Interstitial Cystitis Network Newsletter

ICN E-Newsletter - Late March / Early April 2017

Sponsored by: Allergan (LiNKA) - Javacid - Beaumont Urology - Desert Harvest Aloe - Cysto Renew - Prelief - Acid Zap - CystaQ

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Feature Story

The Economic Toll of Elmiron

67% of Patients Struggle to Pay For the Only Oral Drug Approved for IC/BPS by the US FDA

When the patent expired on Elmiron® in January 2010, the IC patient community expected the rapid release of a more affordable generic medication. Swati Spentose, a company located in India, has produced a generic pentosan polysulfate (Brand Name: Comfora®) currently available in a variety of countries, including Canada, but NOT in the USA. Why? They have yet to complete the rigorous FDA review required of all proposed generic medications. Unfortunately, that leaves patients in America prisoner to the high cost of this brand name medication. If not covered by insurance, some patients have been forced to pay more than $1500 per prescription for a medication which, ten years ago, cost $200 or less. The high economic toll of Elmiron® is undeniable. Read the article

 

The Doctor Of The Year 2016

Dr Robert Evans (Wake Forest Baptist Health - North Carolina)

We are pleased to announce that Dr. Robert Evans has, for a second year in a row, been voted the 2016 IC Doctor of the Year during our annual IC Awareness Month campaign. Hundreds of patients nominated and voted for doctors who they believe had treated them with kindness, respect and with excellent knowledge about IC. Dr. Evans patients raved about his medical care. Here are some of the nomination essays submitted on his behalf. Read it now!

 

Physical Therapist of The Year 2016 -

Sarah Conley PT, DPT, WCS (Conway Regional Health System - Arkansas)

Sarah Conley PT, DPT & WCS has been awarded the 2016 Physical Therapist of the Year. Votes were collected throughout Fall 2016 as part of the international IC Awareness Month campaign. We asked patients to nominate both physical therapists and doctors who treated them with compassion, kindness and professionalism. Hundreds of votes were then tabulated during the first part of 2017. Sarah’s first nomination speaks volumes about her care and treatment of patients struggling with pelvic pain. Read it now!

 

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The Latest Research

Have You Been Denied Pain Treatment? - A New ICN Survey

The pain of interstitial cystitis has been rated equivalent to cancer pain using the McGill pain scale in various research studies. Yet, despite what can be very intense pain, many patients have been struggling to receive pain treatment or denied pain medication. With the 2016 release of the CDC Guidelines on the use of opiate medications, IC patients who have used pain medication successfully and moderately are now finding their medical care providers reluctant to renew prescriptions.

In the past six months, we’ve had dozens of patients call our office seeking help. In several cases, their doctors had retired or relocated and they were unable to find a physician to take over their pain care. Others have reported urologists who had become too afraid to prescribe pain medication over the fear of a DEA investigation. Tragically, some have used moderate levels of opiates only to have their next prescription denied, forcing them into severe withdrawals. With drug rehabilitation services costing well over $10,000, these patients are forced to undergo withdrawals at home without medical supervision.

In this new ICN survey, we ask some important questions. Have you used pain medication successfully? Have you been suddenly denied your pain medication? Were you able to find another care provider to help you? How have you been treated? Have you found any OTC pain medications helpful? Have you tried medical marijuana?

Please help us gather this important data and TAKE THE PAIN SURVEY. No personal identifying information will be captured. We just ask for your age and country at the end of the survey.

Read it now!

 

Calling All IC & Health Care Activists - Are you concerned that you will lose your health care services?

Regardless of our often diverse political affiliations, there is one topic that unites us all – the state of health care in the USA. From rising costs to reduced access, IC patients are at the front line of an increasingly unsympathetic medical system. Consider recent calls to the ICN office.

  • Anne* survives on a small pension. After the first of the year (2017), she was told that Elmiron would no longer be covered by her health insurance and that she would be required to pay $700 a month in out of pocket expenses. It had cost her just $40 before. (Another patient was quoted $2500 for that same medication).
  • After his doctor retired, Lee* was unable to find a physician who would renew his pain medication despite years of moderate, successful use.
  • Sheila* has struggled with severe recurring Hunner’s lesions. She lost her health insurance and, after her savings ran out, was placed on Medicaid. Unfortunately, only two urologists within 200 miles of her home would accept Medicaid and neither worked with IC/BPS. She was denied any of the three AUA suggested treatments for lesions (cauterization, laser therapy or steroid injection).
  • When Mary* selected her health insurance, she chose a very low premium with a high deductible. Unfortunately, when she finally needed to use her insurance, she didn’t have the funds to meet the deductible.

In this article, we review the top issues that patients are concerned about.

Read more!

