IC Advocates in Action


Help us document the national movement to ensure optimal care with dignity for all those affected by interstitial cystitis (IC). Let us know if you reach out to Congress and we’ll add you to the IC Advocates in Action map by coloring your state orange!


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Capitol Hill Update
8/15/2014

As Congress adjourns for the August summer recess, there remains much work to finalize the twelve annual appropriations bills that fund federal programs relevant to ICA. Lawmakers will not return until after Labor Day with limited time remaining in this session to make progress before recessing again for the November elections.

The 2015 fiscal year (FY15) begins on October 1st. With some appropriations bills still up in the air, legislators are likely to generate a stop-gap funding measure known as a continuing resolution (CR) which will maintain fiscal year 2014 funding levels until after the elections. The outcome of November elections will likely play a substantial role in deciding whether to finalize spending legislation during the lame-duck session at the end of the year, or leave it for the incoming 114th Congress to deal with in January.

ICA—Voice of the Millions with IC
9/19/2013

In the September 2013 issue of Elle magazine, one of ICA’s favorite experts, Amy Stein, MPT, was interviewed on the benefits of pelvic floor physical therapy for the article Let Who Put What Where (available in print only). We congratulate Stein for bringing awareness to this form of treatment and encourage you to read Amy’s interview with Elle.
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FDA’s Latest Ruling on Opioids Good for Chronic Pain
9/19/2013

The role of opioids in treating chronic pain conditions like interstitial cystitis (IC) has been an increasingly common subject of public discussion over the past few years. The Food and Drug Administration (FDA) and other policymakers have been trying to find a balance between decreasing opioid drug abuse and misuse, while allowing appropriate access to these pain-relieving drugs.
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ICA Back on the Hill
6/14/2013

June 4—ICA Board Co-chairs Eric and Barb Zarnikow, ICA Board Members Neal Thompson and Tony Tyler, ICA Executive Director Lee Claassen, ICA staff, and other IC advocates traveled to Capitol Hill to educate Congress about the needs of the more than 12 million men, woman, and children with IC. The team met with 27 Congressional offices representing 7 states and had three main “asks” for Congress to consider:

  • Invest in the National Institutes of Health (NIH) overall at a level of $32 billion for fiscal year 2014. This will help to advance overall biomedical research as well as IC-dedicated research at NIH aimed at finding better diagnostic tools and treatments for IC.

  • Include IC in the scope of the Department of Defense Peer Review Medical Research Program. This allows researchers to compete for grants in their pursuit to study IC. Through ICA’s advocacy efforts, millions of dollars have been granted to IC researchers to develop treatments and diagnostic tools for IC.

  • Fund the Centers for Disease Control and Prevention (CDC) IC Awareness and Education Program. Through this program, the ICA can continue to spread IC awareness as well as educate IC patients and healthcare providers about IC.

The ICA will continue to advocate on behalf of IC patients everywhere. Want to join us in our advocacy efforts? To get started, check out the ICA advocacy toolkit for everything you need to know on how to become an IC advocate.

Be Your Own Best Advocate
5/23/2013

Join the Interstitial Cystitis Association (ICA) in ensuring optimal care with dignity for all those affected by interstitial cystitis (IC) by becoming your own best advocate. Policy makers want to hear from you! Two recently launched websites can help you make your voice heard.

The Food and Drug Administration (FDA) Patient Network website welcomes the unique perspective of patients, family members, caregivers, and patient advocates directly affected by conditions such as IC to assist with the Agency’s decision-making processes. The site also educates patients and caregivers on the drug and device approval process, clinical trials, investigational drugs, promising treatment options, off-label drugs, and new FDA approvals — all written in plain language.

The State Pain Policy Advocacy Network (SPPAN) website educates patients with up-to-date information about pain management-related policies and provides the tools and resources needed to engage state-level officials on the topic of chronic pain.

Please let us know if you want more information on participating in IC advocacy efforts.

Is Artificially Sweetened Milk Just “Milk”?
3/14/2013

In a petition filed with the FDA, two dairy associations are asking the FDA to change the definition of milk so that chemical sweeteners like sucralose and aspartame can be used as optional ingredients without listing it on the front of the product. Right now, if you buy milk (or any dairy product) that is artificially sweetened, it is clearly stated on the front of the milk carton (this may also be indicated by the terms “low-calorie” or “diet”). The petition wants to drop this requirement on dairy products, which means the only way to know that the milk you buy is artificially sweetened is by reading the ingredients list on the nutrition label.

