UOAA Conference 2009, NOLA from UOAA on Vimeo.

If you haven’t met her, come to New Orleans this August and really get to know her! She is CoCo, the Colossal Colon. Thanks to an educational grant to UOAA by edgepark arrangements have been made with the exhibit’s owner, The Colon Club, for CoCo to appear at our Conference. She is 40 feet long, 4 feet high and when crawling through her, or looking through one of the many viewing ports you will be able to learn about IBD, polyps, diverticula, hemorrhoids and other intestinal nasties. CoCo travels the country promoting awareness about diseases of the colon and encourages viewers to get regular check ups including periodic colonoscopy exams. She will be open to both UOAA Conference attendees as well as the general public on Thursday August 6th from noon to 5:00 pm; on Friday, the 7th from 9:00 am to 5:00 pm August and on Saturday, the 8th, from 9:00 am to 3:00 pm in the Sheraton Hotel’s ground floor Gallery Room.

As of 1-1-09, the amount that Medicare will pay for ostomy supply items increased by 5% (as it did for most items in the category called “Durable Medical Equipment-Prosthetics, Orthotics and Supplies”). If you obtain your products from a supplier that accepts Medicare assignment, you will not notice much difference, but the supplier will receive more when Medicare pays the claim (and it will show up on the Explanation of Benefits form you receive).
If you pay for your supplies at the time of purchase and are reimbursed by Medicare, you will see this increase in your check. BUT the increase provides an opportunity for you to ask if your supplier will now accept assignment on your order, since the amount suppliers will be reimbursed is a little better than it was. When your supplier accepts assignment, they are required to pay for the shipping – that alone is a good savings for you. And you will not have to make that upfront payment for the full retail price and wait for Medicare to pay you back. So have a chat with your supplier!

Because of additional reports of serious kidney damage, the Food and Drug Administration (FDA) issued an alert on November 11, 2008 requiring that Black Box warnings be added to the labels for oral sodium phosphate prescription tablets Visicol® and OsmoPrep®. On December 11, 2008 the C.B. Fleet Company voluntarily recalled all their over-the-counter oral sodium phosphate products including Fleet Phospho-soda® and Fleet EZ-Prep™ Bowel Cleansing System.

When used for bowel cleansing before colonoscopy, the products can very rarely cause acute phosphate nephropathy, resulting in permanent kidney damage. 

See the FDA information, and access the page where you can file your own adverse event concerning any FDA-approved product, at http://www.fda.gov/cder/drug/infopage/OSP_solution/default.htm .

See more information from the Colorectal Cancer Coalition (C3) at this link.

So if your New Year’s Resolution includes having a colonoscopy or other colon text, please get a new recommendation from your physician for the bowel prep that will be needed.

WILL LIFE-SAVING EMERGENCY CARE BE THERE WHEN YOU NEED IT?

The National Report Card on the State of Emergency Medicine assesses the support that each state and the District of Columbia provides for their emergency care systems. A wake-up call for policymakers, the report underscores the challenges facing patients who need emergency care and recognizes efforts to address these needs. This report should motivate state and national policy support for improving emergency care systems. With a financial crisis and failing health care system, never before has the emergency department been more vital to everyone.

SELECT YOUR STATE HERE TO SEE MORE DETAILS: http://www.emreportcard.org/
 

The 2009 open enrollment period for a person to enroll in or change a Medicare prescription drug plan begins on November 15 and ends on December 31, 2008. Because many people with Medicare will see significant changes in their current drug plan premiums or plan coverage, now is the time for people with Medicare to review the changes being made by their current plan and compare it to others to make sure it still meets their needs. Those who don’t have prescription drug coverage can also enroll in a drug plan during open enrollment.

  Review your plan and act early to avoid any inconvenience at the pharmacy counter in January. Plans change. You change. Now is the time to shop and compare. Go to www.medicare.gov or call 800/MEDICARE (800/633 4227) or TTY 877/486-2048.

Social Security Announces Nationwide Launch of Compassionate Allowances
Process Will Fast Track Applications For People with Cancers and Rare Diseases

Oct. 27, 2008  — Michael J. Astrue, Commissioner of Social Security, today announced the national rollout of the agency’s Compassionate Allowances initiative, a way to expedite the processing of disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security’s standards.

“Getting benefits quickly to people with the most severe medical conditions is both the right and the compassionate thing to do,” Commissioner Astrue said. “This initiative will allow us to make decisions on these cases in a matter of days, rather than months or years.”

Social Security is launching this expedited decision process with a total of 50 conditions. Over time, more diseases and conditions will be added. A list of the first 50 impairments — 25 rare diseases and 25 cancers — can be found at www.socialsecurity.gov/compassionateallowances.

Before announcing this initiative, Social Security held public hearings to receive information from experts on rare diseases and cancers. The agency also enlisted the assistance of the National Institutes of Health.

Compassionate Allowances is the second piece of the agency’s two-track, fast-track system for certain disability claims. When combined with the agency’s Quick Disability Determination process, and once fully implemented, this two-track system could result in six to nine percent of disability claims, the cases for as much as a quarter million people, being decided in an average of six to eight days.

“This is an outstanding achievement for the Social Security Administration,” said Peter Saltonstall, President of the National Organization for Rare Disorders. “It has taken Social Security less than a year to develop this much-needed program that will benefit those whose claims merit expedited consideration based on the nature of their disease. Disability backlogs cause a hardship for patients and their families. Commissioner Astrue and his staff deserve our thanks for a job well done.”

