Spring 2023 LifelineLetter

LifelineLetter

SPRING 2023

IN THE NEWS

Home Infusion Pharmacy Closures and Nutrition Product Shortages

MaryAnn performing with LakePoint Duo in October 2022. Photo by David Hutchison

Feeding Her Body with HPN, Feeding Her Soul with Music

Consolidation of services by home infusion companies last year and ongoing product shortages related to parenteral and enteral nutrition are affecting Oley members and causing concern in the community. If the need arises, how do you find an alternative provider that best suits you? What do you do when you can’t get the nutrition support products you need to maintain your health?

Turn to page 11 to learn more and get some tips on what you can do.

Donald S. Neblock MaryAnn Neblock, my wife, loves to sing and has a great alto voice that brings the songs in her heart to life. She also has almost no gut left because of nine major surgeries to remove intestine irreversibly damaged by a lifetime of Crohn’s disease. MaryAnn relies on intravenous (IV) home parenteral nutrition (HPN) seven nights a week to sustain her life, maintain her health and enable her to live a full, rewarding life.

MaryAnn is in her seventeenth consecutive year of HPN. Battling Crohn’s In her youth, MaryAnn studied and performed music, playing

Hammond organ, and singing in school choir and vocal ensembles. In her early twenties, she had a great time singing in a wedding band with me (her then boyfriend), Donald, and two friends. In fact, her (and my) love of performing music was so strong that we played for an hour at our own wedding reception in 1976!

But, by her early twenties, Crohn’s disease was already starting to attack MaryAnn’s intestines, starting a lifetime battle with the disease. Over the decades that followed, none of the medical therapeutics tried were successful in containing the disease’s onslaught. In 1999, her

first major abdominal surgery was undertaken to remove irreversibly damaged regions of small bowel. After undergoing eight more surgeries, with her last one in 2018, MaryAnn was left with only about 80 centimeters of remaining small intestine, no colon, an ostomy, and profound short bowel syndrome (SBS) requiring nightly HPN. Mercifully, MaryAnn’s current biologics therapy has kept her Crohn’s at bay since she started the medicine in 2016 and has preserved her remaining intestine, little as it is. MaryAnn has been on HPN support since 2006, infus-

The Oley Foundation is a home nutrition therapy community and advocacy group.

continued on page 7

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LifelineLetter

Spring 2023 • Volume 44, No. 1

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 of Advocacy: 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, FASPEN 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 GeorgeThiemann, RN, CNS; Kathleen Gura, PharmD, BCNSP, FASHP, FPPAG, FASPN; Jocelyn Hill, MN, RN, CVAA(c), OCN,CRNI,VA-BC; Joy McVey Hugick; Kishore Iyer,MBBS, FRCS, FACS; Swapna Kakani, MPH; Barbara Kapuscinska

Spring 2023

Kelly, MD; Sivan Kinberg, 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.

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 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.

Scan the QR to make your donation today.

Volume 44, No. 1

(518) 262-5079 • LifelineLetter — 3

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.

Enteral Formula Updates PediaSure Harvest and Ensure Harvest Discontinued In late March, Abbott distributed a letter to customers announcing that they will no longer be making PediaSure Harvest and Ensure Harvest.

If you rely on either of these products, the healthcare professional who manages your tube feeding should be able to help you find an alternative product that will work for you. The list of Abbott products that are available as alternatives, provided by Abbott and current as of early April, is below.

Abbott notes that these alternatives are not directly equivalent to the Harvest products. The Pediasure and Jevity products listed below, Abbott notes, “contain milk and soy ingredients” and are “not for patients with soy or milk allergies.” Abbott notes that Vital 1.2 contains milk ingredients, and “is not for patients with milk allergies.”

Discontinued product: PediaSure Harvest (67962) Alternative products: PediaSure® 1.0 cal Vanilla can (67401); PediaSure® 1.0 cal with Fiber Vanilla can (67403); PediaSure® Peptide Vanilla 1.0 cal (67407).

Discontinued product: Ensure Harvest (67964) Alternative products: Jevity® 1.2 (64625); Vital® 1.2 (64828); Vital® 1.5 (64825) A link to the original letter is available on our website at oley.org/Formula_ Shortage_Information.