When news broke last week of this petition, it caused quite a stir on the ICA Facebook page. This is because many people, including some with IC, have issues with artificial sweeteners. If you are one of those people, or just do not agree with this proposal, you can let your voice be heard! The FDA is requesting comments, data, and information about the issues presented in the petition.

Update on FDA’s Patient-Focused Drug Development Initiative
2/14/2013

As you may recall, Interstitial Cystitis Association (ICA) as your patient advocate recently provided public comments at Food and Drug Administration’s (FDA’s) Patient-Focused Drug Development Initiative meeting. Part of the fifth authorization of the Prescription Drug User Fee Act (PDUFA V), the purpose of this five-year initiative is for FDA and drug developers to better understand the patient’s point of view on the severity of their disease and their assessment of treatment options. FDA wants to know the risk patients are willing to take to get benefit from their treatments. This initiative is FDA’s first step in building a narrative with patients for the drug development process.

In summer 2012, FDA nominated 40 disease areas, including IC, as potential candidates for the focus of one of the 20 future public meetings and invited public comment on the preliminary list. If IC is included in the final list of 20, FDA will host a public meeting gathering patient and patient advocates, FDA drug reviewers, and industry to discuss patient perspectives. Here are some updates on this important novel program:

  • FDA is currently in the process of selecting the disease areas that will be the focus of meetings for fiscal years 2013-2015. FDA will ask for more public comments in 2015 to determine the next set of disease areas for fiscal years 2016-2017.
  • FDA is now trying to create the structure and format of these meetings. Those who cannot make it to the meeting in-person will be allowed to give their perspectives online.
  • In the next few months, FDA will begin to announce some of the diseases chosen in a federal registry and on their website.
  • The first meeting is set to be held in May 2013.

FDA representatives say they are finding it challenging to choose only 20 out of the hundreds of diseases presented to them. They have not thrown out the possibility of grouping diseases of similar symptoms into meetings together. However, they want to ensure that the disease areas not too broad. FDA is currently trying to find a balance.

The ICA will keep you posted on the FDA’s final list of 20 disease areas. Until then, you can get involved in IC advocacy at the FDA through their Patient Representative Program and Drug Development Patient Consultant Program.

IC Advocates Meet with Leaders of NIH and Congress
2/7/2013

Last week, ICA advocacy efforts were on full throttle! On January 28th, ICA Executive Director Lee Claassen, ICA Board co-chair Barb Zarnikow, and other IC advocates spent the day at the National Institutes of Health (NIH). The team met with leaders of three key institutes, including Josephine Briggs, MD, Director of the National Center for Complementary and Alternative Medicine (NCCAM), Story Landis, PhD, Director of National Institute of Neurological Disorders and Stroke (NINDS), and Griffin Rodgers, MD, Director, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). At each meeting, the ICA discussed opportunities to expand IC-related research, as well as potential opportunities for collaboration.

The next day, the ICA team went on key Congressional visits in order to help educate Congress about important policy decisions. On the Senate side, the team visited the office of Senator Harry Reid (D-NV) and Dick Durbin (D-IL). To cultivate lawmakers on the House side, the ICA group met with Representative Chris Van Hollen (D-MD), Jim Moran (D-VA), and Brad Schneider (D-IL). The advocates brought the message that biomedical research and public health initiatives are essential to help find answers and meet the special needs of people affected by IC.

Congress continues to grapple with sequestration—8.2% funding cuts to most federal health programs and a 2% cut to some Medicare programs. Furthermore, lawmakers must still complete work on fiscal year 2013 (FY13) appropriations. Please join us in our continued advocacy efforts. Urge your legislators to apply a balanced approach to deficit reduction that does not sacrifice funding for public health, medical research and training. Go to the How to Contact Congress page to learn more. Together, we can make a difference!

Congress Postpones Cuts to IC Research and Awareness Programs
1/10/2013

The 112th Congress concluded with congressional leaders and the White House engaged in marathon negotiations to craft a legislative package to address scheduled tax increases and funding cuts to federal programs collectively known as the “fiscal cliff”. Ultimately, an agreement was reached that dealt with some of the most critical issues while delaying action on other important items. The fiscal cliff agreement, entitled The American Taxpayer Relief Act, passed both the Senate and House with bipartisan votes of 89 to 8 and 257 to 167 respectively. The President has signed the measure into law.

