Winter 2022/2023 LifelineLetter

WINTER 2022/2023

What’s Inside:

Living with home parenteral and/or enteral nutrition (HPEN)

Let’s Talk Annual Conference!

Oley Corner

Page 2

Tube Talk

Page 3

Oley Calendar

Page 4

HPN Research Prize Page 4 Mini Meetings and Webinars Page 4 DDNC Public Policy Forum Page 5 40th Anniversary Invitation Pages 6 Oley Staff Updates Page 7 On Your Behalf

Page 8

Oley Foundation Strategic Vision Page 10 2023 Oley Awards Page 13 Donor News Pages 18–19 Share Stories

LifelineLetter

Page 20

A highlight of the year for many of our members is the in-person annual conference. Due to restrictions, we have not been able to gather in person since 2019.

Oley board and staff are thrilled to invite you to attend the 2023 Annual Conference!

Make plans to join us in St. Louis June 27–30.

Our theme this year is “Gateway to the Future,” partly because the Hyatt is located adjacent to the famous Gateway Arch monument, but also because it is a fitting theme for where Oley is as an organization. In 2023, we celebrate the 40th anniversary of our organization. We will look back on where we have been, but also

look to where we are headed.

If you are interested in submitting a topic for consideration, it’s not too late. Please submit your ideas by February 28 at tinyurl.com/Oleytopicsubmission.

Details on how to register, hotel information and conference schedule will be coming out shortly.

Keep an eye on oley.org/ Oley2023. For those who are unable to attend in person in St. Louis, we will also be having a virtual component of the education sessions.

Whether you've been with Oley since the 1980s or just joined, we look forward to seeing you soon! ●

Characteristics of Chronic Intestinal Failure in the United States

A Tubie Goes Backpacking

Adapted from Mundi MS, Mercer DF, Iyer K, et al. Characteristics of chronic intestinal failure in the USA based on analysis of claims data. J Parenter Enteral Nutr. 2022:1-9. doi 10.1002/ jpen.2426, with permission of the publisher.

How many people in the United States are living with chronic intestinal failure (CIF)* and requiring home parenteral (IV ) nutrition (HPN)? How and where are they managed, and by whom? Information such as this could help focus research and resources where they can have the most impact, and help lessen the burden on patients with CIF on HPN and their caregivers. It would help in determining what works in caring for this population, and what doesn’t, and in validating some of the challenges we know they face—in part by listening Characteristics, cont. on pg. 14.

Steve Larson

I am a seventy-year-old highly active man. I travel both domestically and internationally, have done Ironman races, and am a long-time avid backpacker. I had neck cancer about twelve years ago and the radiation finally caught up with me last summer…I needed a feeding tube!

It was certainly Steve backpacking in not a happy occaCalifornia sion, but I did need it. I was fighting to eat every meal, coughing and aspirating all the time. I was losing weightand things were not going to improve. My doctors concurred: it was time for a feeding tube.

Backpacking, cont. on pg. 12

Oley Corner

LifelineLetter Winter 2022/2023 • Volume XLIII, No. 5

Publisher: The Oley Foundation Albany Medical Center, MC-28 99 Delaware Avenue Delmar, NY 12054 (518) 262-5079, Fax: (518) 262-5528 oley.org Executive Director: Beth Gore • beth.gore@oley.org Executive Director Emeritus Joan Bishop • bishopj@amc.edu Editor, LifelineLetter; Director, Community Engagement: Lisa Crosby Metzger • metzgel@amc.edu Manager of Education and Innovation: Maisy Cyr • maisy.cyr@oley.org Manager of Clinical and Corporate Engagement: Andrea Taylor, RD, CNSC • andrea.taylor@oley.org Administrative Assistant: Cathy Harrington • harrinc@amc.edu Member Coordinator: Mary Wootten • mary.wootten@oley.org Science & Medicine Advisor: Manpreet Mundi, MD Medical Director/Co-Founder: Lyn Howard, MB, FRCP, FACP Oley Board of Trustees: Kelly Tappenden, PhD, RD, President; Shirley Huang, MD, Vice President; Steve Atkinson, Treasurer; Vanessa Kumpf, PharmD, BCNSP, FASPEN, Secretary; Lisa Epp, RDN, CNSC, LD; John Mahalchak; David F. Mercer, MD, PhD, FRCSC, FACS; Sharon Rose, RN Oley Advisory Council: Rhonda Arends; Jane Balint, MD; Kevin Baskin, MD; Melissa Bill; Elizabeth Bond, RN; Lynda Bosworth; Phila Breeding, RN; Alan Buchman, MD, MSPH, FACN, FACP, FACG, AGAF; Marcia Denenholz; Terry Edwards; Paula Foiw-Washesky, RD, LDN, MBA; Madalyn George-Thiemann, RN, CNS; Kathleen Gura, PharmD, BCNSP, FASHP, FPPAG, FASPN; Jocelyn Hill, MN, RN, CVAA(c), OCN, CRNI, VABC; Joy McVey Hugick; Kishore Iyer, MBBS, FRCS, FACS; Swapna Kakani, MPH; Barbara Kapuscinska Kelly, MD; Sue Koprucki; Jack Leibee; Laura E. Matarese, PhD, RDN, LDN, CNSC, FADA, FASPEN; Russell J. Merritt, MD, PhD; Ann Michalek, MD; Jay M. Mirtallo, MS, RPh, BCNSP, FASHP; Laurie Reyen, RN, MN; Vicki Ross, RD, PhD, CNSC; Trish Skiendziel, RD, LD, CNSC; Michael Smith; Bob and Mary Smithers; Ezra Steiger, MD, FACS, FASPEN; and Marion Winkler, PhD, RD, LDN, CNSC Subscriptions: The LifelineLetter is a quarterly newsletter available free of charge at oley. org. The newsletter is available by mail upon request. Items published are provided as an open forum for the HPEN community and should not imply endorsement by the Oley Foundation. All items/ads/suggestions should be discussed with your healthcare provider prior to actual use. Correspondence can be sent to the Editor at the address above. Medical/scientific content contained herein has been peer reviewed by an Oley advisor or trustee.

2 — LifelineLetter • (518) 262-5079

Our Mission ...is to enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community and innovation.

The Oley Foundation provides its 27,000+ members with critical information on topics such as medical advances, research, and health insurance. The foundation is also a source of support, helping consumers on home IV nutrition and tube feeding overcome challenges, such as their inability to eat and altered body image. All Oley programs are offered FREE of CHARGE to consumers and their families.

Oley Foundation Programs • LifelineLetter • Peer to Peer Support • Conferences and Webinars • Resources to Promote Living Well on Tube Feeding and IV Nutrition • Enteral Donation Program (under construction) • Advocacy and Awareness Resource Spotlight: Focus Groups/Market Research Market research helps industry create better products, ensures the end-user voice is heard, and provides funding for Oley programs. The research is initiated and funded by industry. Oley’s role is simply to connect industry with home nutrition support consumers and/or their caregivers who may use their products.

These events are open by invitation only, on a first-come, firstserved basis, for individuals who fit within the research parameters outlined by the company conducting the research.

If you are interested in participating, it’s essential that we have your current e-mail address, telephone number and medical information (diagnosis, therapy, etc.). Please update your Oley membership profile. For help updating your profile, go to oley. org/page/help. If you have questions, call us at (518) 262-5079.

Note that focus groups and market research are different from research studies or clinical research. These are typically conducted by clinicians and the researchers must abide by rigorous guidelines. Information generated by this type of research may result in a therapeutic treatment or technique, or contribute to a better understanding of a body system or consumers’ health.