Products Backordered and Unavailable Abbott has also notified us—as have some of our members—that several of their enteral formulas have been unavailable and are being backordered.

See details in the letters from Abbott posted at oley.org/Formula_Shortage_ Information. We will update these as new information becomes available.

If you rely on any of these products, we repeat the message given above: the healthcare professional who manages your tube feeding should be able to help you find an alternative product that will work for you.

There are also several supply “exchanges” available, where you may be able to find the formula you need. We urge you to ask for the expiration date and an exact description of the product, or a reference number, before you have any product shipped to you. Visit oley.org and click on “Equipment/ Supplies” for the Oley Enteral Donation Program (currently being revised) and a list of other equipment and supply assistance programs.

Please also read the article about shortages on page 11, especially the invited commentaries at the end. If you have experienced shortages and backordered products, please write us. Together our voices are stronger.

The best just got better.

The award-winning Infinity Enteral Feeding Pump now features AUTO PRIME Visit moogmedical.com/best or scan the code below to learn more.

4 — LifelineLetter • (518) 262-5079

Feeding Tube Awareness Week 2023 Oley Ambassador Bethany D’Amico helped get the word out about Feeding Tube Awareness Week this past February. Bethany writes, “The Starbucks that I worked at in Crystal Beach, Ontario, put Feeding Tube Awareness Week on the community board and publicly displayed not only feeding tube myths by Tubies in the United States and Canada, but a QR code customers could scan that took them directly to the Oley website.

I also gave stickers* to my fellow partners.

I found them on Starbucks Community Board Displaying Etsy, and they Information about Tube Feeding have a QR code on the back and facts about feeding tubes. Many of my partners had questions that I had the opportunity to answer, and some customers knew loved ones with feeding tubes.

It was a great way to make connections, bust myths, and spread awareness.” *The stickers Bethany handed out can be found at etsy. com/listing/1370705028/tube-feeding-awarenessweek-1030-class We hope you will join us for next year's Feeding Tube Awareness Week, February 5-9, 2024.

Spring 2023

Oley Teens Support Group Attention Oley Teens and Parents!

Oley is excited to share with you the news of a new virtual support group—for teens ages 13–17 only. Teens who join in will have a safe place to talk confidentially with other teens about living life while on HPEN (home tube feeding or IV nutrition support), with trained and vetted volunteer Oley Ambassador Kelly Baker moderating.

Kelly has felt strongly about starting a group for teens. “Teens already go through so many changes and having a feeding tube or IV nutrition/hydration makes it even harder,” she notes.“Having a teen-focused support group allows them to have a safe space to vent about all of these issues with other teens who understand what Kelly Baker, Teen they are going through and Group Moderator to share tips and tricks that make things such as school and hobbies easier. Mainly, it’s good to know you’re not alone when going through these challenges."

Oley Teens HPEN Virtual Support Group is held on the last Sunday of every month at 6:30 p.m. ET. If your teen is interested in joining the group, email Oley Ambassador Kelly Baker at kellysgotguts@gmail.com to rsvp for the next meeting or to learn more. You may also call the Oley office at (518) 262-5079.

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!

Visit oley.org/Enrichmentprograms for upcoming events. Visit oley.org/oleyminimeetings and oley.org/ webinars for recordings.

Volume 44, No. 1

Have you registered for Oley 2023 yet?

Register today at oley.org/event/ Oley2023.

Reserve your room at the Hyatt Regency St. Louis at The Arch before June 2 for special Oley rates.

Book your reservation at hyatt.com/en-US/group-booking/STLRS/ G-OLEY or call 314-655-1234 and let them know you’re with the Oley Consumer & Clinician Conference.

Visit oley.org/Oley2023 regularly for updates on what we’ve got planned.

In addition to outstanding presentations by experts in the field of home IV nutrition and tube feeding, there will be a fashion show (new this year!), an 80s themed reception to celebrate Oley’s 40th anniversary, our annual walk and silent auction, the exhibit hall, and more.

