ANNUAL REPORT
2020
• • • FROM THE EXECUTIVE DIRECTOR • • •
ANNUAL REPORT
Throughout 2020, the Interstitial Cystitis Association continued its mission of advocacy, research, and education to improve the lives of the more than 12 million Americans suffering from IC.
The Interstitial Cystitis Association (ICA) began with a call for action nearly four decades ago when ICA founder Vicki Ratner, MD developed an intolerably painful and debilitating bladder condition while in medical school and was told by 14 physicians that the issue was all in her head. Knowing this was not true, Dr. Ratner conducted her own research and properly diagnosed herself as having interstitial cystitis (IC). Now thanks in large part to the efforts of our founding IC heroes, the ICA has gained recognition from the medical community that IC is a chronic disease prevalent among men, women, and children and people of all ages and races.
More than 35 years later, we continue our commitment to improving the lives of the more than 12 million Americans suffering from Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS); ensuring their voices are heard by lawmakers, the medical community, and researchers; and supporting better diagnosis, treatment, and research towards a cure.
This year has challenged us all. We did not allow a pandemic to stop us and knew the IC/BPS community would generously give, inspire, and support each other this year more than ever.
ICA rapidly shifted how we provided our programs and services in 2020. We were able to transform our annual in-person advocacy day on Capitol Hill into a virtual event that allowed the entire IC/
BPS community to participate, and we re-envisioned the Walk for an IC Cure as a virtual event, with in-person walks to be announced for 2021. We created virtual programming, including a Virtual Pelvic Pain Symposium, and launched a new support community on Facebook.
Because of the generosity of our supporters, ICA is on a strong footing as we continue to advance our goals of better understanding, better treatment, and better outreach. We still have many battles ahead of us.
There remain many people who need our help. As ICA’s Executive Director, I, along with the Board of Directors, ICA staff, and the IC community as a whole thank you for your continued support over the past four decades—and in the years to come. With your help, we can continue to change lives, and ultimately conquer IC.
Lee K. Lowery, MPA, CAE ICA Executive Director
Give Hope, Change Lives
Your support helps ICA provide advocacy, research funding, and education to ensure optimal dignity for people affected by IC/BPS. To learn more, visit
www.ichelp.org/donate.
2020
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 $44.7 billion in FY 2021. 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.
• Continue to include “interstitial cystitis”
as conditions eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) for FY 2021. 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.
2020 IC 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. 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
• • • ADVOCACY • • • ICA advocates for the needs of the 12 million Americans with interstitial cystitis, as well as those of the healthcare providers, researchers, and others who work to improve the lives of IC patients. We also empower people with IC to advocate for themselves and to ensure we maintain momentum and awareness of the condition and those who suffer from it.
ICA ANNUAL ADVOCACY DAY GOES VIRTUAL
The Interstitial Cystitis Association (ICA) transformed its annual Advocacy Day from an in-person event on Capitol Hill to a virtual event that took place on April 21, 2020.
At a time when the majority of the country was under stay-at-home orders, hundreds of IC/BPS patients, family members, and friends ensured their voices were heard from the comfort of their own homes, helping educate members of Congress on IC/BPS patient issues and ensuring that lawmakers continue to support our legislative needs.
Prior to the virtual Advocacy Day, ICA hosted a virtual “prep session” webinar on Monday, April 13th, during which ICA’s legislative representative, Philip Goglas II of Health and Medicine Counsel of Washington, provided tips and tools needed for effective virtual advocacy. The video of the webinar can be viewed at https://bit.ly/ICA-3lgkHHl.
Advocating for IC/BPS isn’t a once-yearly event. The tools you need to email your lawmakers are available on the ICA website, including a template with which to tell your personal story. If you contact your Members of Congress, we want to know! Please email us at [email protected]. We will be here to help you make your voice heard!
2020 IC FUNDING PRIORITIES
• Provide $1,100,000 for the IC Education and Awareness Program at the Centers for Disease Control and Preventions (CDC).
ADVOCACY BEGINS AT HOME
Learn more about how you can help at ichelp.org/advocacy-for-those-affected-by- interstitial-cystitis.
the opioid class of medication. They often refer their patients to Pain Management Specialists, many who have never heard of IC and 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.
ICA SENDS LETTERS TO CONGRESS, ADMINISTRATION REGARDING COVID-19
ICA joined other advocacy groups and patient organizations to urge that Congress and the administration provide much needed supplies and safety measures to continue helping those on the front lines fighting the COVID-19 pandemic; bolster research and support education and awareness activities for the chronic illness communities; and support nonprofit charitable assistance programs. ICA also participated in letters encouraging incorporation of the provisions of the Safe Step Act (H.R. 2279/S/2546) into any subsequent COVID-19 response legislation and to state governors, insurance commissioners, Medicaid directors, and executive directors of boards of pharmacy regarding COVID-19 regulatory changes for the patient community.