We do list research studies that we think would be of interest to Oley members in the newsletter and on our website (see oley.org/ Join_A_study). These have been reviewed and deemed appropriate for home IV nutrition or tube feeding consumers/caregivers by Oley advisors. The Oley Foundation strongly encourages anyone considering participating in medical research to discuss the issue with their managing physician before signing up.

How to Support Oley Donations are tax deductible and are accepted at oley.org/ donations or at the street address listed on the left. We appreciate your support.

Winter 2022/23

Tube Feeding Tips

Tube Talk

Send your tips, questions, and thoughts about home tube feeding (home enteral nutrition, or HEN) to metzgel@amc.edu. Information shared in this column represents the experience of the individual and, while medical information is reviewed by an advisor, should not imply endorsement by the Oley Foundation. The foundation strongly encourages readers to discuss any suggestions with their clinician before making any changes in their care.

Helping children shine their brightest Complete, balanced nutrition designed to support: ✓ Growth and development ✓ Immune system ✓ Brain and eye function

EIN • VITAMIN OT A PR WITH NUTRIENTS FOR

IMMUNE SYSTEM SUPPORT

†

S

Volume XLIII, No. 5

TI O X I D A N T

The Global Enteral Device Supplier Association (GEDSA) recently released a resource to provide information on ENFit medication syringes and other ENFit supplies for medication administration. The “Pharmacy Resource Guide” will help patients and caregivers understand what products exist to help with enteral medication administration using ENFit products, and where or how to get those products. Consumers and caregivers can share this resource with the retail pharmacies they use and the company that provides their tube feeding supplies. The guide, along with other information on ENFit, is available at stayconnected.org.

The Oley Foundation recently published a helpful guide on what consumers and caregivers need to know about ENFit. That guide can be found at oley.org/ NewENConnectors.

AN

ENFit Resources for Consumers and Caregivers

PR E

• VITAMIN D

✓ Easier digestion

ZI NC

Tell Others: Feeding Tube Awareness Week, February 6–10, 2023 Why? • Help others understand what life with feeding tubes and enteral nutrition is all about.

• Increase tolerance and knowledge.

• Create bridges to people who are feeling isolated or struggling with tube feeding.

How? • Share your photo for our social media posts! Submit to oleyfoundation@gmail. com by February 4. Include first name and the answer to one or more of these questions: What does tube feeding mean to you? What goals or challenges do you see in 2023? What would you want others to know about tube feeding and/ or your diagnosis?

• Share your story in a press release or in your blog. How is tube feeding helping you or your child be active or grow? What do you do if/when you or your child can’t eat? How do you cope with the challenges of tube feeding?

• Join us on Facebook or the Oley-Inspire forum for daily discussions.

• Watch Oley's awareness videos from years past on the Oley YouTube channel (youtube.com/TheOleyFoundation)—and share it!

• Talk to your friends and family, or school or church groups. Have a frank conversation about something you find challenging, or take the opportunity for “show and tell,” as you are comfortable.

• Request your Feeding Tube Awareness buttons today in the Oley store or by email to oleyfoundation@gmail.com.

We are here to support you. Contact metzgel@amc.edu or call (518) 262-5079.

FEEDING TUBE AWARENESS WEEK® is a registered trademark of Feeding Tube Awareness Foundation, Inc. and is used here under license.

* BIOTIC FIBER

Visit PediaSurePeptide.com for more information * PediaSure Peptide supplies prebiotic fiber as NutraFlora® scFOS®. †

Vitamins C & E and selenium.

Nutraflora® and scFOS® are not registered trademarks of Abbott Laboratories.

©2022 Abbott 202213008/December 2022 LITHO IN USA

(518) 262-5079 • LifelineLetter — 3

Oley News

Apply for HPN Research Prize: 2022–2023 Oley Calendar $7,500 in Awards!

Oley2022: A “Fantastic Way” to Please check oley.org or other appropriate websites for the The HPN Research Prize encourages clinical research Connect and Learnon the events listed below most up to date information focused on improving the quality of life for home parenteral (IV ) nutrition consumers. Since the HPN Research Prize was established fifteen years ago, the prize has been awarded to forty-five researchers!

Oley will award $2,500 to each of the three clinical research papers best aligned with the foundation’s mission to enhance the lives of HPN patients, and that generate interest among HPN patients and improve their well-being.

A portion of each prize ($1,000) will be used towards travel expenses to bring the primary author of each winning paper to the Oley Annual Consumer/Clinician Conference in St. Louis, Missouri, to present their research. We are grateful to Nutrishare, Inc., for sponsoring the prizes.

To apply, researchers must submit their abstracts to the Oley Foundation by March 17, 2023. The abstract must have been accepted for poster or oral presentation, or publication by a respected, relevant professional association such as ASPEN, ESPEN, INS, AGA, etc. between July 2021 and March 2023.

For additional details and application go to oley.org/ HPN_ResearchPrize.

Corporate partners take note! If you'd like to sponsor a prize focused on research in the field of enteral nutrition, contact Andrea at andrea.taylor@oley.org or call the Oley office at (518) 262-5079.

Oley2022, “Alive, Well, and Even Better!,” was hosted virtually in Ongoing: Applications being accepted for Oley Tim Weaver August. Over the three days, participants heard from fellow enteral Camp Scholarship. Note: scholarships will be honored at a and parenteral nutrition consumers, caregivers and siblings, as well later date in the event of a coronavirus complication (i.e., camp as experts in the field of nutrition support. If you missed any of the closures, COVID-19 illness, self or mandatory quarantines, etc.). content, it’s not too late to watch.

Here’s what couple of people40th whoAnniversary attended several sessions of February 2 :aOley Foundation Celebration Oley2022 thought of the experience: “I loved the virtual Oley Having a choice between February 2 (and then theconference. first Thursday of every month): parenteral failure, and enteral nutrition [tracks] Nutritionnutrition, Group 4intestinal All Feeding Tube/TPN Support Group was an excellent idea.

Now Ambassador I really like hearing Kishore and all (virtual), hosted

by Oley CrystalDr. Killian* the advances in intestinal care, but splitting the conference into February 6–10: Feeding Tube Awareness Week separate themes was wonderful.

“I loved the ‘show and tell’ aspect of the virtual topics in the home tube February 7: Oley Webinar, "Managing Tube Feeding at feeding/enteral track. The extended question and answer periods were School and Work" especially great. Judging by the questions asked, there’s a definite need forFebruary that.

8 (and then second Wednesday of every month): “I would like(ages to see moresupport virtual events. me, it’shosted very easy Young adult 18–35) group*For (virtual), by to schedule my attendance and choose which topic I’ d like to join.

Oley Ambassador Darla Burr “Overall, I thought the 2022 virtual conference was excellent. It reflected a lot of hard work theThursday Oley staff.ofIevery hope month): others had a February 9 (and then the from second similar positive experience. ” Group for Patients and CaregivTube Feeding/TPN Support ers (virtual), hosted by Oley Ambassador Barbara Rudzin* February 23 (and then the fourth Thursday of every month): TPN Support Group for Consumers and Caregivers (virtual), hosted by Amber Gates* February 28: Oley Mini Meeting, “Listen to Your Gut and the Experts: HPEN Advice and Updates” (virtual) March 5–6: Oley participating in Digestive Disease National Coalition (DNNC) Spring Public Policy Forum (virtual and in person, Washington, DC) March 17: Deadline for HPN Research Prize submissions and Oley award nominations March 25–29: Oley exhibiting at National Home Infusion Association (NHIA) conference, Washington, DC April 1–4: Oley exhibiting at Infusion Nurses Society (INS) conference, Boston, MA April 20–23: Oley exhibiting at American Society for Parenteral & Enteral Nutrition (ASPEN) conference, Las Vegas, NV June 27–30: Oley Annual Conference, "Gateway to the Future," St. Louis, MO, and virtual *For more information on support groups and Kidz Klub meetings, go to oley.org/SupportGroups; for other meetings, email harrinc@amc.edu or call (518) 262-5079.

