The Voices of IC Free Webcast: August 10th

The Voices of IC will be hosting a free webcast on Tuesday, August 10th at 8 p.m. E.T.  Here is the information for the webcast, as provided by the IC Association:

Gain Insights from Patients, Healthcare Professionals and Advocates Touched by IC

Patients with IC, families, friends and healthcare professionals are invited to participate in The Voices of IC webcast, which will provide a variety of perspectives regarding IC symptoms, diagnosis, lifestyle and social issues and available resources and support.

August 10, 2010
8 p.m. ET
http://www.voicesofic.com

Presented by the Interstitial Cystitis Association (ICA) and Ortho Women’s Health & Urology™

Panel Presenters:

• Expert IC Doctors—Robert Moldwin, MD & Matthew Rosenberg, MD
• Patient Advocates—Linda Salin, Teresa McCoy, & Kevin Noa

Join us for this free educational webcast. Learn from a panel of patients with IC and healthcare professionals* the basics of IC and successful strategies for addressing the challenges faced by adults with IC. Panel discussion will include:

• IC symptoms
• Diagnosis and the diagnostic process
• Working most effectively with physicians
• Lifestyle and social issues facing people with IC
• Resources and support available for patients and their families/friends.

As part of the discussion, participants will have an opportunity to opt-in online to submit questions to panelists. All questions will be reviewed but only a few may be answered. Panelists will not address questions or comments that are off-topic, offensive or promotional, or include mention of any specific products or treatments, whether they are sold by Ortho Women’s Health & Urology™, affiliated companies, or competitors. Product-specific questions should be directed to the companies that sell them.

How to Participate:

To participate in the Webcast log-on to http://www.voicesofic.com.

Follow the prompts on the site to submit questions to panelists. All questions will be reviewed. Unfortunately, we may not be able to answer every question submitted. Panelists will not address questions or comments that are off-topic, offensive or promotional, or include mention of any specific products or treatments, whether they are sold by Ortho Women’s Health & Urology,™ affiliated companies, or competitors. Please direct any product-specific questions to the companies that sell those products.

Interstitial Cystitis & Abuse Not Connected

Thanks to the ICA for this great new information in relation to abuse and IC. I know that over the years there has been a lot of back and forth about whether or not IC and abuse are related. Hopefully this new information will put the debate to rest. There is nothing harder than having a chronic illness and then being told that you are sick because of abuse – especially if you didn’t suffer from any form of abuse. Read on for the full story…

San Francisco—In the past few years, studies showing a correlation between abuse and IC prompted debate and controversy. Today, a new study presented here in a specialty society gathering at the American Urological Association meeting helped end the debate and move IC research to focus on something more important—finding new medical treatments to get you better.

J. Curtis Nickel, MD, presented the study by his team at Queens University in Kingston, Ontario, and other urologists from the United States and Europe at the meeting of the Society for Infection and Inflammation in Urology. They found that there was no appreciable difference in rates of childhood abuse between IC patients and controls. The difference just barely reached statistical significance and did not reach clinical significance. That should help counter some doctors’ assumption that IC is caused by the psychological consequences of abuse and that medical therapy—or different or additional medical therapy—won’t help. As one urologist who attended remarked, we can stop blaming the victim.

This research helped validate the concerns medical writer Penny Allen raised in her story published in Urology Times last year about the issue of abuse in IC patients. (Allen is also the editor of the ICA Update and covers IC research and treatment news for the ICA.) Coincidentally, today, Allen won the 2010 American Urological Association award in the trade journalism category for that very IC story. In her thoughtful analysis of the issue, Allen demonstrated that:

• The rates of abuse in IC patients in published studies didn’t agree.
• Other large studies of people abused in childhood didn’t show they had much more chronic pain later in life than people who weren’t abused.
• Urologists who see IC patients may not have the training to help patients who reveal they have been abused.
• The issue could be diverting much needed focus away from medical treatment and research.

Source

Advice from ICA for Young Patients with Interstitial Cystitis

The “Campaign to End Chronic Pain in Women” Launched on Capitol Hill

Thanks to the CFIDS Association for emailing the following press release and information on the Campaign to End Chronic Pain In Women.

The following press release about the launch of the Campaign to end Chronic Pain in Women was sent to more than 1,000 media outlets across the nation yesterday after an event on Capitol Hill that attracted congressional staff from 35 offices, leaders of women’s organizations and health organizations and reporters. The event was held in cooperation with the Congressional Caucus on Women’s Issues at the Capitol Visitor Center.

After the event, leaders of the CFIDS Association of America (Kim McCleary), the Endometriosis Association (Mary Lou Ballweg and Carol Drury), the TMJ Association (Terrie Cowley and Deanne Cleare) and the National Vulvodynia Association (Christin Veasley) met with staff in the offices of the Senate Majority Leader (Senator Harry Reid), the Speaker of the House (Rep. Nancy Pelosi), chairman of the Senate Health, Education, Labor and Pensions and Appropriations Committees (Sen. Tom Harkin), chairman of the Senate Aging Committee (Sen. Herb Kohl), chairman of the House Energy and Commerce Committee (Rep. Henry Waxman) and chairman of the Health subcommittee of the House Energy and Commerce Committee (Rep. Frank Pallone) as well as other House authorizers and appropriators. They discussed the policy recommendations in the report and gained important feedback about ways in which the campaign goals can be incorporated into new programs being implemented under the Patient Protection and Affordable Health Care Act.