The American Taxpayer Relief Act includes a stop-gap measure that postpones the 8.2% funding cuts to most federal health programs and a 2% cut to some Medicare programs known as “sequestration” until March of 2013. The fiscal cliff package also prevents a 27% cut to payments to physicians for the services they provide to Medicare program beneficiaries by patching the Sustainable Growth Rate reimbursement formula for twelve months. Lower tax rates for individuals making less than $400,000 and couples making less than $450,000 were made permanent, although American paychecks will shrink due to the expiration of the payroll tax holiday that temporarily lowered payroll tax rates from 6.2% to 4.2%.

The new and re-elected lawmakers comprising the 113th Congress were sworn into office on Thursday, January 3rd. Members of the 113th Congress are already working to identify a comprehensive solution to avert or mitigate sequestration before the deep cuts occur in March. Meanwhile, lawmakers are also working on a March deadline to raise the debt ceiling before the U.S. defaults on its credit obligations. Furthermore, lawmakers must still complete work on fiscal year 2013 (FY13) appropriations which are currently operating on a continuing resolution (CR) through March 27th. The CR was enacted because lawmakers had not yet determined the level at which programs will be funded for the remainder of FY13, including IC research at the National Institutes of Health and the Interstitial Cystitis (IC) awareness program at the Centers for Disease Control and Prevention. Considering the timing, it’s possible that these issues could be tied up in a broad legislative package, subjecting IC research and IC awareness funding to negotiations to raise the debt ceiling and mitigate sequestration.

With all the budget activity currently taking place on Capitol Hill, it will be important to engage legislators on the importance of IC research and awareness funding while Congress grapples with the aforementioned issues. Read the ICA Advocacy Toolkit to learn more about becoming an advocate for the IC cause.

Advocacy Efforts Yield IC Funding for Research
10/23/2012

We did it! Your advocacy efforts, ICA advocacy efforts resulted in a $1.6 million research award to fund a potential new bladder drug delivery system for anti-nerve growth factor (NGF) therapy for IC.
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ICA Attends the State Pain Policy Advocacy Network (SPPAN) Meeting
9/13/2012

An Interstitial Cystitis Association (ICA) representative recently attended a State Pain Policy Advocacy Network (SPPAN) meeting. The purpose of SPPAN is to help inform, make connections and build a network of advocates for better pain policy. SPPAN helps coordinate actions, provide resources and build partnerships among pain patient advocates like the ICA.

Some of the items discussed at the meeting included the growing challenges doctors and pharmacies face when prescribing and filling opioid prescriptions for chronic pain patients. Also discussed was the importance of being proactive—not only reactive— to pain medicine control policy.

NIH Workshop on Chronic Overlapping Pain Conditions
8/16/2012

On August 13th and 14th, the National Institute of Dental and Craniofacial Research (NIDCR) and the National Institute of Neurological Disorders and Stroke (NINDS), together with the NIH Pain Consortium, sponsored a workshop on chronic overlapping pain conditions. The workshop was co-chaired by Daniel Clauw, MD, from the University of Michigan and Elizabeth Unger, MD, PhD, from the Centers for Disease Control and Prevention.

The two day meeting discussed topics such as the epidemiology, risk factors, mechanisms and research issues of overlapping conditions. The attendees included world-renown pain researchers and clinicians, as well as patient advocate groups such as the Interstitial Cystitis Association (ICA). At the end of the meeting, the group came to the following set of research recommendations for the NIH:

  • Include pain specialists in the review of research grant applications.
  • Create training programs at universities to develop junior pain researchers.
  • Identify groups of children who may be more likely to develop chronic pain as adults.
  • Better understand why some patients respond to treatments while others do not.
  • Find the common and unique mechanisms of the chronic overlapping pain conditions.

All of these recommendations aim to increase pain research and to better understand these conditions.

The ICA wants to thank YOU! Two weeks ago, we asked the following question to the ICA’s Facebook community,” For those with IC and other overlapping conditions, what is most important to you? Is it a clear diagnosis, better treatment options, or is it knowing the cause?” This became the most popular post ever on the ICA’s Facebook page. We brought your responses to this NIH workshop to ensure your voice was heard. Learn more about IC advocacy today!