• • • RESEARCH • • •
ICA PARTNER IN RESEARCH STUDY TO DEVELOP FIRST-EVER DEFINITIVE
DIAGNOSTIC TEST FOR PEOPLE LIVING WITH IC Drs. Laura Lamb and
Michael Chancellor at Beaumont Health System in Michigan were awarded a major grant from the United States Department of
Defense (DoD) to develop a simple at-home urine test to determine if an individual has interstitial cystitis. ICA served as a partner in engaging the IC/BPS community nationwide to contribute samples to the survey, details of which are available at www.icstudy.org. This test, called the Interstitial Cystitis Risk Score (IC-RS), measures components of the urine. It uses a machine learning algorithm, similar to an internet search engine like Google, to determine if a person has IC. If successful, this could become the first FDA-approved test for interstitial cystitis.
“What is significant about this research is that this is the first advanced medical technology study to use machine learning to develop a new diagnostic test for IC,” says Lamb, the study’s principal investigator. “Also special is that crowdsourcing by social media will be utilized to develop a medical diagnostic test.” Medical experts from both Baylor College of Medicine in Houston and Einstein College of Medicine in New York are also participating.
“It is a great honor for Laura and I to be working on this project because not only will it engage the ICA, but also patients with IC, their families and friends from across the entire USA, and especially women and men in our military and veterans,” Chancellor adds.
Following a pivot in Spring 2020 during which Beaumont researchers applied their work on the IC diagnostic project to developing a better COVID-19 diagnostic test, researchers began collecting samples from the IC/BPS community in Fall 2020.
ICA SURVEY YIELDS INSIGHTS INTO LIFE WITH IC/BPS
ICA surveyed more than 1,500 IC/BPS patients and their friends, family, and healthcare providers about their lives, symptom triggers, and treatments. While the results aren’t statistically predictive
since the survey was voluntary, they provide valuable insight into what many patients are facing on their IC/BPS journey. Among the findings:
• The highest ranked symptom was pelvic pain, but most patients reported all three IC/BPS hallmarks—pain, frequency, and urgency.
• Roughly three-quarters of survey respondents ranked diet (76 percent) and stress (75 percent) as their top symptom triggers, by far the most frequently cited responses, suggesting the importance of addressing both in managing IC symptoms.
• Nearly all survey respondents said they had tried an IC-friendly diet (84 percent) to manage their symptoms, while nearly two- thirds (65 percent) have used acid reducers for their food. Importantly, nearly as many respondents (62 percent) said that the IC-friendly diet has helped with symptoms, at least double that of the next most helpful treatments cited by respondents.
• Nearly half of respondents have lived with IC symptoms for 10 years or less.
• The presence of comorbidities has long been understood as a challenge for managing IC/BPS, and survey respondents reported a wide range of other chronic conditions, led by allergies and sensitivities (54 percent) and irritable bowel syndrome (41 percent), followed by pelvic floor dysfunction (30 percent), fibromyalgia (21 percent), vulvodynia (19 percent), endometriosis (14 percent), chronic fatigue syndrome (14 percent), and others.
• While the greatest number of survey respondents were between 60 and 69, participating IC patients ranged in age from 13 to more than 90 years old
View the full results at https://bit.ly/ICA-3vrxYl6. ICA COMMUNICATES INFORMATION ON RESEARCH INVOLVING ELMIRON AND VISION CHANGES
The Interstitial Cystitis Association (ICA) monitored and made the IC community aware of recent studies appearing in peer-reviewed medical journals that show an association between the use of pentosan polysulfate sodium (Elmiron) and retinal abnormalities (called “pigmentary maculopathy”).
The relatively rare patient who develops this condition may suffer vision changes or loss. However, other research is showing different results. It is important to note that the U.S. Food and Drug Administration (FDA) has not taken any action or issued any alerts regarding the toxicity of the medication, but has added Elmiron to its watch list of drugs or drug classes for which there is a potential sign of serious risk or new safety information. The drug’s manufacturer has also added language about pigmentary maculopathy to Elmiron’s prescribing information and other documentation (see https://bit.
ly/3jXBoFr).
As more data regarding this issue is accrued and analyzed, the ICA recommends that patients taking Elmiron discuss these reports with their healthcare providers. Continuance or discontinuance of the medication based upon risks versus benefits can be discussed.
ICA supports groundbreaking research projects, advocates for government funding dedicated to IC research,
and helps keep the research focused on patients by serving on research steering committees and panels.
ICA MEDICAL ADVISORY BOARD ISSUES GUIDANCE ON IC/BPS AND COVID-19
In Spring 2020, the ICA Medical Advisory Board informed the IC community that there are no data to suggest that IC/BPS patients are immunosuppressed, concluding that having IC/BPS alone does not make you more susceptible to the virus. However, patients taking any immunosuppressants (such as cyclosporine) to control IC/BPS symptoms could be placed at higher risk for any infection, including COVID-19. Many IC patients have other medical conditions or may be receiving medications for other medical conditions that could put you at higher risk, and the board recommended that patients consult their physicians for further details.