4 — LifelineLetter • (518) 262-5079

Winter 2022/23

Oley News

Mini Meetings and Webinars Oley’s mini meetings and webinars offer a variety of opportunities to learn and engage with other members virtually. Oley webinars cover a singular topic in one to two hours, often featuring an expert clinician. Mini meetings are three to four hours, and cover several topics.

They may include educational topics, consumer stories, sponsor-coordinated sessions, and interactive breakouts or Q&A sessions.

Webinars and mini meetings are coordinated for home nutrition support consumers and family members/caregivers, but everyone is encouraged to attend and learn!

Feeding Tube Awareness Week Webinar

February 7 | 1:00–2:00 p.m. EST Managing Tube Feeding at School and Work Trying to navigate work or school and maintain a sense of normalcy can be difficult while managing feedings, infusions, and other challenges that accompany life with tubes. Listen as Max, his mom Michelle, and Carol Cheney, a staff nurse for the Center for Advanced Intestinal Rehabilitation (CAIR) program at Boston Children’s Hospital, share important things to remember when making a plan to return to work or school with a feeding tube or central line.

Spring Public Policy Forum The Digestive Disease National Coalition (DDNC) Spring Public Policy Forum will be held March 5–6 and will include both in-person and virtual congressional advocacy opportunities. You can choose to participate in person in Washington, D.C., or remotely.

The Spring Public Policy Forum brings together patient advocates, healthcare providers, and industry and professional society representatives concerned with digestive diseases. On Sunday, March 5, attendees, including Oley Foundation staff and volunteers, will hear from leaders in the digestive disease community and learn about key legislative issues impacting the community. On Monday, March 6, attendees will share their stories and advocate for digestive disease research and improved patient care in meetings with Capitol Hill congressional offices.

Register Now! You can register for and find more information about the DDNC Public Policy Forum at ddnc.org/public-policyforum. There is no charge for participating. Questions?

Contact Lisa Metzger with the Oley Foundation (metzgel@ amc.edu or 518-262-5079) or Jackson Rau at the DDNC (Rau@HMCW.org or 202-544-7497).

Mini Meeting

Listen to Your Gut and the Experts: HPEN Advice and Updates February 28 | 11:00 a.m.–2:30 pm EST Sponsored by Schedule includes: • HPEN consumers sharing their stories • “Get to Know Your Guts,” with Daniel Yeh, MD • an “Ask the Expert” session on preventing and troubleshooting PN and EN complications, with Daniel Yeh, MD, and Kristi Griggs, RN • “Latest Updates in Short Bowel Syndrome with Intestinal Failure,” Donald Kirby, MD, coordinated by VectivBio • breakout sessions on mental health support, managing day-to-day life with EN and/or PN, and coping with diarrhea, gas, and stoma leaks For more information and to register (no charge), visit oley.org/Enrichmentprograms.

Volume XLIII, No. 5

Kangaroo™ is by your side.

Wherever, Whenever.

Find out more at cardinalhealth.com/kangaroo © 2021 Cardinal Health. All Rights Reserved. CARDINAL HEALTH, KANGAROO and the Cardinal Health LOGO are trademarks of Cardinal Health and may be registered in the US and/or in other countries. Lit. No. 2MS21-1352162 (03/2021)

(518) 262-5079 • LifelineLetter — 5

Community News

N I VITED E R ' U !

YO The 40th anniversary is a milestone we will be celebrating all year! We will be kicking off the year-long celebration on 2/2/23 with a look back across the decades as well as a look forward to the coming years.

Hear from Co-Founder Dr. Lyn Howard*, Members of Co-Founder Clarence (Oley) Oldenburg family*, Oley Staff and local members. *Weather permitting

3:30 PM - 6.00 PM FEBRUARY 2, 2023 HILTON GARDEN INN 62 NEW SCOTLAND AVE ALBANY, NY OR JOIN US VIRTUALLY ON ZOOM!

BUSINESS CASUAL LIGHT HORS D'OEUVRES WILL BE SERVED

REGISTER ONLINE oley.org/event/40thAnniversary

FOR MORE INFORMATION: HARRINC@AMC.EDU (518) 262-5079

SPONSORED BY:

6 — LifelineLetter • (518) 262-5079

Winter 2022/23

Oley News

Staff Updates Roslyn Dahl

Long-time employee Roslyn Dahl, Oley’s Director of Communications and Development, left the foundation in October 2022. During her twenty-seven years with Oley, Roz served in various roles and touched many lives. She was always willing to go above and beyond to fill in the gaps, and to serve Oley members. Her relationships with Roslyn Dahl and dedication to our corporate partners was a key part in keeping Oley financially sound.

She also built strong friendships with Oley members over the decades, and found joy and inspiration in her many interactions with members. "I am so grateful to have worked in this community," said Roz. "I have learned so much. It has shaped who I have become." Roz's dedication and passion made her a great colleague, friend and resource. The Oley community thanks her for her years of service. We miss her and wish her well in her next adventure.

Maisy Cyr Maisy Cyr joined the Oley staff in December as Manager of Education and Innovation.

Maisy and her family have been involved with Oley since Maisy was young. As a home nutrition support consumer herself, she is passionate about making sure patients and families have a voice in the IV nutrition and tube feeding community. She has a master’s degree in social work and has built a career around sharing information and resources.

Maisy Cyr As Manager of Education and Innovation, Maisy’s role is to bring relevant and up-to-date information directly to home nutrition support consumers in the form of webinars, regional and mini meetings, and the annual conference, as well as resources shared on the Oley website. In this role, she also hopes to create space for progressive conversations between consumers, corporate partners and clinicians and shine a light on the innovation and ingenuity our patients and families show every day as they navigate living with enteral and/or parenteral nutrition.

Volume XLIII, No. 5

Andrea Taylor Andrea Taylor, RD, CNSC, joined the Oley staff in November. Andrea brings her clinical experience and passion to the position of Manager of Clinical and Corporate Engagement. Andrea has been a dietitian for over seventeen years, with over fifteen of those years as a certified nutrition support clinician (CNSC). Andrea received her bachelor’s degree from the University of Akron in Akron, Ohio, and built her nutrition support foundation working at the University of Maryland Medical Center in Baltimore, Maryland. After relocating to Rochester, New York, in June 2013 for her husband’s job, she followed her interest in nutrition support by joining Coram as a home nutrition support dietitian.

Andrea's primary focus was on home-start parenteral, or IV, nutrition (PN) and long-term PN management. She loved the relationships she built with patients, their family members, other clinicians and proAndrea Taylor viders. Through these relationships, she became intimately aware of the challenges these patients face, as well as the need for further support and advocacy.

Her passion for helping people led her to the Oley Foundation, where she is eager to collaborate with industry leaders and other clinicians to improve the quality of life of home tube feeding and PN consumers.

(518) 262-5079 • LifelineLetter — 7

Oley News

On Your Behalf

Nutrition Support

that puts the patient first Gillian was diagnosed with gastrointestinal motility disorder and gastroparesis leading to long-term, severe malnutrition. Starting on parenteral nutrition was her turning point.

