Ensure Optimal Care with Dignity


Interstitial Cystitis Association Advocacy Goals

Ensuring optimal care with dignity for all those affected by interstitial cystits (IC) by working to: 

  • Provide universal healthcare.
  • Expand treatment options.  
  • Educate healthcare providers about treatment options.  
  • Help patients navigate the healthcare system.

How You Can Help
Send your IC story to your Congressional representatives and mail a copy of it to ICAmail@ichelp.org.

How the ICA is Working for You

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Supreme Court Health Reform Ruling

As you may have heard, last week the Supreme Court ruled in favor of upholding the Patient Protection and Affordable Care Act (PPACA). Chief Justice Roberts, joined by Justices Ginsburg, Breyer, Sotomayor, and Kagan found the individual mandate to be constitutional based on the congressional powers to tax and spend. This means PPACA will remain largely unchanged, including patient care provisions such as coverage for pre-existing conditions and the elimination of caps on insurance benefits.

The only change following this ruling regards Medicaid. Under PPACA, if states do not implement new requirements included in the law, then the federal government would be able to withhold the full federal portion of Medicaid funding. The Supreme Court ruled, however, that the federal government could only withhold funding associated with the new provisions, and therefore must continue to provide funding to states for its pre-PPACA requirements.

Food and Drug Administration Safety and Innovation Act

On June 26th, the Senate voted 92 to 4 to approve the Food and Drug Administration Safety and Innovation Act. Similar legislation was passed by the House on May 30th, 2012. President Obama is expected to sign this legislation into law in early July.

The bill is considered “must-pass” legislation because it re-authorizes the program that the Food and Drug Administration (FDA) employs to assess and collect user fees for certain drug and biologics license applications and supplements. Under this authority, pharmaceutical companies pay fees for certain new human drug applications, biologics applications, and supplements submitted to the agency for review.

This legislation, which passed months ahead of its re-authorization deadline, establishes new user fee programs for biosimilars and generic drugs. It also reauthorizes programs for brand drugs and medical devices and includes a slew of supply chain, drug shortage, antibiotic development, accelerated approval, conflict of interest, and medical device reforms.

Of interest to the Interstitial Cystitis Association, the bill includes provisions regarding:

  • FDA Review Fees: Renews, through 2017, a program under which drugmakers pay the FDA to review new medications. The legislation also requires generic drugmakers to pay for reviews. The bill renews a similar program for reviews of medical devices.
  • Drug Shortages: Requires drugmakers to notify the government at least six months before discontinuing production of a drug. More than 280 drugs are currently in short supply, creating life-threatening delays for patients with cancer and other serious diseases.
  • Drug Pedigree/ Foreign Inspections: Gives the FDA more leeway to inspect drug factories in foreign countries. FDA has long been required to inspect U.S. manufacturing sites every two years, but most drug ingredients are now made overseas. The bill frees FDA inspectors to go after foreign drug plants.
  • Counterfeit Drugs: Hikes the maximum penalty for drug counterfeiting to $4 million or 20 years in prison.
  • Outside Inspectors: Allows drugmakers to hire non-government inspectors to assess whether factories are meeting U.S. quality standards. These inspections wouldn’t take the place of the FDA’s but could be used to bolster a company’s safety record.
Pain in America: Exploring Challenges to Relief

Recently, the Senate Health, Education, Labor, and Pensions (HELP) Committee met to discuss the Institute of Medicine (IOM) report, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.” The report can be found here: http://www.iom.edu/Reports/2011/Relieving-Pain-in-America-A-Blueprint-for-Transforming-Prevention-Care-Education-Research.aspx. Witnesses at this hearing included:

  • Lawrence A. Tabak, D.D.S., Ph.D., Principal Deputy Director of the National Institutes of Health (NIH);
  • Philip A. Pizzo, M.D., Dean of the Stanford University School of Medicine;
  • John E. Sarno, M.D., Professor of Clinical Rehabilitation Medicine at New York University School of Medicine;
  • William Maixner, D.D.S., Ph.D., Director of the Center for Neurosensory Disorders at the University of North Carolina Chapel Hill; and
  • Christin Veasley, Executive Director of the National Vulvodynia Association.