PRESS RELEASE
For Immediate Release
May 19, 2010

The Overlapping Conditions Alliance Launches the “Campaign to End Chronic Pain in Women” on Capitol Hill, to Fight Discrimination Against Women in U.S. Healthcare

Campaign Releases Comprehensive Report & Groundbreaking Campaign Film on Chronic Pain in Women

WASHINGTON D.C. (May 19, 2010) – The Overlapping Conditions Alliance today launched the Campaign to End Chronic Pain in Women, an advocacy campaign fighting to end discrimination and improve care for women suffering from chronic pain. The Campaign aims to improve the quality of women’s lives by raising awareness about chronic pain conditions that disproportionately impact women, as well as the neglect, dismissal and discrimination faced by women living with chronic pain under the current U.S. healthcare system.

A representative from the office of Rep. Tammy Baldwin (D-WI), a leader of the Congressional Caucus for Women’s Issues, provided opening remarks. Congressional staffers, patients, and other Washington D.C. area advocates for women’s health issues were also in attendance.

“While healthcare reform legislation took an important first step to address chronic pain issues, we have a lot of work ahead of us,” said a representative for Caucus Co-Chair Rep. Tammy Baldwin (D-WI). “I look forward to working closely with the Campaign to End Chronic Pain in Women to teach our healthcare system how to confront chronic pain and ensure that no woman suffers needlessly.”

At today’s press conference the Campaign released a groundbreaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination, which offers policy recommendations that could save the government billions of dollars in wasted healthcare costs each year. The hour-long launch event also featured the premiere of the short film, Through the Maze: Women and Pain, and the unveiling of the Campaign website www.endwomenspain.org/.  Following the event, Campaign leaders are scheduled to meet with targeted congressional offices to discuss key report findings and policy recommendations.

“This campaign is about the pattern of neglect, dismissal and discrimination of women’s chronic pain conditions, which serves as the latest example of one of the many gaps in the U.S. healthcare system that deepen human suffering,” said Kim McCleary, President & CEO, CFIDS Association of America.

Chronic Pain in Women: Neglect, Dismissal and Discrimination, which was commissioned by the Campaign, examines the current lack of effective treatments and research funding for chronic pain conditions that predominantly affect women, and how improvements in research, education and access to effective treatments could contribute to improved quality of care and cost control.

“The costs to patients go beyond dollars,” said Terrie Cowley, President, TMJ Association. “Patients can lose their dreams and hopes of careers, of a family, of a quality life and even life itself. This is why it is so important that cost effective investments in research be made, and that a campaign is created to educate healthcare professionals and promote public awareness of these conditions.”

According to the Campaign report, in 2009 the National Institutes of Health invested only $65 million in research into the six chronic pain conditions highlighted in the report – chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular (TMJ) disorders and vulvodynia – just two-tenths of one percent of its total budget. That is an average of just $1.33 for every affected woman and represents less than one-tenth of one percent of the annual estimated cost of these conditions.

“Women in our society are oftentimes raised with the notion that it’s normal to suffer,” said Mary Lou Ballweg, President & Executive Director, Endometriosis Association. “Education of healthcare professionals and the general public is essential during this time of reform, to ensure that women in this country no longer have to suffer in silence.

The Campaign includes volunteer leaders from four non-profit patient advocacy organizations, including The CFIDS Association of America, The Endometriosis Association, The National Vulvodynia Association, and The TMJ Association.

“Chronic pain doesn’t just affect the sufferer – it affects each and every one of us and every part of our society,” said Christin Veasley, Associate Director, National Vulvodynia Association. “By appropriately investing in research, educating medical professionals and the public at large, we have a real opportunity to change the lives of millions of American women, their families, our economy, and society as a whole.”

About The Campaign to End Chronic Pain in Women:
The Campaign to End Chronic Pain in Women is an advocacy campaign fighting to end discrimination and improve care for women suffering from chronic pain. The Campaign is made up of volunteer leaders from the CFIDS Association of America, Endometriosis Association, National Vulvodynia Association, and The TMJ Association. Pfizer helped to offset the costs of campaign materials. For more information, visit www.endwomenspain.org/.

New Formulation For Oxycontin Approved By FDA

The FDA has approved a new forumlation for controlled-released Oxycontin, a powerful pain medication that is typically prescribed severe, chronic pain.   The goal of this new Oxycontin formula is to help discourage abuse and overuse of the drug.  This could be really good news for chronic pain sufferers who have doctors who are afraid to prescribe the drug because of the previous threat of misuse.  This new formula should put doctors at ease when prescribing Oxycontin and more patients who are legitimately suffering from pain should be able to get the drug.  

