Stepping Up For Ourselves and Others
By Patti Suler, revised June 20, 2014
Those of us in the ostomate community have found that once we adjust to our intestinal or
urinary diversions, we often resume our lives with little thought to the political architecture
around us. Yet we do belong to a larger community that has unique issues and needs.
An ostomate would no more leave the house for work or school without their pouching system
than an amputee would leave without their artificial leg. Most permanent ostomates are
amputees having had their internal organs removed or reconstructed to such a point that reversal
is not an option.
Medical terms define a prosthesis, prosthetic, or prosthetic limb as an artificial device
extension that replaces a missing body part. Our pouching systems replace the functionality of
our amputated organs. Awareness of this basic fact and its broader implications is the first step
in addressing ignorance and bureaucracy.
Last year (2013) there was a noticeable movement identified by UOAA Advocacy Linda Aukett
as she monitored two pending legislative proposals. The 112th Congressional Session received
House Resolution 152 introduced by Representative Leonard Lance of New Jersey’s 7th District
and a similar Senate Resolution 95 by Senator Richard Burr of North Carolina on March 8th of
this year. Both resolutions, although differently worded, request similar attention.
HR 152 text highlights (complete resolution text can be viewed via the Google search engine)
Identifying the key issues:
- Whereas following ostomy surgery, patients need specially selected medical prosthetics
to manage, temporarily or permanently restore intestinal or urinary system function, re-
establish activities of daily living, improve quality of life; and require access to uniquely
skilled ostomy specialty nurses who recommend and customize ostomy products for
- Whereas, however, ostomy products are reimbursed under the Medicare program as
medical supplies and not as prosthetics;…
- Whereas there is a significant inconsistency under the Medicare program between the
coverage category of, and reimbursement policy for, ostomy products;…
- Whereas ostomy products are prosthetic devices prescribed by health care providers and
meet the definition of prosthetics under the Medicare program;…
- Whereas the Federal law does not require coverage of prosthetics, including ostomy
products, under the Medicaid program;…
- Whereas ostomy products are customized to the clinical needs of individual patients and
are not the same as other easily interchangeable medical supplies such as gauze and
Identifying the key recognitions:
- Recognizes the life-saving role of ostomy care and prosthetics in the daily lives of
hundreds of thousands of people in the United States and the necessity of a specialized
ostomy nurse to recommend and customize ostomy prosthesis for the individual;
- recognizes if a surgical procedure results in a patient needing a prosthetic that
manages or restores intestinal or urinary system function--specifically the control of the
elimination of the body's waste products, then such a patient should have access to
individually prescribed, customized prosthetics that the health care provider believes will
best meet the patient's needs;
- urges that ostomy products be recognized, categorized, covered, and adequately
reimbursed by Medicare in a new payment category of ``prosthetic supplies'' consistent
with Medicare's current recognition of ostomy products as prosthetics in order to allow
appropriate patient access; and
- Urges the Secretary of Health and Human Services to ensure that programs, policies,
and payment practices of the Department of Health and Human Services facilitate, and do
not discourage, innovation of and access to medical devices that restore or improve
intestinal or urinary system function of individuals in the United States with an ostomy.
Linda Aukett, the UOAA’s Advocacy Chair, advised regarding the significance of these
resolutions and how they relate to our community. She stated “It is very important our public
policy makers understand that ostomy pouches and wafers are very different in function than
single-use medical supplies such as bandages."
Ms. Aukett went on to state that these key issues have needed attention for a long time. She
shared that this particular set of resolutions had a strong beginning as they were introduced at the
same the Great Comebacks awards were made. Each of the award recipients had the opportunity
to meet with their representatives in person while in Washington DC.
Both initiatives failed.
Sadly, Linda Aukett passed away in the Spring of 2013 unaware of the initiatives’ outcome. The
UOAA Avocacy section is now staffed by Doug Shefsky, Advocacy Chair, and his co-worker
Colin Cooke. They have taken over from where Ms. Aukett left off. They are currently working
on information regarding the New York and Maryland state initiatives. Advocacy for our
members is a top priority for UOAA. Our leaders in Washington D.C. need to know of our
supply needs and how this affects our quality of life. We appreciate all the donations that have
been sent in specifically for our Advocacy program.
As a group, we have spent a lot of discussion time talking about volunteer opportunities and
ways to make a lasting difference. Let’s join together and continue Linda Aukett’s actions on
behalf of all ostomates.
Linda Aukett shared that every email or letter sent was important, however, in today’s high tech
arena, a simple sincere phone call was even more powerful as a follow-up or substitution to the
email. If you don’t have the resources to contact your representatives electronically, consider
working with a family member who does or possibly using free computer access at the local
Calling Your Congressional Representatives
If you are going to call, be prepared to provide your name, address, and ZIP code so the staff can
verify you are a constituent of the Member of Congress. Reference the resolutions specifically
by bill number and session number. Talk about the impact of the resolution on you and your
own reason for supporting it. Recommendations are that you personalize, stay short and on
target with your issue. No resolution? Let them know how important this issue is to you and
Our representatives are only able to respond to their constituents, people who live in their service
area. To save time, please verify you are contacting the correct representative either by checking
on your voter registration card (Us Rep or State Senator boxes). If you do not have your voter
registration card handy, you can contact your local Tax Office for the same information or use the button below.
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