“

Today my labs are perfect and my cognitive function is back to normal. My weight has stabilized and I’m back to living life. I owe so much of my progress to my Option Care Health team.

”

Before

After

Explore the many benefits of Restore+ Compassionate team of clinicians • Robust patient education • Prompt response to patient needs 24/7/365 • Easy ordering and reliable delivery of supplies

For more information, call 866.827.8203 or visit optioncarehealth.com Option Care Health locations are ACHC accredited.

HHA numbers are available to view at optioncarehealth.com. ©2022 Option Care Health, Inc. All rights reserved. 22OCH07108

We ended last year and began 2023 with confidence, energy and enthusiasm. I am thrilled! With Beth Gore in the leadership position and a strong strategic plan in place, we will continue to be dedicated to your needs. We know you will appreciate the positive vibe that flows through the Oley Foundation as we launch new initiatives and modernize efforts. You will witness staff with revised titles and responsibilities and get acquainted with new additions to the Oley team. I know you will enjoy their contributions as we move through this year, especially as we celebrate the first forty years of Oley!

We Grow: Oley welcomed 1,741 new members in 2022, bringing our total year-end membership to 27,395 worldwide.

We Appreciate: Strong financial support from industry and individuals last year provided the backbone for what we do. These commitments showcase your appreciation and fuel our motivation to remain the trusted resource for members. Thank you!

We Educate: • The annual conference was held virtually in August, with 429 in attendance and, as of early January, 2,981 views of the recordings. See oley.org/2022Conference Presentations.

• Jammin’ Jammies—traditionally held in person at our annual conference— was held virtually and featured games and goody bags.

• A mini meeting was held virtually in April, with 192 in attendance and 552 views of the recordings, available at oley. org/oleyminimeetings.

• Four webinars were held throughout the year, with an average attendance of 119 and, as of early January, a total of 575 views of the recordings, available at oley. org/webinars.

• Oley organized a symposium, Perspectives on HPN Through Past Decades and into the Future, at the annual meeting of the American Society for Parenteral and Enteral Nutrition (ASPEN), with approximately 300 attendees.

• We published five issues of the Life-

8 — LifelineLetter • (518) 262-5079

lineLetter in 2022. Moving forward we will shift from print to a digital format. This change will allow readers to enjoy a more user-friendly format, where they can flip from one page to the next easily and which will contain live links. This change will help us preserve resources (printing and postage costs) and pass along information in a more timely manner. To request a paper copy, contact Cathy at (518) 262-5079.

We Respond: We continue to respond to hundreds of “requests,” helping members overcome medical issues, solve quality of life challenges, and more. It is a win-win when we can connect people with others to help them navigate issues such as not being able to eat or preparing yourself and/or your child to enter school or transition to college life. We remain grateful for those who are willing to share their knowledge and experiences to help others. A secondary benefit is that friendships form.

We Serve: Staff continues to serve on the advisory board of LIFT-ECHO (Learn Intestinal Failure TeleECHO) launched by Dr. Kishore Iyer. LIFT-ECHO is an “online community of medical professionals dedicated to supporting the treatment and management of intestinal failure patients” (liftecho.org). Professionals learn from one another by discussing issues specifically related to intestinal failure and management of HPEN. A list of didactic lectures can be found at liftecho.org/web/resources/ didactics-archive. If your physician is challenged by your issues and concerns, they might want to tap into this resource.

We Collaborate: • Oley staff and members participated in the spring and fall Public Policy Forums organized by the Digestive Disease National Coalition (DDNC). The spring forum included visiting with congressional staff virtually.

• An Oley staff member serves on the executive committee of the DDNC board and on the board of the National Board of Nutrition Support Certification, an independent certification board founded by the ASPEN to help improve care for home nutrition support consumers.

Winter 2022/23

Oley News .• Oley staff and members participated in the Patient and Providers for Medical Nutrition Coalition’s day of action, reaching out to their representatives and showing support for the Medical Nutrition Equity Act. We Promote: We helped to coordinate an FDA Patient Listening Session to promote a better understanding of short bowel syndrome. At this session, patients and caregivers shared what it is like to live with short bowel syndrome and home IV nutrition and addressed questions from the FDA. Over sixty FDA representatives attended this virtual event. More at oley.org/FDA_Listening.

We Contribute: We contributed to a paper in the Journal of Parenteral and Enteral Nutrition, written by experienced nutrition support professionals who often present at Oley events. The article that begins on page 1 is adapted from this paper.

We Network: Recognizing the importance of peer-to-peer support, we help provide meaningful connections, information, and support to Oley members. Oley and Oley Ambassadors have been facilitating virtual support group meetings. There are groups for adults, caregivers, and parents; one for young adults; and one for children (Kidz Klub). The groups tend to be small, and there is time for everyone to ask questions and participate.

Kidz Klub met virtually three times, with five to te n children attending each session—the perfect size for anything from science experiments to scavenger hunts.

We Expand and Enhance: The heart and soul of Oley, the Ambassador program enjoyed growth, both in number and in knowledge. At the end of 2022, we had sixty Ambassadors in twenty-five states and nine countries.

Several virtual training and social sessions for the Ambassadors were coordinated, a new handbook was developed, and we welcomed several new Ambassadors. Learn more at oley.org/ ambassadorsmain.

We Look Forward: • To launching our Find a Healthcare Professional directory.

This tool is designed to help patients, families and clinicians locate professionals involved in home IV nutrition and tube feeding and related fields. We know Oley members will benefit from this service.

• To delivering the updated Enteral Donation Program (formerly known as the Equipment Exchange Program). Oley staff and volunteers handled an estimated average of thirty-five calls per week about the EE, with people calling to donate or request items.

On top of this, approximately 600 items were listed for donation through our online forms, and over 679 were requested.

• To meeting your expectations. Please let us know what is important to you. Contact us at oleyfoundation@gmail.com, oley. org/contactus, or (518) 262-5079.

• To seeing you in St. Louis!

—Joan Bishop, Executive Director Emeritus●

Innovations that connect Fresenius Kabi Nutrition helps you connect critically and chronically ill patients to parenteral nutrition (PN) products so they can flourish—from hospital to home.

Learn more about our innovations that nourish:

www.FreseniusKabiNutrition.com

©2022 Fresenius Kabi USA, LLC. All Rights Reserved. | 2293-NP-05-05/22

Volume XLIII, No. 5 FSK-PN-460_PortfolioJournalAd_4C_3.66x9.315.indd 1

(518) 262-5079 • LifelineLetter — 9 11/15/22 6:45 PM

Oley News

Oley Foundation Strategic Vision 2023–2025 Beth Gore, Executive Director

On November 17–18, 2022, the Oley Foundation Board of Trustees and advisors gathered in Nashville, Tennessee, for strategic planning for 2023–2025. In attendance were Officers: Kelly Tappenden, President; Shirley Huang, Vice President; Steve Atkinson, Treasurer; Vanessa Kumpf, Secretary; Directors: Lisa Epp, John Mahalchak, David Mercer, Sharon Rose; Advisors: Timothy Arends, Manpreet Mundi; and Executive Director: Beth Gore.

We looked at where Oley started, where Oley is, the current and future state of home nutrition support and what Oley’s role should be. The Board updated our tagline, mission, vision and values, as follows.

Tagline Oley. A home nutrition therapy community and advocacy group. While the Board liked the previous tagline of “Help along the way,” they felt it didn’t convey WHO the Oley Foundation is. You will start to see this new tagline incorporated across our platforms.