 

Current Clinical Trials

Aquinox 301 Leadership Study Seeks Men & Women in USA, Canada & Europe

Women and men needed to participate in a clinical research study of an oral investigational drug for interstitial cystitis/bladder pain syndrome (IC/BPS). The purpose of the LEADERSHIP 301 Trial is to learn if an investigational drug, AQX-1125, may reduce the bladder pain of interstitial cystitis/bladder pain syndrome (IC/BPS) and relieve other symptoms such as urinary urgency and frequency. The study drug is a new type of medication that may help reduce inflammation in the bladder. Read more!

LiNKA Study For Hunner's Lesions

Do you or someone you know suffer from IC with Hunner's Lesions? If so, you are familiar with the pain that can make it difficult to enjoy life. Allergan, Inc. (http://www.allergan.com/home) is enrolling participants for a research study investigating a drug device to evaluate the safety and effectiveness of a continuous release of lidocaine inserted into the bladder compared with placebo for treating the symptoms of IC with Hunner's Lesions in female patients. All patients will have the opportunity to receive the active study drug if they request and satisfy the criteria. Read More!

 

Self-Help Tip

Exercise & Fitness Strategies For IC/BPS

Exercise and Fitness Do's & Don'ts For IC & Chronic Pain Patients

The question that many pain patients face when contemplating exercise is “will it help or hurt?” The evidence is overwhelming in favor of the former. Exercise can lift the spirits, alleviate depression and trigger the release of our bodies natural pain killers, endorphins. Many patients feel that regular exercise helps relieve symptoms thus requiring the use of fewer medications. Exercise can help increase blood flow to the pelvis, thus supporting the delivery of oxygen and other key nutrients to the pelvic organs and muscles. Regular exercise helps to decrease body weight. Perhaps most importantly, exercise can help strengthen (or relax) the pelvic floor muscles.

Read the story here!

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The IC Diet - Simply Delicious: Low Acid Eating Made Simple

IC Diet Project - Celebrating Mexican Cuisine

While everyone’s familiar with tacos and enchiladas, there’s really much more to Mexican cuisine than the blazing hot, spicy fast food we see advertised every day. Many traditional Mexican foods, though not familiar fare in the U.S., are flavorful but not heavily laden with hot spices. Quite a few tasty items are in fact, mild and worthy of a try. Read more!


24/7 ICN Patient Support Forum

ICN Patient Support Forum

 

If you've never met anyone else with IC? If you're feeling alone in your struggle with IC? If you're struggling to figure out why you're flaring? You are not alone! We're here and we can help! The IC Network Support Forum provides hope, comfort and encouragement to patients around the world! We welcome you with open arms. In our forum, you can ask questions, help other patients and, most of all, make friends.

Current Forum Stats

Discussion Threads: 80.226 - Posts: 635,528 - Active Members: 44,284

 

What's New In the ICN Shop! - www.icnsales.com - 800.928.7496

Winter 2017 IC Optimist Released

In this issue:

1. Editorial - Healthcare Activism

2. IC, TMD & COPC’s: How a dental condition changed the future of IC and chronic pain research.

3. Pelvic Floor Physical Therapy Treatment for IC/BPS

4. Why a “Diagnosis Isn’t The Key to Recovery

5. Feature Story – Proactive Patients Have Better Outcomes

6. Chemotherapy and IC: Hunner’s Lesions Present Special Challenges

7. The IC Solution – Best Book In 20 Years

8. The Latest Research

9. Canadian IC Guidelines Adopted

10. Self-Help Tip: Cold & Flu Strategies For IC/BPS

11. IC Diet Project: Slow Cooker Meals For Sensitive Tummies and Bladders

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Desert Harvest RELEVEUM For Vulva & Perineal & Shingles Pain

If you struggle with vulvodynia and/or perineal pain, Desert Harvest Reléveum is worth checking out. It's a 96% natural skin care cream that contains 4% Lidocaine cream and certified organic Aloe Vera gel to help with the irritation, itching and burning associated with vulvodynia, and other perineum irritations. Contains no irritating parabens or chemical additives and contains a unique variety of natural botanicals like Calendula and chamomile to enhance the soothing and healing properties of the Reléveum compound.

Learn more!

GingerBee Heating Pads Back In Stock

The GingerBee microwaveable pelvic heating pad offers penetrating heat to relieve bladder pain, pelvic pain, muscle tension and stress. This is a must have for everyone. With a triangular shape, it fits comfortably over the pelvis yet isn't too heavy to be uncomfortable. Learn more!

Mama Strut Reusable Hot & Cold Packs

We love finding new products that can help patients who suffer with pelvic pain. We found these earlier this spring and fell in love! Mama Strut reusable hot and cold packs are perfect for patients who need to comfort their "nether" region. Shaped like a menstrual pad, they fit comfortably in the crotch area and may help soothe rectal pain, vulvar pain and pelvic floor muscle tenderness. They can be frozen for cold or heated in the microwave and contain instructions on the back of the pad.

IMPORTANT - DO NOT place frozen or hot pack directly on your skin. This, like all other hot or cold products, should be wrapped with a small towel first to protect the especially tender skin in your crotch area.

Each package contains two pads. Dimensions: 7" long by 2.5" wide

Learn more!

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