments for IC.

  • Last month, Executive Director, Barbara Gordon, and volunteer, Dr. Lee Nyberg, joined Congresswomen Nita Lowey (NY) for an informal breakfast. The message: Please urge NIDDK to continue to fund dedicated IC projects and foster interest about IC among young researchers.

  • Yesterday, Lauren Snyder, a 29-year-old special needs teacher from New Jersey, submitted written testimony to the Congressional Defense Appropriations Subcommittee on IC. Ms. Snyder encouraged dedicated IC funding in the DOD’s Peer-Reviewed Medical Research Program (PRMRP), noting that this program is an indispensable resource for studying emerging areas in IC research, such as prevalence in men, the role of environmental conditions such as diet in IC development and diagnosis, barriers to treatment, and IC awareness within the medical military community. Read Lauren’s story in the ICA Voices of Hope blog.

Keep NIH Research Dollars Flowing

The ICA joined 124 patient groups, scientific and medical societies, research institutions and industry organizations in thanking Representativs David Obey and Todd Tiahrt, as well as Senators Tom Harkin and Thad Cochran, for their support of past biomedical research funding. In a letter delivered June 4, 2010, we encouraged continued support of research funded through the American Recovery and Reinvestment Act of 2009 (Recovery Act) which promises to accelerate the pace of progress in the fight against IC and other serious diseases.
Read the Letter.

Capitol Hill: Visits to 30 Congressional Offices Representing 13 States & DC

An energetic and determined group of IC patients and supporters, ICA staff, and ICA board members marched on Capitol Hill on Thursday, March 25 for the 2010 ICA Capitol Hill Walk, and met with staff members in more than 30 Congressional offices representing 13 states and the District of Columbia. Participants educated staffers about IC and its effects on patients and loved ones, and urged lawmakers to increase dedicated IC research funding at NIH. Check out the “ICA Advocacy Map” to see if we visited lawmakers from your state. And make sure to view a slideshow with snapshots of the 2010 Capitol Hill Walk.

Didn’t make it to Washington last week? Don’t worry; you can still be involved in educating Congress about IC by making a visit to your Congressional representatives in your hometown. We can help you set up the appointment and give you talking points for your visit. If you’re interested in learning more about how to make a hometown visit, send an email to takingaction@ichelp.org.

ICA on Capitol Hill: Spreading the Word & Educating Congress

During the past two weeks, the ICA continued to educate Congress about the needs of the IC community including the effect of IC symptoms on patient quality of life and the importance of continuing dedicated IC federal funding. Social Marketing Manager, Alison S. Teitelbaum, along with Dale Dirks and Ginger Park of the Health and Medicine Counsel of Washington, met with Congressional aides from the offices of Women’s Caucus members: Rep. Nita Lowey (NY), Sen. Barbara Mikulski (MD), Rep. Tammy Baldwin (WI), and Rep. Rose DeLauro (CT). Aides were particularly moved by IC patient stories submitted by their constituents. Visit www.congress.org to find your representatives and share your IC story with them. If you’d like to share it with others, post it on the ICA Facebook page or email it to the ICA at takingaction@ichelp.org.

ICA Urges NCCAM to Designate Funds for IC & CAM Research

On February 5, 2010, the NCCAM Advisory Board held its quarterly meeting in Bethesda, MD. The advisory board outlined three proposed areas of high priority for upcoming research proposals: trials investigating specific natural products; mind/body techniques for encouraging healthy eating, physical activity, and weight maintenance; and CAM therapies for chronic back pain. ICA Social Marketing Manager, Alison Shaffer Teitelbaum, attended the meeting on behalf of the ICA and presented public testimony to the advisory board outlining the relationship between IC and CAM and urged NCCAM to designate CAM funding for IC related research. Read this public testimony here.

Helping NIH Director Frances Collins Understand the Importance of IC Research

At a reception in the Capitol Building, Executive Director Barbara Gordon and Lobbyists Dale Dirks and Ginger Park (from the Health and Medicine Counsel of Washington) joined members of Congress and leaders of health and scientific organizations in welcoming new NIH Director Frances Collins. Collins spoke enthusiastically about the innovative projects NIH was about to fund because of the availability of stimulus dollars. He also noted that one of his challenges is to ensure funding at these levels continues beyond the two-year stimulus period.  Gordon spoke with Collins about NIDDK IC-research efforts, emphasizing how vital it is for NIDDK to continue to fund IC-dedicated projects.

Thanking President Obama for ARRA Research Funds

The ICA joined 330 patient groups, scientific and medical societies, research institutions, and industry organizations in thanking President Obama for his commitment to “restore science to its rightful place” and for the historic short-term support for the National Institutes of Health (NIH) demonstrated through the American Recovery and Reinvestment Act (ARRA).  The ICA supported that bill because it held the promise of more research funding for IC projects.