“Unfortunately, many hardworking people with cancer may not only face intensive treatment to save their lives, but they may also find themselves truly unable to perform their daily work-related activities and as result, may face serious financial concerns, such as the loss of income and the cost of treatment,” said Daniel E. Smith, president of the American Cancer Society Cancer Action Network. “The Social Security Administration’s Compassionate Allowances program will help streamline the disability benefits application process so that benefits are quickly provided to those who need them most.”

“This is America, and it simply is not acceptable for people to wait years for a final decision on a disability claim,” Commissioner Astrue said. “I am committed to a process that is as fair and speedy as possible. The launch of Compassionate Allowances is another step to ensuring Americans with disabilities, especially those with certain cancers and rare diseases, get the benefits they need quickly.”
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For this news, we are borrowing from Jennifer Jaff, Esq., a good friend to all who suffer from a chronic illness.  She has announced that last week…

“… Congress passed the Americans with Disabilities Act (ADA) Amendments of 2008, and President Bush has stated that he will sign it.  This is a very exciting development.  Congress has overturned two Supreme Court cases that significantly narrowed the scope of the ADA.  It has make clear that bodily functions such as bowel, bladder, digestion, immune system, cell growth, brain, and circulatory functions, among others, can be just as disabling as the inability to see, hear, or walk.

But most importantly, Congress has said “An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.”  This is Congress’s first explicit recognition of the disabling effects of chronic illness.  We have — finally — been heard.

We will learn more about the reach of these broader provisions as they are interpreted by federal agencies and the courts.  But there can be no question that this is a very significant victory for the chronically ill. ”

_____________________________________
Jennifer C. Jaff, Esq.
Advocacy for Patients with Chronic Illness, Inc.
patient_advocate@sbcglobal.net
www.advocacyforpatients.org

UOAA UPDATES are sent via email bi-monthly to our affiliated support groups, and will also now be available here on our blog. They are our way of communicating what’s happening within UOAA to you, our members.

THEMED PHOENIX PATIENT RESOURCE MAGAZINES

UOAA hit a homerun with this project!! I am most pleased to report that the 4 Phoenix Patient Resource magazines, i.e. those written specifically for new Colostomy patients, new Ileostomy patients, new Urostomy patients, and new Continent Diversion patients, have met with overwhelming approval by Hospitals and medical professionals throughout the US. Designed to be part of the information given to new patients by ASG members making visits, many WOC Nurses have requested copies in those areas where there are no UOAA affiliates. The cost of these magazines is being underwritten by UOAA as a service to its affiliates and the ostomy communities they serve. While supplies last, if you want to receive additional copies, contact Joan McGorry in the UOAA office. Because the quantities are limited, orders may not exceed six copies of any one themed magazine per order, and, there needs to be a minimum of 2 months between repeat orders. There will be a $ 5.00 charge per order to cover shipping expenses.
* Please note that these magazines are available to support group leaders only, and will not, at this time, be sold to the general public.

ASG LEADERSHIP ADVISORY BOARD

The ASG Advisory Board, which presently consists of the ASG Leadership Award recipients, will be increased to 8 members this Fall when the MBoD appoints 4 more members. These new members will serve a two-year term commencing January 1, 2009. In order to identify candidates for the ASG AB, members of the MBoD, those presently serving on the Advisory Board and the members of UOAA’s Board of Trustees have been asked to communicate with people they think would serve well at the national level. Those ASG leaders who are contacted, who say “Yes, I am interested in serving”, will be asked to send a letter to our Office Administrator, Joan McGorry, by November 1st, describing why they should be selected. These letters will be distributed to the MBoD, and the top 4 judged to be most qualified by the MBoD at its November 21st Annual Meeting in Cherry Hill, NJ, will be appointed.

OFFICE STAFF

Have you called the 800-826-0826 number lately expecting to speak with Joan, only to find out there was someone else on the other end? Earlier this year Joan hired an assistant, Linda Torres, to work with her part time serving UOAA. Linda also helps Joan with mailings and will be very active as we start to prepare for next year’s conference in New Orleans.

UOAA has entered into a contract agreement with Rita Hillis, a retired WOC Nurse (RN, BSN, CWOCN to be exact) who will answer the questions of people who call the 800 # looking for some stoma-related advice. If a WOC Nurse cannot be identified who lives near the caller, contact information will be given to Rita. This is yet another free service UOAA provides to the ostomy community.

UOAA ANNUAL AFFILIATION FEE

At its meeting held on August 22nd and 23rd, the UOAA Management Board of Directors voted to keep the Annual Affiliation Fee at the same rate of $ 2.00 per member or $ 25.00 for those support groups that report “no members”. Payments for 2009 at due January 1st, 2009.

In another action the MBoD determined that those ASGs that have not paid their 2008 affiliation fee, will have information about their group removed from the UOAA website on January 1, 2009, and their listing in The Phoenix

magazine removed from the support group listing beginning with the Winter 2008 issue. If the group chooses to pay the fee, their listings will be reinstated. Notes will be added to the website and magazine advising persons not finding a listing for a group in their area to contact the UOAA Office for further information.

VOLUNTEERS NEEDED

One of the projects that UOAA is undertaking is the production of a short DVD designed to inspire and encourage new ostomates, helping them to realize that it is possible to live a happy and productive lifestyle with an ostomy of any type. We are looking for volunteers of all ages and ethnicities who are willing to participate in this video. Their role would be to show, by example, either their employment, hobbies, outside interests or volunteer work and thereby demonstrate to the general public that having an ostomy does not prohibit a person from living a life of quality, productivity and happiness.

If you are interested in being a participant in this project, please contact the UOAA office at 1-800-826-0826 and we will put you in contact with the project director. Please understand that we expect to receive many more applications than we can include in this brief video, so do not take it personally if we cannot include you.