These witnesses provided input about the state of pain research and challenges faced in treating chronic pain. Ms. Veasley provided a patient perspective on chronic pain with a focus on pain in women, including mentions of interstitial cystitis in her written testimony. Questions were asked about whether medical professionals are more likely to dismiss claims of pain from a woman, the impact of emotions on pain, a systematic bias against reporting pain, doctor shopping, and how policymakers can help moving forward.

More information on this hearing, including a recording and copies of witness testimony, can be found at the following link: http://www.help.senate.gov/hearings/hearing/?id=5906d585-5056-9502-5dd1-1d549d0d88f7.

Letter to Sebelius Re Essential Health Benefits

The Interstitial Cystitis Association (ICA) recently joined 27 organizations in sending a letter to U.S. Secretary of Health and Human Services (HHS) Kathleen Sebelius regarding the Essential Health Benefits (EHB) package currently being developed by HHS. This is a set of benefits that must be covered by certain health insurance policies starting in 2014. The organizations united in support of an Essential EHB package that will assist those living with a chronic disease or disability, and expressed concern that a benefit package that is too narrow may not address the needs of these individuals. The letter included a list of recommendations for how to address the needs of those with a chronic disease or disability, including maintaining access to care and medications.

Preserving Access to Life-Saving Medications Act

On Monday, October 31st, the Food and Drug Administration (FDA) held a stakeholder teleconference to announce an Executive Order by President Obama to reduce drug shortages. The call was led by Margaret Hamburg, M.D., Commissioner of the FDA.

During Dr. Hamburg’s presentation on the Executive Order, she stressed that this latest action was a continuation of the Administration’s efforts to broaden reporting of potential drug shortages and work more effectively with manufacturers to prevent shortages. The Executive Order bolsters federal staffing to carry out these tasks and expedite review of manufacturing sites and suppliers. In addition, the Executive Order directs FDA to work with the Department of Justice to fight price gouging and drug hoarding, and encourages Congress to take additional steps by passing the Preserving Access to Life-Saving Medications Act (S. 296/H.R. 2245).

The issuance of the Executive Order corresponds with the release of two reports on drugs shortages. The first has been produced by FDA and is entitled, “A Review of FDA’s Approach to Medical Product Shortages.” The second has been produced by the Office of the Assistant Secretary for Planning and Evaluation [at HHS] and is entitled, “Economic Analysis of the Causes of Drug Shortages.”

Preserving Access to Life-Saving Medications Act

Given the recent Elmiron shortage, the ICA has been monitoring potential new legislation which could be helpful for IC patients and healthcare providers called the Preserving Access to Life-Saving Medications Act. Senators Amy Klobuchar (D-MN) and Robert Casey (D-PA) introduced this Act (S.296, H.R. 2245). It was later introduced in the House by Rep. Diana DeGette (D-CO-1) and Rep. Tom Rooney (R-FL-16).

These bills would require drug manufacturers to notify the FDA about drug shortages six months in advance or as soon as the manufacturer becomes aware of a problem, if six months is not feasible. The U.S. Food and Drug Administration (FDA) would then post a list on their website to notify the public about shortages and send information to health care providers and patient organizations. The bills would require manufacturers whose drugs are considered vulnerable to shortages to develop a continuity of supply plan. The House version of the bill also proposes a GAO study on drug shortages.

Both bills are currently being further discussed by Congress.

Senator Harry Reid on Interstitial Cystitis

Senator Harry Reid educated colleagues about interstitial cystitis (IC) Tuesday during a discussion about the 20th Anniversary of the NIH Office of Research on Women’s Health (ORWH). Speaking in support of a resolution proposed by Senator Barbara Mikulski to recognize the tremendous role that ORWH plays in advancing scientific research on women’s health, Mr. Reid highlighted IC as an example of a condition that primary affects women.

Healthcare: Obama Speaks with Community Leaders

President Obama spoke by phone with thousands of community leaders, including ICA Executive Director Barbara Gordon, about the rollout of the next wave of healthcare reform benefits. The President continued to be positive that the national healthcare reform will ultimately benefit all consumers, noting "This is something that we'll be able to look back on, just like we do on Medicare and Social Security, as a cornerstone that improves the security of millions of Americans, at the same time lowers costs and gets control of costs, both at the government level, but also for families and businesses." The ICA continues to advocate for optimal care with dignity for all IC patients.