The new Oxycontin formulation will be created in a way that the medication cannot be crushed for snorting or liquified for shooting up.  If the new formula gets wet or someone tries to dissolve it, the drug will become gummy.  Because there is just a reformulation of the drug, the timetable for a potential generic version hasn’t changed.   More good news.

The Interstitial Cystitis Association was involved in the stakeholder teleconference FDA held on Wednesday, April 7 to announce approval of the new formulation. The ICA reports:

During that teleconference, FDA’s Bob Rappaport, MD, explained that the agency will require the company to do a postmarketing study to collect data on how much the new formulation reduces abuse and misuse of this opioid. In addition, he said, FDA is requiring a “Risk Evaluation and Management Strategy” (REMS). This REMS will be a straightforward one that applies to this drug only: a medication guide will be issued to patients, and prescribers will be required to be educated about the appropriate use of opioid analgesics in the treatment of pain.

FDA didn’t take this opportunity to issue a REMS for all opioids. That’s still open for comment from legitimate pain patients like you who need these medications. Please continue to tell FDA how important your access to these medicines is and that you don’t need more barriers to receiving them.

IC Healthcare Team Event: Finding Better Relief

I received the following email from the IC Association and I wanted to pass the information along for this event.  If you can’t attend in person, you can sign up for the webcast.

WHAT:
In-person Event in Nashville: An opportunity for patients, caregivers, and healthcare providers to meet face-to-face with leaders in the field to learn more about IC. This event offers attendees a chance to hear respected physicians discuss their IC treatment philosophies, as well as meet other people affected by IC.

Live Webcast: If you are unable to attend the event in person but would like to tune in and participate, the ICA will be airing a live webcast of the in-person event. Online participants will have the opportunity to pose questions to the presenters and provide feedback during the event.

FEATURED SPEAKERS:
Barry Jarnigan, MD & Ragi Doggweiler, MD

WHEN:
Saturday, June 5, 2010
9:30AM – 11:30AM
Registration opens at 9:15AM

WHERE:
Hutton Hotel, Vista Ballrooms B & D
1808 West End Avenue
Nashville, TN 37203

REGISTRATION FEES:
ICA Member $15/ Non-member: $25**
Note: This fee applies to both the in-person event in Nashville and the webcast.

If you are an ICA member, be sure to log in to register at the member’s only rate. If you are not currently an ICA member, you can become a member now to register at the member’s only price. Once you have joined you will receive an email with instructions on how to sign up for this event at the member price.

• Click here to register for the In-Person Patient Forum in Nashville.
• Click here to register for the Live Webcast.

PARKING:
Self parking is available for a $7 charge and valet parking for non-hotel guests is available for a charge of $10 per day.

LODGING:
A room block has been reserved for participants at the Hutton Hotel, 1808 West End Avenue, Nashville, TN 37203 at $149.00 per night plus fees/tax single or double. This discount rate is available until May 4, 2010. Participants are required to book their own rooms. Call and mention the Saint Thomas Health Services Pelvic Pain conference to reserve your room at the discounted rate or reserve a room online. Discounted rooms are limited and based on availability.

**The ICA is unable to provide refunds for registration fees for this event for any reason. Your registration can, however, be transferred to another person in the event that you are unable to attend. Please contact icamail@ichelp.org for a registration transfer.

The IC Network Introduces “The Bladder Academy”

The IC Network is starting a series of classes and workshops called “The Bladder Academy”.   The purpose of these classes and workshops is to help IC patients learn more about the disease, treatment options, self-help strategies and other pertinent information.  The monthly web classes, with phone-in options, are a great way to learn all you need to know about Interstitial Cystitis from the comfort of your home.  With these online lectures and classes, IC patients will be able to learn more about the illness from Interstitial Cystitis experts.  The courses will be held during the daytime hours, evenings and weekends so there will be time slots to accomodate every schedule. 

Each class will be taught by a veteran instructor and will be an hour long.  There will also be Q & A time at the end of each class. No computer required though you will need a computer and web connection to see the video chat. Phone in participation will also be available. Below is a list of the currently scheduled classes coming up.  The classes do cost between $10 and $15, depending on the course.  If you would like to participate in one or more of these classes,  just click on the date and time links below and it will take you directly to the IC Network where you can register.

Newly Diagnosed Orientation

• Tuesday March 23 – 6PM PST (9PM EST) – Evening Course
• Saturday April 3 – 10AM PST (1PM EST) – Weekend Course

An In depth Review of IC Treatments

• Monday, April 5 – 6PM PST (9PM EST) – Evening Course
• Saturday April 24 – 10AM PST 9 (1PM EST) – Weekend Course

Managing IC Flares

• Wednesday, March 24 – 6PM PST (9PM EST) – Evening Course
• Saturday April 17 – 10AM PST 9 (1PM EST) – Weekend Course

Introduction to the IC Diet

• Monday, April 29 – 4PM PST (7PM EST) – Late Afternoon Course
• Monday April 29 – 6PM PST (9PM EST) – Evening Course

Meal Ideas & Planning

• Wednesday April 7 – 6PM PST (9PM EST)

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