Mission To enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community and innovation. A 501(c)3 charitable organization like Oley exists to fulfill the mission. As you can see, the mission components are our four strategic initiatives. This is the WHAT we do. We are committed to this mission and value your collaboration towards it as well.

This is the HOW we will do what we do. We commit to demonstrating these values in everything we do.

Key Strategic Initiatives With input from various stakeholder groups, the Board outlined the key strategic initiatives for 2023–2025. Starting in 2023, you will see increased efforts and new or improved programs surrounding each of these strategic initiatives.

Advocacy Be the voice to, of and for the people on home nutrition therapy and their caregivers. Oley has always and will continue to advocate directly one on one to members. This includes the following.

Individual Advocacy: • Oley Ambassadors. The Oley Ambassador’s main goals are to offer peer-to-peer support to other home intravenous and/or tube feeding (home parenteral and enteral nutrition, HPEN) consumers and caregivers; to help Oley Foundation outreach and support efforts; and to heighten awareness of Oley resources in their geographic area, social networking community, clinical circles, etc.

• Information requests. Our members know they can count on us when they have questions. We receive these requests from phone calls, emails and social media. We do our best to answer the question or connect the member with appropriate resources.

• Enteral Donation Program. Oley temporarily has this program on pause but hopes to have it back up and running very soon.

Vision Oley envisions a world where patients are united, supported and empowered to thrive on home nutrition support. This is the WHY we exist. We commit to keeping this vision front and center for all the decisions we make as Board and staff.

National Advocacy: Oley’s Board expanded the area of advocacy to include national advocacy as well. While Oley has contributed over the years to this, the Board agreed it was vital for us to create a National Advocacy Task Force which will establish goals, priorities and initiatives.

Values • Trustworthiness—We will be credible, transparent and act with integrity.

• Compassion—We will keep the voice of the patient central to our mission.

• Inclusivity—We will be accessible and accountable to all stakeholders in the nutrition support community.

• Proactivity—We will promote improvements in the field based on patient priorities.

Education Create and disseminate patient-focused best practices for home nutrition support. Oley has always been and will continue to be strong in the area of education. This includes: • Annual conference—two- to three-day in-person and virtual meeting. Oley 2023 will be in St. Louis on June 27–30.

(Visit oley.org/Oley2023 to learn more and register.)

• Regional meetings—half- to three-quarter-day in-person

10 — LifelineLetter • (518) 262-5079

Winter 2022/23

Oley News

and virtual meeting. Next one to be announced soon. We plan to hold one to three per year.

• Mini meetings—half- to three-quarter-day virtual meeting. (Visit oley.org/Enrichmentprograms to learn more about our next meeting and to register.) We plan to hold two to four per year.

• Webinars—one- to two-hour virtual meeting. (Visit oley.org/Enrichmentprograms to learn more about our next webinar and to register.) We plan to hold about six per year.

• Newsletter—starting in 2023, you might notice we are going quarterly and fully digital with interactive links. For those who would still like to receive the newsletter in paper form, call (518) 262-5600 or email oleyfoundation@gmail.com.

• Website—we are currently looking into upgrading our website.

Community Unite, support and empower everyone involved in home nutrition therapy in an inclusive, diverse and accessible environment.

Oley has over 27,000 members who are consumers, caregivers, healthcare professionals, members of related industries and members of associations. Oley’s commitment is to better identify, target and communicate more effectively with each member type. We also will be working towards reaching and welcoming new members.

Volume XLIII, No. 5

Innovation Support the patient-centered improvement and evolution of nutrition therapy to enable patients to live the best life possible.

This is a new focus area for Oley. We are working on developing what all this means and entails. Could we partner with smaller companies that were started and run by a nutrition support consumer or caregiver that have a product or service? Could Oley provide a platform for bringing a product to market?

Could Oley create patient-driven research to answer burning questions that would ultimately lead to the evolution of nutrition therapy and how it is delivered?

Get Involved.

• Town Hall. The Oley Board and staff welcome all to attend the Town Hall meeting in person in St. Louis or virtually.

We will be prepared to address the strategic plan in further detail. Details about the meeting to come.

• Comments. We also welcome you to submit your comments. Visit oley.org/contactus or call us at (518) 262-5079.

We’d love to hear from you.

• Volunteer. Would you like to volunteer to help Oley fulfill its mission? Are you interested in helping with any of the details outlined above? Visit oley.org/Volunteer to see ways you might get involved. ●

(518) 262-5079 • LifelineLetter — 11

Consumer Profile Backpacking, cont. from pg. 1

At first, I was in shock (and I still am), but I tried my best not to let the feeding tube change my life—well, as much as possible. I have learned quite a bit in the last few months, and I am sure I still have quite a bit more to learn. There are so many little tricks on feeding!

Backpacking Trial Run I wanted to go backpacking and see how the feeding tube would work during the trip. For this first trip, I went with three friends who know me well and are aware of my transition to becoming a tubie. The plan was a three-day hike. The trail was about seven miles to base camp, at 9,000 feet. It was late fall so it would be cold at night, about 40 degrees.

This was a real experiment for me! I would see how tube feeding by syringe would work in the backcountry, but also experiment with nutrition, hydration, and stoma care. I had much to learn. At home, I have an extremely comfortable setup. I use four syringes at a time, enough for 8 ounces of formula. I have a chair, a bathroom, a sink, plenty of room, and it is warm. The hike was not like this!

Learning by Doing One of the first lessons was the pack weight. I use commercial formula and it is HEAVY! I take seven cartons a day at 8 ounces per carton, which is 3.5 pounds a day. It was simply too much. As an experiment, I brought two days of liquid formula and one day of powdered formulas. I packaged the powdered formula into one-serving ziplock bags. Even the 7 pounds was just too much weight. So, lesson #1: no more food cartons, only powdered food in my backpack. The added benefit of this is less garbage! Fourteen empty formula cartons are a mess and take up space.

Lesson #2: nutrition and hydration. I like being prepared, so for this trip I brought extra syringes and an extra extension set for feeding. (I also should have brought a spare replacement button [a low-profile type of feeding tube].) This is quite important. If a syringe or tube failed, I would have a backup.

I could live a couple of days without nutrition, but we must have hydration.

I will break down this lesson into two parts: Tube feeding in camp and tube feeding during the hike. Honestly, in camp it was not too difficult. I carry a backpacking chair, so I can be nice and comfortable. I brought a dish and a cup. I would put the syringe and towel in the dish and pour the formula into the cup. While camping I just brought one syringe, saving weight and space. Feeding myself was a bit more complex as I had to refill the syringe four times each feeding. Three arms would make this easier! Afterwards, I washed the syringe with water, then dried and stowed it. Pretty relaxing! I give myself a B+ for camp feeding. One last note, it was COLD at night! Raising my shirt to get access to the feeding tube

was a bit cold. I think a shirt with a strategically placed hole would be a clever idea.

The hiking part was different. It is close to impossible for me to drink by mouth. So, I would stop on the trail, sit on a rock or log, break out the gear, and get a few ounces of fluid down. I did not do it often enough. I just did not want to take the time, even though it only took ten minutes. On the trip out, about five hours, I only stopped once to hydrate. At the end of the day, I was dehydrated. I get a D- for hydration!

Next time I may schedule my hydration stops and not deviate from them. It would also help to put the gear on the outside pocket of my pack, for quicker access. I was stopping, taking off my backpack, taking extension tubing and a syringe out of my backpack, and squirting some water into my tube.

Then I would repack, put my backpack back on, and continue with the hike. With a big pack, this was neither quick nor easy.