The Latest on Opioid REMS: FDA Wants More Robust Strategy

As reported in “Take Action on Opioids” in the Winter 2010 issue of the ICA Update, for the past several years a panel within the US Food and Drug Administration (FDA) has overseen the Risk Evaluation and Mitigation Strategies (REMS) formulation process for long-acting/extended release opioid drugs.

Secretary Sebelius: Eliminate Caps in Fall 2010

Dear Secretary Sebelius: On behalf of millions of patients with high-cost, chronic, and rare conditions and disorders, we are writing to urge you to implement the elimination of lifetime caps for all plans "new and grandfathered" on September 23, 2010, is the opening sentence of a letter sent by the Raise the Cap Coalition and signed by the ICA and 90 other nonprofit health organizations to Kathleen Sebelius, Secretary, Department of Health and Human Services. As the healthcare reform legislation begins to be implemented, we continue to advocate for all of you with the goal of ensuring optimal care with dignity for all those affected by IC.
Read letter to Secretary Sebelius.

ICA Participates in Webcast with HHS Secretary Sebelius and SBA Karen Mills

U.S. Department of Health and Human Services Secretary Kathleen Sebelius and Small Business Administrator Karen Mills hosted a webchat on March 30, 2010 to discuss the benefits of the new health reform law. Sebelius and Mills highlighted some of the benefits of health reform for the American people and small businesses.

Of note was the question about pre-existing conditions: Starting in September insurance plans must include children with pre-existing condition on the parent’s plans. For adults with pre-existing conditions, there is a goal to set up state pools for high-risk individuals and get folks covered this year. In 2014, the rules about pre-existing conditions will change and a new market of insurance exchanges will be available for all Americans.

Good news also is the intent of the bill to invest in community health clinics. Funding to continue some of the investments in local clinics that were kick-started with stimulus funds is included in the healthcare reform bill. For example, more scholarship dollars are included for health provider training so that there will be more providers to take care of individuals.

The chat is the first in a series of discussions that will explain the impact of the newly passed health reform law. Check out www.healthreform.gov for an archived copy of the webcast, as well as answers to frequently asked questions.

ICA Asks Senators to Eliminate Lifetime Limits on Health Insurance and Vote Yes for HR 4872

The ICA, as a member of the Raise the Cap Coalition, sent a letter to all 100 Senators encouraging them to vote in favor of HR 4872, the Reconciliation Act of 2010. This bill amends the Senate-passed health reform legislation to strengthen the patient protections included in the bill. Under H.R. 4872, lifetime limits would be eliminated in all health insurance plans – both newand existing – six months after enactment. Annual limits would be restricted in new plans until 2014, after which they would be prohibited in all new and in existing group health insurance plans. The reconciliation bill is a significant improvement over the Senate bill, which exempts grandfathered plans from these critical reforms.
Read the letter.

ICA Board Member, Barbara Zarnikow Educates Jesse Jackson, Jr.

Barbara Zarnikow, long-time IC advocate and member of the ICA Board of Directors attended a birthday celebration for Jesse Jackson, Jr. this past Friday, March 19 in Chicago, IL. In addition to wishing Representative Jackson a happy 45th birthday, Zarnikow discussed the special needs of IC patients with him and highlighted the need to continue to raise awareness about IC by sponsoring outreach activities targeting healthcare providers and patients.

ICA Back on Capitol Hill

Last week ICA Executive Director, Barbara Gordon, and ICA Social Marketing Manager, Alison S. Teitelbaum, attended a networking event on Capitol Hill with representatives from a variety of health policy organizations. While there they had the opportunity to speak to Rep. Rosa DeLauro (CT) about IC and reinforce the special needs of people affected by IC.

Neither Rain, nor Snow, nor Sleet, nor Hail

Three representatives of the ICA braved three feet of snow to keep appointments with Congressional offices on Tuesday, February 9, 2010. Barbara Gordon, ICA Executive Director, was joined by Dale Dirks and Ginger Park from the Health and Medicine Counsel of Washington. The ICA met with representatives from the offices of Senators Harry Reid (NV) and Tom Harkin (IA) and Representative Van Hollen (MD) to educate them about the challenges of living with IC and the importance of dedicated IC government funding. The ICA team also delivered copies of emails sent to the ICA from NV, IA and MD patients. The Congressional aids appreciated hearing the experiences of real people living with IC. Our thanks to everyone who took the time to write!