ICA LAUNCHES NEW IC/BPS FACEBOOK SUPPORT GROUP
ICA launched a new “private” Facebook support group for the IC/
BPS community. Moderated by ICA, the group is a place to connect with others living with IC/BPS and their loved ones, especially during the isolation of the COVID-19 era. Go to www.facebook.
com/groups/ICBPSGroup/ or search Facebook for Interstitial Cystitis Association IC/BPS Support Group.
ICA WALK FOR A CURE GOES VIRTUAL
Facing the challenges of COVID-19, ICA hosted its first Virtual Walk for an IC Cure event in September. During the week of Sept.
12-19, almost 600 participants from across the country, including IC patients, their families and friends, healthcare providers, and volunteers joined the event, cumulatively walking 9,893,825 steps and raising over $50,000 for more IC awareness, better treatments, and an eventual cure for IC.
Sponsors included Desert Harvest – Platinum Sponsor; Prelief – Platinum Sponsor; and West Coast Mint – Bronze Sponsor. Special thanks to the Toth Family and SPX Corporation for their matching grant. PelvicSanity, Desert Harvest, West Coast Mint, Aura Health, IC Relief, Dr.
Heather Jeffcoat, and Dr. Jessica Drummond also donated IC/BPS related awards for our tenacious winners.
Hosted by ICA Board Member Dr. Nicole Cozean, author of The IC Solution, participants received access to new information, self-care tips, IC flare busting tricks, handouts, and videos, which can be viewed at https://bit.ly/ICA-2Q5uG6O.
In November 2019, ICA held a Walk for an IC Cure in Cartersville, Georgia, hosted by Dr. Jeffrey Proctor. Together, more than 75 passionate patients, husbands, wives, partners, children, neighbors, coworkers, sponsors, and healthcare providers participated. Sponsors included Irma Rodriguez and Fred Fernandez, Georgia Urology, Prelief, and Medtronic.
To learn more about starting an IC Walk in your community, visit www.ichelp.org/walk-for-an-ic-cure/.
• • • EDUCATION • • •
ICA arms patients, healthcare providers, caregivers, researchers, and the general public with objective and up-to-date information about IC.
ICA HOSTS VIRTUAL PELVIC PAIN SYMPOSIUM On September 26, ICA patients were able to learn about the newest research and clinical progress for pelvic pain during a free webinar hosted by Northwell Health and moderated by ICA Board and Medical Advisory Board member Robert Moldwin, MD, FACS.
Nationally and internationally known experts in the field of pelvic pain from the Pelvic Pain Treatment Center at the Arthur Smith Institute for Urology presented on a wide range of topics about common conditions that are the cause of pain and new approaches to pain management. View recorded videos of the symposium at https://
bit.ly/ICASymposium.
7918 Jones Branch Drive, Suite 300 McLean, VA 22102
www.ichelp.org
FINANCIAL STATEMENT Making the Most of Limited Resources
In 2020, the Interstitial Cystitis Association (ICA) continued its mission as a steward for resources for programs and services that directly support education,
advocacy, and research for IC. A summary of financial statements incorporated in the annual audit report issued by Rogers & Company for the fiscal year ended September 30, 2020 will be available in the “About Us”
section of the ICA section of the ICA website, www.ichelp.org.
PROVIDING VIRTUAL SUPPORT WHEN IT WAS NEEDED MOST
Early in the pandemic, the ICA team took critical action steps to mitigate the impact of COVID-19, shifting to fully remote operations in order to continue serving the IC/BPS community.
ICA closely monitored updates from local and national public health officials and posted updates on its Facebook and Twitter pages.
ICA also offers many free courses online 24/7 at www.ichelp.
org. Its online support community (www.inspire.com/groups/
interstitial-cystitis-association/) surpassed 34,000 users, and to provide additional opportunities for support for those who may be at home, ICA launched a new Facebook group at www.facebook.
com/groups/ICBPSGroup/.
Patients can continue to reach ICA through email at icamail@ichelp.
org, on our “Ask an IC Question” page (www.ichelp.org/ask-an- ic-question/), or by phone at (703) 442-2070. Staff or volunteers will return your message as soon as possible.
• • • IMPACT AND FINANCIALS • • •
2020 ICA
BOARD OF DIRECTORS
Michael C. Greenwell, Board Chair Richard C. Lufkin, Treasurer Irma Rodriguez, Past Board Chair
Natasha Boswell
Nicole Cozean, PT, DPT, WCS, CSCS Jane Elsten, MD
Michael Hsieh, MD, PhD Abigail Jenkins Paula Maxwell
Robert M. Moldwin, MD, FACS Michael (Jay) Moss, Jr.
Laura Santurri, PhD, MPH, CPH Tony J. Tyler
Dan Vickery, MBA, PhD Eric Zarnikow