I now use a low-profile extension set that lies flat on my stomach. I keep it attached all day during the hike. I keep a syringe in my pocket. To hydrate, I just stop, and, with my pack still on, grab the syringe, get some water, and Steve enjoying the squirt it in! I can easily get 4 mountains. or 6 ounces in quickly.

My last lesson is stoma cleanliness. As we know, there is a difference between sterile and clean. We do not need to be sterile with a feeding tube, but we should be clean. I was good with my feeding gear but really ignored my stoma…. A mistake! It was pretty crusty at the end of the trip. It would have been so simple to heat up water and nicely wash my stoma area. I just did not do it. Next time I will not forget.

For Next Time In conclusion, it was a great trip. It went mostly well; a couple of things need improvement. I plan to work on the powdered food. This is necessary. This will save several pounds per day in pack weight and volume in the pack. In camp I will try to even take more time to feed. I will try to make feeding more relaxing, as opposed to a quick feed. I will heat up water and clean my stoma every morning and night. It’s easy to do and so important. Finally, I will make scheduled stops while hiking to hydrate.

I plan on going camping in the winter, another experiment.

And I look forward to many more days of backpacking with my newfound skills! ●

12 — LifelineLetter • (518) 262-5079

Consumer Profile

Winter 2022/23

CommunityMedical News Update

2023 Oley Awards These Oley awards recognize those in our community who have earned our respect, inspired us, and taught us. Awards will be presented at the 2023 Oley Consumer/Clinician Conference.

Winners will receive a $750 grant to attend the meeting, and will be spotlighted in the LifelineLetter. Recognition is given to all nominees. Nominate someone today at oley.org/nominations.

(Please notify the person that you are nominating them for the award.) Deadline for nominations is March 17.

Distinguished Clinician Award • Healthcare professional (physician, nurse, dietitian, etc.) practicing in the field of HPEN or related field (psychology, interventional radiology, pain management, etc.)

• Sets an example by promoting innovation in nutrition therapy, or by advocating for someone in their care.

• Demonstrates a willingness to give of themselves to educate, empower, and improve the quality of life for HPEN consumers Caregiver Extraordinaire Award • Current caregiver/supporter to an HPEN consumer of 1 year or longer • Any age • Demonstrates patience, compassion and dependability, and provides effective care in helping a consumer live more fully on HPEN Rising Star Award • Current HPEN consumer for 1 year or longer • 18 years of age or younger • Shows a positive attitude in adapting to life on therapy which encourages and inspires others Unsung HPN Hero Award • Current home parenteral nutrition (HPN) consumer for 1 year or longer • 19 years of age or older • Demonstrates courage, perseverance, and a positive attitude in dealing with their illness and living a more fulfilling life on HPN

Home nutrition support tailored to your needs • Nutrition, nursing and pharmacy expertise • Support for you and your caregivers • Optum Intestinal Rehab program at home Our award-winning nutrition team is here for you.

Visit optum.com/pn Email hpninfo@optum.com Call 1-866-480-2959 © 2022 Optum, Inc. All rights reserved. OPT7785945_221201

Unsung HEN Hero Award Sponsored by Nestlé Health Science • Current home enteral nutrition (HEN) consumer for 1 year or longer • 19 years of age or older • Demonstrates courage, perseverance, and a positive attitude in dealing with their illness and living a more fulfilling life on HEN Volume XLIII, No. 5

(518) 262-5079 • LifelineLetter — 13

Medical Update Characteristics, cont. from pg. 1

to the people affected—so these, too, can be addressed.

Yet it has been difficult to find answers to these kinds of questions, and to get a picture of what CIF patients experience in the United States healthcare system. There is no central patient registry and no mandated reporting system. Two studies were conducted that helped establish how many people in the United States were on HPN, or the “prevalence” of HPN, in the 1990s and in 2013.

Using data from Medicare and the North American Home Parenteral and Enteral Nutrition Registry (which has long been defunct), Oley Foundation co-founder Dr. Lyn Howard and colleagues estimated that in the United States in 1992, 40,000 people (157 per million) received HPN (Howard L, Ament M, Fleming CR, Shike M, Steiger E. Current use and clinical outcome of home parenteral and enteral nutrition therapies in the United States, Gastroenterology.

1995;109[2]:355-365). More recently, Dr. Manpreet Mundi and his colleagues, using data from Medicare and from three of the largest durable medical equipment (DME) providers in the United States, estimated that in the United States in 2013, 25,011 people (70 per million) received HPN. In this most recent study, Drs. Manpreet Mundi, David Mercer, Kishore Iyer, and others conducted an analysis of an open, deidentified insurance claims database to look at the current state of CIF management in the United States.

Joan Bishop, then Oley Foundation Executive Director (and now Executive Director Emeritus), also contributed to this project.

Dr. Mundi et al looked at insurance claims from October 2012 to June 2022 and identified patients with “at least two PS [parenteral support] prescriptions within six [consecutive] months and a relevant diagnosis.” They then analyzed the “prevalence and characteristics of patients with CIF, their travel distance to receive PS prescriptions, and the distribution of PS providers and their prescribing history” (page 1). This article shares their findings, as presented in their paper, “Characteristics of Chronic Intestinal Failure in the USA Based on Analysis of Claims Data.” All quotes and citations used here are taken from this paper.

The Claims Database “The IVD database is a national administrative open claims database consisting of longitudinal data of 290 million unique deidentified US patients regarding pharmacy claims, physician offices medical claims, and hospital claims, including patients with multiple years of PS claims. It covers all payment types, including…commercial plans, Medicare (including Medicare Advantage), Medicaid, cash, and assistance programs. It complies with the Health Insurance 14 — LifelineLetter • (518) 262-5079

Portability and Accountability Act” (page 2).

Not all claims made in the United States are included in the IVD database. Mundi et al cite this as one of the limitations of the study, noting, “This may affect especially the Western region of the United States, as claims covered by one of the large insurers in the Western states are not included in the database” (page 7).

About the Patients with CIF Dr. Mundi and his colleagues identified an estimated** 24,028 CIF patients, of all ages, in the database. Based on population estimates from 2012 to 2020, this translates to 75 CIF patients per million US inhabitants. This figure (75 per million) represents the estimated prevalence of CIF patients in the United States.

Figure 1 shows the number of CIF patients for each state per million individuals in the database. The states with the highest number of patients per capita were Maine, Pennsylvania, and New Jersey. The states with the lowest number were Vermont, Mississippi, and Louisiana.

Figure 1. Number of patients with CIF for each state per million individuals in the claims database. Figures 1 and 2 from Mundi et al, Characteristics of chronic intestinal failure in the USA based on analysis of claims data. J Parenter Enteral

Nutr. 2022:1-9, used with permission of the publisher.

The database included CIF patients of all ages (see table 1).

Sixty percent of CIF patients in the adult age groups were women. “Medicare was the most important provider for patients 65 years or above and Medicaid was the second most important provider in the pediatric age group, as would be expected from the eligibility criteria of the two programs” (page 5). (See table 2.)

Location data was available for 16,449 of the CIF patients identified in the database. Looking at the distribution of the average distance these patients “traveled outside of their ZIP3 area to receive PS prescriptions indicates that approximately half of the patients traveled between 10 and 100 miles for Winter 2022/23

Medical Update person” (page 7). These are cited as limitations of the study.

Table 1. Age ranges of CIF patients identified in database

Table 2. Health insurance coverage of CIF patients identified in database

About the PS Providers Using the providers’ zip codes, Dr. Mundi et al created a map that shows the location of providers in the United States who prescribed PS for each of their patients for at least 12 months (see figure 2). There are many PS providers in the East, especially in the Northeast, “where hubs with providers prescribing for large patient populations were co-located with large population centers” (page 3).