Groups Urge Congress and President Not to Abandon Healthcare

The ICA, as one of the 120 members of the National Health Council, asked President Obama to not abandon the goal of providing universal healthcare. Given the uncertainty surrounding the health care reform process following the Massachusetts special election, this coalition of voluntary health associations reinforced the goal of a health care reform bill that meets the needs of patients with chronic diseases and disabilities.

The National Health Council sent a letter to the White House. It is a request for them to meet with member organizations and discuss the need to continue working towards health care reform. They also resent the letter previously delivered on June 2, 2009, which highlights the need for health care reform that puts patients first.

Read request for meeting.
Read copy of the letter sent to President Obama.

ICA Urges Congress to Prohibit Lifetime and Annual Limits in All Health Plans

The ICA joined 56 other patient advocacy and health professional associations asking Congress to adopt the strongest possible patient protections in the final health reform legislation. Sent on Friday, January 8, 2010, the letter went to Majority Leader Harry Reid and Speaker Nancy Pelosi. Copies were also sent to Senators Tom Harkin, Max Baucus, and Chris Dodd and Congressmen George Miller, Charles Rangel, and Henry Waxman. The group urged these leaders to work towards enacting comprehensive health reform for all Americans that prohibited lifetime and annual limits in all health insurance plans.
Read the Letter 

Court Rules that Medicare Must Change Least Costly Alternative Policy

In 2004, Medicare reimbursement policies changed and coverage of treatments and other healthcare was limited to the least costly alternative, with the exception of prescription drugs. This policy restricted the scope of services some healthcare providers could offer patients. In 2008, the fairness of this policy was questioned and challenged in court. A judge determined that Medicare had overstepped its authority. The court decision stated that Medicare could not require coverage for only the least costly treatment options. Medicare immediately appealed the decision. On December 22, 2009, the US Court of Appeals for DC announced that they were upholding the lower court’s ruling. Medicare lost the appeal. Good news for both patients and healthcare providers—Medicare cannot limit coverage based on this cost policy!

Both the House and Senate Healthcare Reform Bills Offer Promise

As a member of the National Health Council, the ICA educated Congress on the special healthcare issues of people with chronic conditions like IC and the importance of incorporating five key principles into a national healthcare system: (1) Cover everyone, (2) Curb costs responsibly, (3) Abolish exclusions of pre-existing conditions, (4) Eliminate lifetime caps, and (5) Ensure access to long-term and end-of-life care. These principles appear in both the House and Senate health reform bills. Good news; however, a lot of formal, procedural hurdles remain and the devil is definitely in the details of administering a national healthcare system! Next steps: A committee of representatives from the House and Senate negotiates the final version of the bill which gets routed to the House and Senate for final vote. If passed, the healthcare reform bill may go to President Obama for signature just before the State of the Union address in early February. After the President signs the bill, there will be a significant period of time dedicated to figuring out how to fund and implement a national healthcare system. The ICA continues to educate Congress and push hard for a healthcare system that reflects the special needs of people with IC.

Ensuring FDA Commissioner Margaret Hamburg, MD is Aware of the Needs of People with Chronic Conditions

As a member of the National Health Council, the ICA and other nonprofit organizations attended a briefing about the new administration’s top priorities for the US Food and Drug Administration (FDA). One priority of note is a focus on personalized medicine - with the goal of ensuring new treatments get to market more quickly. Commissioner Hamburg is looking at ways to identify patients who are likely to suffer serious adverse reactions to a particular drug before it reaches market. By identifying genetic variants of high risk populations and noting patients who are not good candidates for a particular treatment, the FDA will not have to restrict new medicines for other all patients. Another priority of interest to many people with IC is the goal to work with other government and non-government partners to expand and clarify the information contained in food labels, including information about food additives and processing.

