Information Exchange at Clinical Nutrition Week
Lisa Crosby Metzger
The American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) is to clinicians what Oley is to consumers: a source of information and support regarding IV and tube feeding. At Clinical Nutrition Week (CNW), A.S.P.E.N.’s big annual meeting, the focus is on sharing the newest and best research and techniques and bringing together professionals from many specialties.
Oley staff, board members, and volunteers were at CNW in February. There we gathered information that we hope will benefit consumers, and we disseminated information that we hope will benefit clinicians and, hence, their consumers. By the end of the conference, we’d like to think most everyone had heard of the Oley Foundation (thanks in no small part to Dr. Lyn Howard and Bettemarie Bond, as you’ll see below).
Micronutrients in HPN
Research
is featured prominently at CNW, and a research workshop traditionally precedes
the actual conference. This year, Oley founder Lyn Howard, MB, FRCP, and former
Oley board member Alan Buchman, MD, MSPH, FACP, FACG, organized and chaired an
exciting two-day workshop on micronutrients in home parenteral nutrition (HPN).
In 1979, and again in the mid-1980s, the American Medical Association established guidelines regarding micronutrients in PN. Concerned that these guidelines and the resulting Federal Drug Administration recommendations are outdated, Dr. Howard and
Dr. Buchman located
funding for the workshop and
invited specialists from around the world to present the
most up-to-date research on several micronutrients
where new data or controversy exists.
“We hope,” said Dr. Howard, “this research workshop will lead to an FDA multi-trace element reformulation and the availability of safer commercial products. In fact, a highly desirable outcome would be parenteral micronutrient formulas that meet international acceptance.”
The research proceedings will be published in an upcoming issue of Gastroenterolgy. We hope to bring you pertinent information from some of these specialists in the LifelineLetter as well. We’ll keep you posted on the conclusions.
Giving Voice to the Consumer
CNW offers a great opportunity for consumers to present their perspective to clinicians. This year, Oley members Sheila Messina and Bettemarie Bond addressed an audience about cultivating an effective consumer/clinician relationship. Between them, Sheila and Bettemarie have many years of homePEN experience. Using examples from their own lives, they helped clinicians get a glimpse of life on the other end of the tubing.
Sheila Messina also had a poster accepted for presentation at the conference. In the poster, Sheila detailed how, with the continuous infusion of medicine to control her blood pressure, she has been able to maintain a desirable blood pressure while also maintaining her independence and minimizing the number of times her central line has to be accessed. We hope to post this information on the Oley Web site.
Advocacy Award
This year, A.S.P.E.N. inaugurated the Lyn Howard Nutrition Support Consumer Advocacy Award. When Dr. Howard introduced the award, she made the following remarks: “An experience that we nutritional professionals share is the transforming effect of nutrition support therapy. We watch depleted and depressed individuals who realize their gut is no longer dependable slowly regain their strength and slowly their belief in a future.
“Sometimes, because the gut insufficiency persists, this recovery is much tougher, as this complex nutritional therapy must continue indefinitely and be incorporated into a life plan. As watching professionals, we are not sure we ourselves could do this.
“As the person and their family learns to pick up this burden and walk, our respect grows and we feel very privileged to work with such courageous individuals.
“These people are clearly one of the flagships of A.S.P.E.N.’s professional success. I am delighted A.S.P.E.N. has decided to recognize these individuals and their supporting professionals. I am deeply honored to be linked to this award.”
Bettemarie
Bond was the first recipient of this newly established award. “I am honored to
receive an award named for Dr. Howard,” Bettemarie said. “Her work has truly
bettered my life as well as countless others on PN. I am so grateful to her.”
In 2008, Bettemarie participated in the Digestive Diseases National Coalition Public Policy Forum. One of Bettemarie’s goals was to urge Congress to support the Medicare Home Infusion Act. This act would allow those on nutrition support to work and receive Medicare benefits, which would help them to better manage treatment costs.
After Bettemarie received
the award and shared her story, the audience of 1,800 stood and loud applause
filled the room. An emergency room nurse later commented that she was very moved
by Bettemarie’s story. She, like many clinicians, routinely sees patients in
crisis, but seldom meets homePEN consumers in other settings. She found it
gratifying to know that people can walk out of the hospital and
go on to live their lives with enthusiasm and joy.
Bettemarie participated in advocacy efforts on Capitol Hill again this year. Her activities help politicians realize that homePEN, although expensive, can lead to very substantial rehabilitation. (See also Joan Bishop’s article on Oley advocacy efforts on page 8.)
Exhibiting
The Oley booth was a hub of activity. We talked to hundreds of people. If you think your clinician would benefit from information about Oley, let us know! We’d be happy to send out a packet.
Our sincerest thanks to the volunteers who helped staff the Oley booth: Oley President Rick Davis; board member Laura Matarese, MS, RD, LDN, FADA, CNSD; and members Terry Edwards, Bettemarie Bond, Bette Bond, and Cynthia Bertrand. We couldn’t have done it without you.
Other Exhibits
Oley was represented at many other meetings this winter and spring as well, including: A.S.P.E.N. chapter meetings in New York/Long Island, Arizona, Virginia, and New Jersey; meetings of the Infusion Nurses Society (INS), Association for Gastric Motility Disorders (AGMD), Tennessee Dietetic Association, and International Foundation for Functional Gastric Disorders (IFFGD); and the American Society on Clinical Oncology (ASCO) Cancers Symposium.
We could really use your help at two upcoming meetings! We need volunteers to staff the Oley booth at a meeting of the Infusion Nurses Society in Nashville, May 16, and at Digestive Disease Week in Chicago, May 31 to June 3. If you are available, please contact Kate Swensen at swensek@mail.amc.edu or call the Oley office at (800) 776-OLEY