There were more providers, more densely located, in the Northeast than in any other part of the country.

Figure 2. Geographic location associated with PS providers in the US. The color represents the number of patients each provider had PS interactions with that were at least 12 months apart. Each dot represents one physician who signed orders for PS prescriptions at the respective geographical loca-

Table 3. Geographical distribution of CIF patients identified Oley News in database

tion associated with their ZIP code. Providers with higher patient counts took priority over providers with lower patient counts at each ZIP location.

Table 4. Distance traveled by CIF patients identified in the database in the different regions of the US

their PS prescriptions (55%), yet a notable proportion traveled between 100 and 1,000 miles (33%)….Of note, patients in the pediatric age group (0–17 years of age, n = 1,667) traveled further on average (median of 77 miles) than adult patients (n = 14,942, median of 62 miles)” (page 5).

The distances traveled varied quite a bit depending on which region of the United States the patient lived in. Looking at median miles, patients living in the West traveled the furthest to receive their PS prescriptions. Those in the Northeast traveled the least. (See table 4.)

The authors of this study note that they “used the center of the patients’ ZIP3 area code, which is not identical with the patients’ exact location. Furthermore, only the current location of the patient and physician were available, which is not necessarily their location at the time of the PS interaction….In addition, some of the PS interactions may have taken place via telehealth solutions instead of in Volume XLIII, No. 5

Many of the providers in the Midwest, South, and West managed fewer numbers of PS patients (1 to 4). The exceptions were in “high prescriber hubs,” such as Rapid City, South Dakota, and Salt Lake City, Utah, where there was at least one provider writing prescriptions for 20 or more CIF patients.

Looking at how many PS orders providers signed for different time periods of u p to 12 months showed that “the number of physicians who had PS interactions with their patients generally decreased over time, irrespective of the number of patients they were managing. There was a relatively high number of physicians (n = 21,004) who signed orders for at least two PS prescriptions for a small number of patients with CIF (1 to 4 patients) over a relatively short period of time (i.e., 2 months). This number dropped by 47% over 12 months, indicating that only a little over half (n = 11,205) of physicians still prescribed PSfor their individual patient or small patient group after 1 year.

“Considerably fewer physicians signed orders for at least Characteristics, cont. on pg. 16

(518) 262-5079 • LifelineLetter — 15

Medical Update Characteristics, cont. from pg. 15

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two PS prescriptions over at least 2 months for 5–9 patients with CIF (n = 648) and even fewer for 10–19 and 20 or more patients with CIF (n = 176 and n = 83, respectively). …After 12 months, only 37% of physicians with 5–9 patients (n = 237), 44% of physicians with 10–19 patients (n = 78), and 33% of physicians with >20 patients (n = 28) still prescribed PS for their patient pool.”

A large percentage of providers signed PS prescriptions for one or a small group of patients over a short period of time. “Often, these prescriptions are being guided by DME [durable medical equipment or home care company] providers who are delivering PS to patients, as many PS prescriptions have the ability to have DME providers actively manage PS. Although the DME providers may be managing PS for a significant number of patients, they are not able to provide wholistic CIF care for individual patients.” Only a few physicians (n = 28) signed PS orders for 20 or more patients long term (for 12 months), "presumably indicating more stable patient populations at well-established medical centers specializing in the care of patients with CIF” (pages 5–6).

"Even though PS orders were signed by providers who managed a small number of patients, presumed to be primary care providers, patients still traveled up to 100 miles to receive their PS prescriptions. This indicates that, although patients were able to have their PS orders filled locally, they often had to travel considerable distances to visit with the provider who wrote the original PS prescription. A large proportion of patients traveled >100 miles, indicating a substantial inequality in healthcare coverage throughout the country….There was less coverage in the rural areas of the Midwest, South, and West, where the majority of provid-

16 — LifelineLetter • (518) 262-5079

ers prescribe PS for individual patients or small patient groups. For this reason, patients in rural areas presumably had to travel considerably longer distances to receive PS prescriptions than their urban counterparts” (pages 6–7).

Traveling with CIF can be difficult.

In addition to having to travel with supplies necessary for the administration of PS, patients with CIF often have frequent need to use a restroom, and would have to find public restrooms along the way. Also, traveling longer distances means more time away from work and other responsibilities, and higher out-of-pocket expenses.

Conclusion Mundi et al state, “Despite advances in the management of CIF, including dietary interventions, oral rehydration solutions, antimotility agents, and novel drugs targeting intestinal mucosal growth, the fragmentation of care for CIF in the United States seems to be worsening over time” (page 7). From 2012 to 2020, they noted a decrease in the number of doctors with long-term prescribing history.

They suggest that the following factors may be contributing to this decline: • Fewer providers developing an expertise in the management of CIF. It is possible, too, they note, that primary care providers may sign the initial PS prescription, then refer the patient elsewhere as their condition progresses or stabilizes.

• A lack of physicians developing an expertise in nutrition. They note, too, that in medical schools and residency programs, there is a decline in nutritionfocused education, with fewer programs requiring a dedicated nutrition course.

• The current reimbursement model for healthcare. Under the current system, health insurance plans “often reimburse significantly more for surgical interventions or procedures, such as endoscopy, than for office visits focusing on disease prevention. In this Winter 2022/23

Medical Update reimbursement model, many physicians tend to focus their practice on management of acute issues rather than chronic care, especially oversight of PS prescription” (page 7).

• The lack of a dedicated CIF code in the two commonly used collections of standardized codes representing medical procedures, supplies, products and services (HCPCS, the Healthcare Common Procedures Coding System, and ICD, International Standard Classification of Diseases and Related Health Problems). “Over decades, this situation has complicated clinical practice and forced healthcare providers to use a variety of other diagnostic and treatment codes for their patients with CIF. Appropriate codes for intestinal failure and short bowel syndrome have been added to the 2022 release of the ICD-11 and are under discussion for the ICD-10-CM for use in the United States as well.

[Dr. Mundi and the other authors of the paper] hope that future iterations of the ICD and HCPCS applicable in the United States will include these codes to facilitate management of, and reimbursement for, patients with CIF. The lack of a uniform coding system to date has not only limited an assessment of the true prevalence of CIF in the United States, it has also hampered analysis of healthcare resource utilization and other characteristics associated with CIF, which would enable the establishment of appropriate regulations and frameworks for its management” (page 7).

Dr. Mundi et al conclude, “Healthcare disparities for patients with CIF have likely been obscured by the lack of CIF-specific diagnostic and procedure codes, obliging providers to code [to record a diagnosis for insurance purposes] for their patients under other codes. Effective policy changes, including centralized care, revision of reimbursement models, and expan-

sion of nutrition-focused education in addition to the newly introduced International Classification of Diseases codes, are needed to provide the best care for patients" (page 1). *Chronic intestinal failure (CIF) has recently been defined as a “reduction of gut function below the minimum necessary for the absorption of macronutrients and/or water and electrolytes, such that intravenous supplementation is required to maintain health and/or growth.” “Intravenous (IV ) supplementation,” or PS, refers to IV fluids and/or parenteral nutrition. (Pironi L, Arends J, Bozztti F, et al. Home Artificial Nutrition & Chronic Intestinal Failure Special Interest Group of ESPEN. ESPEN guidelines on chronic intestinal failure in adults. Clin Nutr 2016;35(2):247-307) **The number is an estimate because the claims database contains duplications. If a patient moves from one state to another or changes their name, for example, data about that patient could show up twice. This is considered one of the limitations of the study. ●

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Volume XLIII, No. 5

(518) 262-5079 • LifelineLetter — 17

Oley News

Thank You Corporate Partners!