ICA Back on Capitol Hill
6/15/2012

Tuesday, June 5, ICA Board Co-chairs Eric and Barb Zarnikow, ICA Board Members Neal Thompson, Claire Buchan, Tony Tyler, and Irma Rodriguez, ICA Executive Director Barbara Gordon, and other IC advocates were on Capitol Hill discussing medical research and public health funding levels in the fiscal year 2013 federal government budget. The ICA team met with 24 Congressional offices representing 9 states and the District of Columbia and had three main “asks” for Congress to consider:

  • Invest in the National Institutes of Health – fund biomedical research and continue to keep a focus on increasing IC-dedicated research at NIH aimed at finding a cause, diagnostic tool, and cure.

  • Include IC in the scope of the Department of Defense Peer Review Medical Research Program – allowing researchers to compete for grants in their pursuit to study IC. Through advocacy efforts, the ICA has successfully added IC to the list in prior years. (Watch Neal Thompson’s June 6 testimony in front of the US Senate Appropriations Committee about the vital need for this funding.)

  • Fund the continuation of the Center for Disease Control and Prevention (CDC) IC Education Program – the only program in the US that pushes education of IC to health care providers and the general public.

The ICA will continue to advocate on behalf of IC patients everywhere. Want to join in advocacy efforts? To get started, check out the advocacy toolkit for everything you need to know on how to become an advocate for IC.

Senator Reid Recognized as IC Champion
6/15/2012

The last Congressional visit of the day on June 5th was with long-time IC champion, Senator Harry Reid of Nevada. The Senator recalled how moved he was by a group of patients who met with him in the mid-1980’s—led by ICA Founder and President Emeritus, Vicki Ratner, MD. This group shared their struggle to get diagnosed and treated for IC. During the meeting, we discussed the progress gained across the last two decades but also the need for expanding IC research in order to find more effective treatments and a cure. On behalf of the IC community, ICA Board of Director Co-chairs Barb and Eric Zarnikow presented the Senator with an award for his years of dedication to IC research and advocacy.

ICA Board Member Testifies at US Senate Hearing
6/15/2012

Neal Thompson, ICA Board of Director Treasurer and long-time IC advocate, testified in front of the US Senate Appropriations Committee last week. Neal shared his IC story as a Virginia reservist and encouraged Congress to include IC in the scope of the Department of Defense Peer Reviewed Medical Research Program, allowing researchers to compete for grants in their pursuit to study IC. Through advocacy efforts, the ICA has successfully added IC to the list in prior years. 

ICA “Springs” into Action on Capitol Hill
3/21/2012

Friday, March 16, Barbara Gordon, ICA Executive Director and other Interstitial Cystitis Association representatives kicked off ICA advocacy efforts for the fiscal year 2013 budget. Our team visited with Congressional offices from around the country including Alabama, Connecticut, Iowa, Maryland, Montana, Texas, Virginia, and Wyoming. It was clear from these visits that Congressional offices want to hear more from the interstitial cystitis community about the challenges of living with this condition. We encouraged continued funding of research at the National Institutes of Health, dedicated dollars to innovative studies through the Department of Defense Peer Review Medical, and public health funding for IC through the Centers for Disease Control and Prevention.

ICA Report on Congressional Budget Hearings
3/21/2012

On Tuesday, March 20, the Director of the National Institutes of Health (NIH), Francis S. Collins, MD, PhD, and the Acting Director of the recently established National Center for Advancing Translational Science (NCATS), Thomas R. Insel, MD, met with Congress about the President’s fiscal year 2013 budget request. Dr. Collins’ testimony featured recent research advancements at NIH and touched on how research is a critical engine for economic development. In addition, both Dr. Collins and Dr. Insel spoke at length about the emerging opportunities NIH will be pursuing following the establishment of NCATS.

Congresswoman DeLauro spoke about the importance of NIH and the value of potentially working to double the agency’s budget once again. She asked Dr. Collins to articulate the impact that the automatic spending reductions pending under sequestration could have on our medical research infrastructure. Dr. Collins explained that if the cuts under sequestration were to go into effect, it would amount to a loss of 7.8% or $2.5 billion in NIH budget authority and result in a loss of 2,300 grants. Congresswoman Lowey stressed that NIH must be provided with at least $32 billion—the increased funding level that the public health community is currently advocating for.

Nearly all members of this Congressional Subcommittee voiced concern that NCATS might deplete resources from other important NIH programs. Dr. Collins explained that nearly all of NCATS’ programs were already established and running at other NIH Institutes and Centers. Therefore, NCATS is more of a structural realignment than a redeploying of critical resources. Dr. Collins pointed out that the number of basic research grants offered has not been and should not be impacted as translational research activities gain momentum. Numerous members expressed concern that NIH might begin acting as a drug development entity. Dr. Collins and Dr. Insel both clarified that the intention of NCATS is not to compete with industry, but to study and improve an outdated translational research paradigm.