Monitoring Progress of the Multidisciplinary Approach to Pelvic Pain (MAPP) Research Network

NIDDK leadership provided a progress report to ICA on the MAPP project. This 5-year project is well into the second year of funding and ICA leadership expressed concern that patient recruitment had not yet started. NIDDK study leaders acknowledged delays and noted patient recruitment was set to start in December 2009. Some of the additional ARRA funds are designated for recruitment coordinators to ensure this new goal date is achieved.

ICA Leaders Encourage NIDDK Director to Expand IC Research Portfolio

Executive Director Barbara Gordon and Medical Advisory Board member Daniel Brookoff, MD, PhD, met with NIDDK Director, Griffin Rodgers, MD, and his senior leadership team on Wednesday, November 18. One of the topics they discussed was the status of stimulus funding for IC and IC-related research. NIDDK shared with the ICA that American Recovery and Reinvestment Act (ARRA) funds are supplying additional IC research funds. Those funds, which are primarily being used to supplement existing grants, are boosting the five-year, multisite, Multidisciplinary Approach to Pelvic Pain (MAPP) Research Network projects. The MAPP, which will start recruiting patients in December, received an additional $1.6 million in recovery funds.  Additional ARRA grants are expected to expand our understanding of IC. List of IC and IC-related ARRA awards

Contributing to the National Urology Research Agenda

Executive Director Barbara Gordon served on the Pelvic Pain Working Group Committee participated in the American Urological Association (AUA) Research Summit.   Gordon advocated for the needs of patients with IC during working group meetings and a full-day meeting on September 29, 2009.  Hosted by the AUA and the AUA Foundation, the September meeting brought together 74 leaders in the field to formulate a national urology research agenda.  More to come on publication of a formal document.

ICA Attends Town Hall Meeting with New NIH Director

The newly appointed director of NIH, Francis Collins, MD, PhD, held a town hall meeting for non-profit and health organizations this past Wednesday, September 9, to discuss some of his plans for NIH over the next several years.  He highlighted the need to translate basic scientific discoveries into new treatments, especially for rare diseases, the need to put science to work for the benefit of healthcare reform, and the need to support and encourage innovative research.  You can watch the town hall meeting in its entirety on the NIH website.   Dr. Collins also issued an invitation to all patient organizations and healthcare agencies to submit 1-2 page emails with their suggestions regarding issues that they feel need to be addressed by the NIH over the coming months or years.  You can submit your 1-2 page email to Dr. Collins at NIH-Listens@NIH.gov.  If you’d like to also share your comments with the ICA, please feel free to send them to icamail@ichelp.org.

Senate Appropriations Committee Report Discusses Need for More Dedicated IC Research Funding

ICA advocacy efforts led to a recommendation by the U.S. Senate Committee on Appropriations for the Department of Health and Human Services that called upon the National Institutes of Health to expand their IC-dedicated research efforts. The committee report notes the significant drop in overall funding for interstitial cystitis, with both the end of the IC Clinical Trials Network [ICCRN] and the conclusion of an IC-specific basic science initiative. The committee notes that this drop occurs at a time when a RAND epidemiology study of IC concluded that the prevalence of this disease is close to 4 million Americans, nearly fourfold the original estimates. Therefore, the committee urges the NIDDK to resume the ICCRN as well as a dedicated IC-specific investment in basic science.  Read the language in the budget report for fiscal year ending September 30, 2010.

Senate Encourages CDC to Continue IC Awareness Activities

Awareness about IC has increased significantly during the last several years; however given the significant increase in the prevalence of IC in the US, the Senate Committee on Appropriations for the Departments of Labor, Health and Human Services, and Education, and Related Agencies recommended continued funding for dedicated IC awareness activities.  View the Committee Report.

IC Named in DoD Peer Reviewed Medical Research Program

At the urging of the ICA, the U.S. Senate Committee on Appropriations for the Department of Defense (DoD) named IC as one of the selected areas of study for fiscal year ending September 30, 2010. The DoD Peer Reviewed Medical Research Program dedicates $50,000,000 for medical research projects of clear scientific merit and direct relevance to military health. View the committee report.

ICA Pilot Research Program Success Story: Amino Acid may Hold Key to Diagnostic Marker

This research, funded by a 2007 ICA Pilot Program grant, provides potential new diagnostic markers for IC.  It also enhances our understanding of the chemical processes related to IC and may offer new directions for treatments and prevention strategies.

Success Story: Fishbein Pilot Research Grant Yields $3.7 M NIH Grant

In 2005, Dr. Chelimsky proposed to the Fishbein Family IC Research Foundation to study the Familial Aggregation of Interstitial Cystitis with Other Functional Autonomic Disorders.  NIH awarded him $3.7 million to expand his findings.

ICA and Prostatitis Foundation Ask NIDDK to Increase Research Efforts

The ICA and Prostatitis Foundation followed up on March conversations with NIDDK leaders and asked that NIDDK Director Griffin Rodgers to embrace three priorities:

  • Additional epidemiological research
  • Much more basic science research
  • Biomarker researcher on IC and CP/CPPS.