FDA Meeting on Acetaminophen

ICA Social Marketing Manager, Alison Shaffer, MS, MPH, attended the FDA public meeting, regarding the proposed development of class-wide Risk Evaluation and Mitigation Strategies (REMS) for opiod drugs. Opioid drug-makers and the FDA formed a working group to collaborate on this project and were in attendance to report on the status of the proposed REMS. Of particular interest to IC patients and physicians is the proposal of a required physician education and certification class in order to be able to prescribe opioid drugs. In response to this concerns were raised about how the REMS might affect access to drugs for some patients and whether or not the REMS would disproportionately affect underserved populations. This would be particularly concerning if physicians in those areas opted to not become certified to prescribe opioids. Many patients in those areas would then no longer have access to opioid medicines. The working group responded to all concerns and will revise their proposal, to be presented at the next public meeting. View the slides from this meeting.

ICA @ American Academy of Pain Management’s Annual Clinical Meeting

At the American Academy of Pain Management’s annual clinical meeting in Phoenix , providers learned how to integrate the latest traditional and alternative therapy into their practices. We’ll be bringing you some of their best ideas in future issues of the ICA Update. Research, too, was an important part of the meeting, with investigators presented cutting-edge pain research in poster sessions. Three of those studies were particularly important for IC patients in pain, bringing promise of a new treatment and new ways to thwart opioid side effects.

Successful Advocacy Effort—Lifetime Caps Removed from House Healthcare Reform Bill

The House released a revised bill which eliminates lifetime caps in new and existing plans in all markets in 2010! The House got our message that the people we serve with high-cost conditions and diseases can't wait to see the benefits of health reform.  

Helping Dietitians Understand Special Dietary Needs of IC Patients

At a meeting in Denver, dietitians learned about IC!  One dietitian presented a poster session about IC and the ICA was there helping dietitians to understand the special dietary needs of people with IC.

ICA Asks that HR 3200 Eliminate Lifetime Caps

The ICA joined a coalition of patient and scientific groups who asked that the lifetime caps language in the House of Representative’s Healthcare Reform Bill (HR 3200). The letter asked that the language in the bill be modified in one of two ways:

  1. Implement the elimination of lifetime caps immediately (in the next plan year) for all plans. This is similar to how HR 3200 eliminates rescissions in the next plan year for all plans.
  2. Phase-in the elimination of caps following the model of HR 1085—immediately set a minimum of $5 million for two years, then $10 million for two years until 2013, when caps would be eliminated for new plans, and provide inflationary increases to the $10 million until 2018, when caps would be eliminated in existing plans. This is similar to how the House Education and Labor Committee amended HR 3200 to provide an interim fix for pre-existing conditions. 
Improving Outcome in Chronic Disease with Nutrition

At a briefing about healthcare reform and the importance of diet in the treatment and management of chronic disease, speakers discussed the essential role that nutrition plays in overall health and management of many chronic conditions. Researchers presented the findings of a survey of primary care providers about the role of diet in managing chronic conditions. Co-sponsored by the University of Tennessee and the American Dietetic Association (ADA), highlights include:

  • Nearly all study participants (96%) perceived insufficient emphasis on nutrition in the treatment and management of chronic disease.
  • The majority of doctors (83%) noted that lack of direct reimbursement is the main reason they do not offer nutrition counseling to patients with chronic diseases.
  • Most physicians (88%) also noted that medical doctors do not have enough time to talk with patients about diet. The goal of the briefing was to make the case that health insurance needs to provide more robust coverage of nutrition counseling services for chronic conditions.

Patient Advocacy Organizations United on Health Care Reform

The ICA is one of 48 national patient organizations calling on President Obama and members of Congress to enact health care reform legislation that guarantees effective and affordable health and long-term care coverage for all Americans. In a statement issued today, the chief executives of the patient groups specifically urged that reform legislation cover everyone.

OB/GYN Community Receives an IC Education

May 2-6, 2009

The American College of Obstetricians and Gynecologists (ACOG) 57th Annual Clinical Meeting took place in Chicago in early May, and IC education was on the agenda.  The ICA conducted intercept interviews with OB/GYNS about the IC healthcare team, as well as raised awareness about IC by educating attendees one-on-one in the exhibit hall.

Roving Report: ICA Daily Reports from the American Urological Association Meeting

April 25-28, 2009

Some 3 to 6 percent of American women - 3 to 8 million of them - have IC symptoms. That surprising new estimate was the biggest IC story at 2009’s annual meeting of the American Urological Association (AUA), held in Chicago in April. The numbers are much bigger than most previous estimates, which should bring more recognition, research effort, and better treatments to IC.