Congresswoman DeLauro asked Acting Director Insel to explain how Cures Acceleration Network (CAN) will work and what the initiative’s value is. Dr. Insel stated that 2/3 of all treatments fail clinical trials due to lack of efficacy or issues of human tissue toxicity. He went on to describe new technology that that is being developed to quickly test toxicity on human tissue. In regards to efficacy, he stated that CAN would help identify better targets for treatments. He also discussed how working with industry to repurpose current treatments for other conditions, particularly rare conditions, would be a major focus on CAN.

Strength in Numbers
3/21/2012

This month, the ICA also joined forces with 906 other nonprofit groups to urge Congressional leaders to provide the largest possible FY2013 allocation for funding the Departments of Education, Health and Human Services, and Labor. Leveraging strength in numbers, the voices of the IC community we heard in unison with other patient advocacy groups like The TMJ Association, research societies such as Research!America, and healthcare provider associations including the American Academy of Physician Assistants, American Congress of Obstetricians and Gyncecologists, American Nurses Association, and American Urogynecologic Society.

Advocacy Wins: Dedicated Research Funding
3/15/2012

The ICA advocates each year to have interstitial cystitis included in the Congressionally Directed Medical Research Programs (CDMRP). We are pleased to report that we have been successful for the FY2012 federal budget. And, that funds from the FY2011 federal budget were awarded to an IC research project! Below are some updates about this special biomedical research fund:

  • Dr. Chancellor Gets Funding for IC Pain Grant—congratulations on being awarded a FY11 Technology/Therapeutic Development Award through the Peer Reviewed Medical Research Program. We look forward to learning more about how your tiny bubbles can help you feel good.
  • DoD Announces 2012 Application Opened for IC Grant Applications—looking for funding for an IC research project? Consider applying for a DoD Peer Reviewed Medical Investigator-Initiated Research Award.
  • DoD Peer Reviewed Annual Report Highlights IC as an Area of Funding. Below is the link to the Fiscal Year 2011 (FY11) Annual Report.
Advocacy @ NIH—Laura Santurri
11/22/2011

This past week, IC Patient Advocate Laura Santurri joined ICA Executive Director Barbara Gordon at the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) meeting on Measurement of Urinary Symptoms. The agenda focused on how to develop a better tool for evaluating urinary symptoms common to both in men and women. Laura Santurri, MPH, CPH, served on a patient panel which helped researchers and clinical scientists to better understand the nuances of urological and pain symptoms. Attendees included urologists and other clinicians, patients, researchers, industry, advocacy groups, and leadership from other government agencies. One outcome of the meeting is that NIDDK will be releasing a request for grant proposals asking researchers to generate effective tools to measure differences in symptoms across subgroups of patients (phenotyping) and early, late, transient, and persistent urinary tract symptoms. We’ll keep you posted.

Bonnie Challenges Congress to Fund IC
10/6/2011

After all the work the ICA has managed, moving forward IC research, education and patients resilience, it was with great sadness to read the enote of August 4 from Barbara Gordon. It advised readers of the CDC IC Program which provides about 50% of the ICA's budget. Due to the fiscal 2011 federal budget cuts, the CDC eliminated funding for the IC program and the ICA will not receive grant funding as originally allocated. These are difficult times in addition to our shared disease.

I have contacted my U.S. Congressman asking for his support in future budget decisions regarding IC.

Special thanks to the ICA Board of Directors and Barbara for their continued effort. With hope for another day . . . sooner rather than later.

Bonnie, MO

Barb: Teaching Docs How to Engage Patients to be Advocates
10/4/2011

Last month, ICA Board Co-chair Barb Zarnikow and Executive Director, Barbara Gordon shared the ICA’s strategies for engaging patients at the American Association of Clinical Urologists (AACU) State Society Network 4th Annual State Advocacy in Rosemont, IL. The “Barbara’s” were part of a panel that trained physicians on collaborating with patients on health advocacy activities. The panel provided urologists and industry spokespeople with insights into how physicians can effectively partner with their patients on legislative and regulatory initiatives that impact the practice of medicine and delivery of care. Among the 75 attendees was Sushil S. Lacy, MD, FACS, the president of the American Urological Association, and .the presidents of 22of the state urology associations.