Read the letter.
Read Dr. Rodger’s response.

ICA and Prostatitis Foundation Urge Expanded Epidemiology Study

During the American Urological Association's (AUA) annual meeting, Executive Director Barbara Gordon and Prostatitis Foundation President Mike Hennenfent met with key NIDDK leaders to discuss the release of the findings of the NIH-funded RAND Interstitial Cystitis Epidemiology (RICE) study, which estimates that IC symptoms affect 3 to 8 million women in the United States.  The ICA and the Prostatitis Foundation urged NIDDK to expand this study to look at prevalence of IC in men and of chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS).

Bringing Our Message to the Hill—ICA Board of Directors Meet with Congressional Offices

In a series of meetings with congressional staffers, the Interstitial Cystitis Association (ICA) urged Congress to increase funds for the Centers for Disease Control and Prevention (CDC) to continue work in partnership with the ICA to raise awareness about IC among healthcare providers and the public and to create tools to help people with IC learn from credible sources about treatment options and self-management strategies.  

ICA staff and board members visited with congressional aides for Virginia, Florida, and Illinois, as well as health policy staff from the offices of Senator Henry Reid (NV) and Representatives Rosa DeLauro (CT) and Nita Lowey (NY).  We asked that legislators promote the need to fund the CDC interstitial cystitis program at $1 million. A funding level of $1 million will allow modest expansion of IC program activities at CDC and continue the critical CDC/ICA cooperative agreement on public and professional awareness on interstitial cystitis.

NIH Launches MAPP Website—ICA Helps MAPP Researchers Explain Goals in Plain Language

As a member of the MAPP Research Network Steering Committee, ICA staff helped MAPP researchers explain in plain language the goals of this $37.5 million per year multicenter and multidisciplinary study funded by NIH. The website offers information about research focus areas including epidemiological studies, phenotyping, neuroimaging and neurobiology, and biomarkers. The site will also provide updates on the investigation of the biologic and behavioral relationships between IC/PBS and CP/CPPS and other frequently related symptom-based conditions including fibromyalgia, irritable bowel syndrome (IBS), and chronic fatigue syndrome (CFS). Visit www.mappnetwork.org.

Monitoring Progress of the RAND Interstitial Cystitis Epidemiology (RICE) Study

The research team of the RAND Interstitial Cystitis Epidemiology (RICE) study briefed ICA leaders on the preliminary findings of this national study, notably a marked increased in the prevalence of IC among women 18 years of age and older in the United States. Results will be presented at the upcoming American Urological Association meeting in Chicago.

ICA Testifies at NIH ORWH Town Meeting

March 4 to 6, 2009
Executive Director Barbara Gordon, Medical Advisory Board member Robert Moldwin, MD, and Support Group Leader Bonnie Hana attended a town hall meeting held by the National Institutes of Health’s Office of Research on Women’s Health (ORWH) on March 4 to 6, 2009, in St. Louis, Missouri.  The meeting was the first in a series of four conferences aimed at collecting public input into the research agenda for the ORWH.  On March 4, Bonnie Hana told her IC story, sharing insights gleaned across more than a decade as an IC support group leader and patient advocate.  During the next two days as members of working groups of key opinion leaders, Dr. Moldwin and Ms. Gordon offered input into potential research priorities for ORWH.

ICA Asks NIDDK Director Griffin Rodgers to Spend ARRA Funds on IC Research

Highlighting preliminary findings of the RAND Corporation's epidemiology study, Executive Director Barbara Gordon asked Dr. Rodgers to dedicate stimulus funds to IC research projects. Given a significant increase in the prevalence rates of IC there is a need to step up dedicated NIDDK IC research efforts. On behalf of the millions of people with IC and the researchers and clinicians striving to improve the lives of these patients, the ICA strongly urges that NIDDK expand IC-dedicated research efforts.

ICA Participates in MAPP Steering Committee Meeting

February 3 and 4, 2009
The planning stages of the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) network are in full swing. The MAPP network, a multi-year project sponsored by the National Institutes of Health (NIH) will be investigating IC, chronic prostatitis, and conditions oftentimes found to co-exist. At the two-day December MAPP Steering Committee meeting, MAPP researchers (including representatives from six discovery sites across the country, a technology and tissue center, and a data coordinating center) discussed a range of issues from how best to enroll patients to the most effective tools for collaboration among the researchers. ICA Medical Advisory Board and Board of Directors member Robert Evans, MD attended the meeting representing the ICA. Having a presence at this meeting allowed us the opportunity to serve as the voice for patients, offering suggestions on everything from study design to patient recruitment to information dissemination about the project at the MAPP meeting.  

Although many details still need to be ironed out, it is clear that the group of researchers engaged in the MAPP network are deeply committed to better understanding IC and CP/CPPS patients and the underlying mechanisms that cause so many to suffer from multiple conditions. The challenge before these researchers is significant, not the least of which is stretching finite resources into the kind of results that patients desperately hold out hope for.