ICA Represents Patient Voice at AUA IC Clinical Trials Guidelines Committee

Executive Director, Barbara Gordon attended the American Urological Association (AUA) IC Clinical Guidelines Committee meeting. Several members of the ICA Medical Advisory Board are members of the AUA steering committee. We are hopeful that these various guidelines from different countries and professional associations will eventually lead to an international consensus regarding IC guidelines.

Discussions about IC and Overlapping Conditions

April 17-19, 2009

Executive Director Barbara Gordon participated in the IFFGD International Symposium, on Functional Gastrointestinal Disorders and discussions about the potential overlap of IC with IBS and other chronic pain conditions.

ICA Contributes to Incontinence Textbook

With the goal of continuing to educate the healthcare community about IC, Executive Director Barbara Gordon served as a consultant in the development of Incontinence - 4th Edition, released this month and edited by Paul Abrams, MD, Linda Cardozo, MD, Saad Khoury, MD, and Alan Wein, MD (co-chair of the ICA Medical Advisory Board). Dianne Newman, RN, ICA Medical Advisory Board member, chaired the patient education committee, which also included Nancy Norton, Overlapping Conditions Alliance (OCA) member. Developed by an international, multidisciplinary faculty of more than 200 experts, the book includes a short chapter on IC and refers healthcare providers to the ICA for more information. The book is sold exclusively through Amazon.

Advocacy Efforts are Working: National Pain Care Policy Act Update

Our collective voices are making a difference! You may recall the National Pain Care Policy Act (HR 2994) that passed through the US House in 2008 and was up for Senate vote when the 110th Congress ended. In early March 2009, the Act (renamed HR 756) passed through the US House of Representative’s Energy and Commerce Committee and is now being presented to the House and Senate. The National Pain Care Policy Act of 2009 would help the millions in the US who suffer from pain by authorizing a Pain Consortium at the National Institutes of Health (NIH) to:

  • Expand research on causes and treatments for pain
  • Provide comprehensive pain care education and training for healthcare professionals
  • Create a national public awareness campaign on pain management
  • Authorize an Institute of Medicine conference on pain management

More than 100 organizations and thousands of individuals have joined forces in support of this bill to get it signed into law in 2009.

Meeting with CDC Director Regarding Need to Continue with Awareness Efforts

Executive Director Barbara Gordon and Danya International Vice President Mike Greenwell met CDC Director, Division of Adult and Community Health Wayne Giles, MD, MS to review the progress of community efforts to raise awareness about IC among healthcare providers and the public. The need to step up efforts in light of a higher anticipated prevalence of IC among women was discussed.

ICA Meets with Senators Harkin, Kennedy, and Baucus about the Healthcare Needs of IC Patients

The ICA held a number of meetings with senators who serve on the health committees, where much of the discussion about healthcare reform is occurring, including meetings with Senators Harkin (IA), Kennedy (MA), and Baucus (MT). The ICA is also working in partnership with many other patient groups to leverage our voice and ensure that the unique challenges of those who suffer from chronic conditions, particularly chronic pain conditions, are heard. As we continue to engage in these discussions, we encourage you to contact us as well as your members of Congress to share your stories. There is no question that the success of this effort will rely in large part on the voices of the American people and we are committed to working alongside you so that your voice is an effective one.

Educating Nurses About Needs of IC Patients

October 3-6, 2008

The 2008 Annual Conference of the Society of Urologic Nurses and Associates (SUNA) brought 500 nurses, nurse practitioners, and other allied health professionals to Philadelphia. The ICA disseminated information in the exhibit hall and educated more than one hundred healthcare professionals about IC, treatment options, and the latest research.

Raising Awareness with Nurse Practitioners

The ICA educated 1,800 nurse practitioners at two national professional meetings in October: the National Association of Nurse Practitioners in Women's Health (NPWH) and the American College of Nurse Practitioners (ACNP). More and more nurse practitioners are becoming primary providers for people with chronic conditions like IC, so ensuring that they are in-the-know about IC is vitally important. The ICA's goal for these educational efforts with nurse practitioners is increase awareness, speed time to diagnosis, and educate about effective treatment options.