ICA Advocacy Going Strong
8/11/2011

The ICA recently reached out to both the National Institutes of Health (NIH) and the U. S. Food and Drug Administration (FDA).

Dialogue with the NIH included the need to continue dedicated IC programs on all fronts. Barbara Gordon, Interstitial Cystitis Association Executive Director, asked that grants helping researchers fund innovative new solutions, such as new delivery systems for getting pain medicines to the bladder, be funded on hopeful IC products. She also reached out to encourage continuation of funding to medical centers, universities, and other work being done around the country. In challenging budget times, it is essential to ensure some of the research funding given to the NIH via tax dollars from the American people continues to fund research efforts to learn more about the underlying cause of IC and potential new treatments.

In addition, Gordon reached out to the FDA, alerting the heads of the urology committee about the special needs of IC patients for medical devices that are effective in helping to control IC symptoms. She encouraged them to adopt a system of effective review but also one that did not delay the introduction of new products to market that may offer great promise for patients.

The ICA remains committed to ensuring optimal care with dignity for all those affected by IC. We are proud to serve as your advocacy voice and continue to take action on opportunities to educate federal leaders on the special needs of IC patients, providers, and researchers.

Home State Advocacy by Members of the ICA Board
3/24/2011

Barb and Eric Zarnikow, Interstitial Cystitis Association (ICA) Board Co-chairs continued their local advocacy efforts on behalf of interstitial cystitis (IC) patients. The Zarnikows attended an event last Friday, March 18, 2011, in their hometown state of Illinois and spoke with Jesse Jackson, Jr. about the need to maintain IC research and awareness funding. Barb, who is an IC patient, posed with Congress Jackson for a quick photo!

ICA Calls for IOM Pain Committee to Consider Men, Too
3/24/2011

Barbara Gordon, Interstitial Cystitis Association Executive Director submitted testimony to the Institute on Medicine’s Committee on Advancing Pain Research, Care, and Education. Based on attendance at public meetings, the ICA learned that the Committee had a good understanding about the impact of chronic urologic pain in women but were not as well versed about the considerations for men and IC. Gordon shared a story from a male IC patient about his battle with IC pain, “There are a significant number of men who also suffer with IC—many who suffer in silence because of the myth that only women get IC.” The Department of Health and Human Services, National Institutes of Health commissioned the IOM Committee on Advancing Pain Research, Care, and Education to evaluate the current state of the science with respect to pain research, care, and education; and explore approaches to advance the field.

Local District Visits Pack Punch
2/22/2011

Barb and Eric Zarnikow, ICA Board Co-Chairs, attended a “meet and greet” for Representative Bob Dold of Illinois last weekend. The Zarnkow’s met privately with District Director Kelly Folino. They shared Barb’s IC story and explained how critical dedicated NIH and CDC funding is for the millions affected by IC. Barb and Eric also shook hands with Congressman Dold and gave him the elevator version of their advocacy message.

Learn how to schedule district visits with your members of Congress and their local staff.

More Visits on Capitol Hill
2/22/2011

ICA Co-Chair Eric Zarnikow, Executive Director Barbara Gordon, and Washington Representative Ginger Park spent an afternoon with legislative health staffers of Congressional leaders from Illinois. We shared our delight with the newly announced Department of Defense IC research grant, as well as the National Institutes of Health request for proposals on IC research. Eric shared his personal experience as the husband of an IC sufferer. They explained to the group how vital it is to ensure the scientific community remains interested in finding answers about IC. And, we noted that the American Urological Association will very soon be releasing IC treatment guidelines.

Educating the 112th Congress
2/10/2011

This week ICA Board member Neal Thompson and Executive Director Barbara Gordon met with three Congressional offices. The team spoke with legislative staff from the offices of Senator Barbara Mikulski, Representative Frank Wolf, and Majority Leader Eric Cantor. Neal discussed his IC story—bringing home the message that men too have IC—and provided copies of the recent IC and Men ICA Update.

We thanked them for past Congressional efforts to fund IC research and shared the news of the recently awarded Department of Defense grant, as well as the release of the National Institutes of Health research announcement. We also emphasized the need to continue to keep the scientific community interest on IC high with hopes of finding answers. And, with the soon-to-be released American Urological Association IC guidelines, the need to ensure the word gets out to healthcare providers about treatment options.

Calendar Year 2010 Advocacy Reach
2/10/2011

Calendar Year 2010 Advocacy Reach