Get to Know Our New President, Kristin Knipp

January 27, 2010 at 5:47 pm | In Uncategorized | Leave a Comment
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Kristin Knipp of Ohio became UOAA President as of January 1, 2010. She will be preparing messages for the Phoenix magazine, of course, and in addition was invited to prepare a Guest Editorial in the January issue of O/WM – an Ostomy/Wound journal. Please read her article at this link: http://www.o-wm.com/content/forging-clinician-patient-uoaa-partnership .

Kristin led the UOAA Management Board of Directors at a successful and energizing strategic planning session last week, so please be on the look-out for advances and new elements within UOAA – and be prepared to continue to help UOAA achieve its goals.

2009 New Orleans National Conference

August 24, 2009 at 3:06 pm | In Uncategorized | Leave a Comment
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New UOAA PSA

August 12, 2009 at 7:11 pm | In Uncategorized | Leave a Comment

Come and Meet “CoCo”

June 16, 2009 at 12:16 pm | In Uncategorized | Leave a Comment
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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.

           ColossalColon-UOAAhp

Medicare’s ostomy supply payments increase 5 percent

January 22, 2009 at 10:38 am | In Uncategorized | Leave a Comment

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!

FDA warns about BOWEL PREP products

December 22, 2008 at 4:35 pm | In Uncategorized | Leave a Comment

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.

Emergency Care in YOUR State – report issued

December 15, 2008 at 11:35 am | In Uncategorized | Leave a Comment

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 National Report Card on the State of Emergency Medicine was made possible in part by funding from the Emergency Medicine Foundation which gratefully acknowledges the support of the Wellpoint Foundation and Robert Wood Johnson Foundation.

Medicare Prescription Plan Open Enrollment 11/15 to 12/31

November 3, 2008 at 7:56 pm | In Uncategorized | Leave a Comment

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.

All people with Medicare should:

  •  Review the 2009 costs for their current drug and health plan. (Look at premium, co-pays and deductibles.)
  •    Compare the cost and coverage to other plans in their area. (Check to see if the plan covers their medicines, works with their pharmacy and doctors, and covers the services they need.)
  •  Choose a plan that meets their needs.

 

  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 “Compassional Allowances” – faster financial help for very ill Americans

October 28, 2008 at 3:34 pm | In Uncategorized | Leave a Comment

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.”
###

1

Acute Leukemia

2

Adrenal Cancer - with distant metastases or inoperable, unresectable or recurrent

3

Alexander Disease (ALX) – Neonatal and Infantile

4

Amyotrophic Lateral Sclerosis (ALS)

5

Anaplastic Adrenal Cancer - with distant metastases or inoperable, unresectable or recurrent

6

Astrocytoma – Grade III and IV

7

Bladder Cancer - with distant metastases or inoperable or unresectable

8

Bone Cancer – with distant metastases or inoperable or unresectable

9

Breast Cancer – with distant metastases or inoperable or unresectable

10

Canavan Disease (CD)

11

Cerebro Oculo Facio Skeletal (COFS) Syndrome

12

Chronic Myelogenous Leukemia (CML) – Blast Phase

13

Creutzfeldt-Jakob Disease (CJD) – Adult

14

Ependymoblastoma (Child Brain Tumor)

15

Esophageal Cancer

16

Farber’s Disease (FD) – Infantile

17

Friedreichs Ataxia (FRDA)

18

Frontotemporal Dementia (FTD), Picks Disease -Type A – Adult

19

Gallbladder Cancer

20

Gaucher Disease (GD) – Type 2

21

Glioblastoma Multiforme (Brain Tumor)

22

Head and Neck Cancers – with distant metastasis or inoperable or uresectable

23

Infantile Neuroaxonal Dystrophy (INAD)

24

Inflammatory Breast Cancer (IBC)

25

Kidney Cancer – inoperable or unresectable

26

Krabbe Disease (KD) – Infantile

27

Large Intestine Cancer – with distant metastasis or inoperable, unresectable or recurrent

28

Lesch-Nyhan Syndrome (LNS)

29

Liver Cancer

30

Mantle Cell Lymphoma (MCL)

31

Metachromatic Leukodystrophy (MLD) – Late Infantile

32

Niemann-Pick Disease (NPD) – Type A

33

Non-Small Cell Lung Cancer – with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent

34

Ornithine Transcarbamylase (OTC) Deficiency

35

Osteogenesis Imperfecta (OI) – Type II

36

Ovarian Cancer – with distant metastases or inoperable or unresectable

37

Pancreatic Cancer

38

Peritoneal Mesothelioma

39

Pleural Mesothelioma

40

Pompe Disease – Infantile

41

Rett (RTT) Syndrome

42

Salivary Tumors

43

Sandhoff Disease

44

Small Cell Cancer (of the Large Intestine, Ovary, Prostate, or Uterus)

45

Small Cell Lung Cancer

46

Small Intestine Cancer – with distant metastases or inoperable, unresectable or recurrent

47

Spinal Muscular Atrophy (SMA) – Types 0 And 1

48

Stomach Cancer – with distant metastases or inoperable, unresectable or recurrent

49

Thyroid Cancer

50

Ureter Cancer - with distant metastases or inoperable, unresectable or recurrent

Americans With Disabilities Act – significantly improved

September 23, 2008 at 9:55 pm | In Uncategorized | Leave a Comment

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

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