Please join Oley in thanking the companies that provide unrestricted grants to support the foundation year round.

Learn about our most recent corporate contributors in their own words below. For a complete list, go to oley.org/ PartnerShowcase.

Takeda Pharmaceutical

Takeda is a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to discover and deliver life-transforming treatments, guided by our commitment to patients, our people and the planet.

Learn more at takeda.com.

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Abbott

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Cardinal Health

Cardinal Health is a distributor of pharmaceuticals, a global manufacturer and distributor of medical and laboratory products, and a provider of performance and data solutions for health care facilities. With fifty years in business, operations in more than thirty countries and approximately 46,500 employees globally, Cardinal Health is essential to care. Information about Cardinal Health is available at cardinalhealth.com.

Option Care Health

Option Care Health is the nation’s largest independent provider of home and alternate site infusion services. Our 4,200+ clinicians work compassionately to elevate standards of care for more than 240,000 patients annually with acute and chronic conditions in all fifty states. Through our clinical leadership, expertise and national scale, Option Care Health is improving the infusion care experience for patients, customers and employees. To learn more, please visit our website at OptionCareHealth.com.

nutritioncare.org/conference

18 — LifelineLetter • (518) 262-5079 ASPEN23_Oley_3.66x9.315.indd 1

11/21/22 8:29 AM

Winter 2022/23

Contributor News Donor News

Notable Individual Gifts

Among the contributions we receive, there are always several dedicated to those who have inspired the donor. We share this list of honorees below. We are grateful for the following gifts received from October 15 to December 29, 2022.

Memorials: In memory of Milton B. Abercrombie; Nancy Backinger; Gail Brenenstuhl; Pat Brown; Ann DeBarbieri; Charlie Eidem; Natalie Ginsburg; Irmagail Gordon; Linda Gulden; Marjorie, Arthur, and Albert K. Harshbarger; Gloria Harvey; Alicia Hoelle; Joyce Hydorn; Larry Karacki; Peter Joseph Michalski on his 17th birthday; Jonathan Miller; Clarence (“Oley”) Oldenburg; Eleanor Orkis; Mary Patnode; Kenneth Rosenhek; “precious angel baby Freeman Ellis Staley”; Bobbiejo Winfrey; “my wonderful father, Jim Wittmann” Tributes: In honor of "all of the HPEN consumers and their caregivers who share their journey so that care can be improved”; Joan Bishop; Roslyn Dahl; Dr. Lyn Howard; Harlan Johnson, “for the years of assisting in Mary Patnode’s care”; Aidan Koncius; John Mahalchak; Carol Mayer; “Mary Jo’s 32 years on TPN”; Larry Mayer; Rachael, Sue, and Eddie Miller; Jeff Nemeth Fundraisers: Facebook birthday campaigns by Alan Buchman, Barbara Eastman, and Julie Morris; Facebook Giving Tuesday campaigns by Joan Bishop and the Oley Foundation; Phil Kellerman’s ongoing political memorabilia fundraiser on Ebay Matching Gifts: Dorsey & Dorsey; Johnson & Johnson; Medtronic Thank you for all gifts and the kind comments we receive throughout the year. Your support overwhelms us and continues to be a source of inspiration.

Oley Horizon Society

Many thanks to those who have arranged a planned gift to ensure continuing support for HPEN consumers and their families. Learn how you can make a difference by calling (518) 262-5079 or visiting oley.org/plannedgifts.

Felice Austin Jane Balint, MD John Balint, MD Joan Bishop Ginger Bolinger Pat Brown, RN, CNSN Faye Clements, RN, BS Katherine Cotter Jim Cowan Rick Davis Ann & Paul DeBarbieri David & Sheila DeKold Dale & Martha Delano Tom Diamantidis, PharmD Gail Egan, MS, ANP Selma Ehrenpreis Herb & Joy Emich Jerry Fickle Don Freeman Linda Gold Linda Gravenstein Deborah Groeber The Groeber Family

Valerie Gyurko, RN Alfred Haas Shirley Heller Alicia Hoelle Jeff & Rose Hoelle Lyn Howard, MD William Hoyt Portia & Wallace Hutton Kishore Iyer, MD Doris R. Johnson Darlene Kelly, MD, PhD Family of Shirley Klein Jim Lacy, RN, BSN, CRNI Robin Lang Joyce Madden Hubert Maiden Laura Matarese, PhD, RD, LDN, CNSC, FADA, FASPEN Kathleen McInnes Michael Medwar Meredith Nelson Nancy Nicholson Rodney Okamoto, RPh,

& Paula Okamoto Kay Oldenburg Harold & Rose Orland Judy Peterson, MS, RN Clemens Pietzner Beverly Promisel Abraham Rich Wendy B. Rivner Roslyn & Eric Scheib Dahl Susan & Jeffrey Schesnol Doug Seidner, MD, FACG, CNSP Judi Smith Steve Swensen Cheryl Thompson, PhD, RD, CNSC, & Gregory A. Thompson, MD, MSc Cathy Tokarz Eleanor & Walter Wilson Marion & Larry Winkler James Wittmann Patty & Darrell Woods Rosaline Ann & William Wu

Volume XLIII, No. 5

Oley Corporate Partners

The following companies provide over one-half of the funds needed to support Oley programs. Corporate relationships also strengthen our education and outreach efforts. We are grateful for their strong commitment.

TITANIUM LEVEL PARTNER ($150,000+) Takeda Pharmaceutical GOLD MEDALLION PARTNER ($50,000+) 9 Meters Biopharma SILVER CIRCLE PARTNERS ($30,000+) Coram / CVS specialty infusion services Zealand Pharma BRONZE STAR PARTNERS ($20,000+) Abbott Baxter International Inc. Cardinal Health, Inc. Fresenius Kabi USA Kate Farms Option Care Health Optum Infusion Pharmacy VectivBio BENEFACTOR LEVEL PARTNERS ($10,000+) Avanos Nestlé Health Science PATRON LEVEL PARTNERS ($5,000+) Amerita, Inc. B. Braun Medical Inc. MOOG Medical Nutrishare, Inc. Real Food Blends Soleo Health

(518) 262-5079 • LifelineLetter — 19

LifelineLetter

The Oley Foundation Albany Medical Center, MC-28 99 Delaware Avenue Delmar, NY 12054

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Contact us at (518) 262-5600 or oleyfoundation@gmail.com.

Celebrating 40 Years—We want to hear from you!

On February 2, we will gather in Albany, New York (see page 6) and virtually on Zoom, with Dr. Lyn Howard, Clarence “Oley” Oldenburg’s daughter Teresa, staff and friends to celebrate our 40th anniversary with the Oley Foundation community. We will remember the days in 1983 when Bill Oldenburg donated the seed money, attorneys and advisors prepared the framework, a Board of Trustees was coordinated, the mission was developed and the foundation of what would guide Oley forward was underway.

An important part of celebrating will be learning from you, the true recipients of our efforts. We will be celebrating all year long, so please help us salute the past 40 years by creating brief videos, preparing statements, or joining us live on Zoom on February 2—to showcase how Oley Foundation efforts have helped you and/or your loved one live a fuller life. If you need help or have questions or materials to send, write Joan Bishop at bishopj@amc.edu or call (518) 451-6557 or the Oley office at (518) 262-5079.

I am grateful that what I have learned from Oley has helped me live my life more fully.

—Katie M.