Want to help out? There’s plenty to do at our Annual Conference and beyond!

Submit a volunteer form at oley.org/ volunteer and someone will reach out to you.

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Wear Your Pump Runway Fashion Show New This Year at Oley 2023 June 28, 7:30–9:00 p.m.

Open to consumers and caregivers of all ages!

A fashion show for HEN and HPN patients living their best life on the go.

How have you adapted your nutrition delivery to fit your lifestyle?

Show off your adaptable clothes, any gear that makes your life easier, or just your favorite outfit.

You must be attending in person to participate. $100 prize for 1st place in each category: Work • School • Beach • On the Go • Most Creative Learn more about the Wear Your Pump Runway Fashion Show and register at oley.org/oley2023.

Questions? Email andrea.taylor@oley.org.

Brought to you with support from

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Spring 2023

Research Studies to Consider The following research studies have been deemed appropriate for home parenteral and/or enteral nutrition consumers by the Oley Research Committee; however, the Oley Foundation strongly encourages anyone considering participating in medical research to discuss the issue with their managing physician before signing up. More information about these and other studies can be found at oley.org/Join_A_study.

Clinical Research Opportunity for Those with an Ostomy or Fistula The REINFUSE Trial is an international, multicenter trial to evaluate the efficacy and safety of The Insides™ System, an investigational device that reinfuses the fluid lost (known as chyme) through an ostomy or fistula back into the lower gut. The purpose of the study is to determine whether the amount of parenteral nutrition you receive can be reduced or stopped when using The Insides System and restore gut health prior to reversal surgery.

The study will have five sites across the United States and five sites in the United Kingdom. Currently, two sites, including Henry Ford and the University of Nebraska Medical Center, are open for enrollment in the United States, with more to follow. The possible risks of this study are similar to those already associated with treatment of the underlying disease and the ostomy/fistula, however, there is always the possibility of unforeseeable risks.

Who can participate?

Participants consist of adults who are 21 years or older with an ostomy or fistula with a top and bottom opening easily accessible for cannulation. Participants also must have a viable lower gut and are currently dependent on parenteral nutrition.

If you enroll in this study: • There is a two to one chance of being randomly put in the study treatment group with the study device compared to the group getting only the standard treatment.

• Participation is sixty days from when you

are assigned to a group.

• Prior to being assigned to a treatment group, baseline assessment such as medical history, a physical exam, blood tests, and questionnaires will be completed.

• Weekly follow-up visits will be scheduled to check progress including blood draws, stoma assessments, parenteral nutrition assessments, and questionnaires.

To learn more about the study and find out if you are eligible, please email info@databean. com.

In the Greater Vancouver Area?

Adult home tube feed users are not accessing community healthcare services in Fraser Health Authority (Greater Vancouver Area, BC, Canada). Rebekah Sandhu, a clinical dietitian at Fraser Health Authority, is leading a research project to learn how to make community healthcare services better for you.

What is required?

One four-hour workshop that includes brainstorming ideas, sharing your opinions, and working with others to create recommendations.

Who Can Participate?

People who use, or caregivers for people who use, tube feeds for nutrition or have in the past, and who live at home.

To Learn More To learn more about the study and find out if you are eligible, please contact Rebekah Sandhu at rebekah.sandhu@fraserhealth.ca.

Volume 44, No. 1

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LakePoint Duo (MaryAnn and Donald Neblock) performing in concert in October 2022.

ing her complete nutritional requirements over twelve hours, seven nights a week, through a verywell-cared-for central venous access device—her central line.

Ongoing medical care and numerous hospitalizations over the decades of her fierce battle with Crohn’s disease occupied MaryAnn’s energy and efforts full time, as, in addition, she raised our two children (both now adults) and maintained our family's household. During those days, returning to her love of singing and playing music was literally impossible. Today, however, the successes of her current biologics therapy resulting in remission of her Crohn’s, her last surgery in 2018, and good health and nutrition from HPN management have opened the door to the possibility of singing and playing anew; MaryAnn has picked up that ball and run with it in a big way!

Back to Music In 2018, MaryAnn joined my legacy folk-rock band from the 1970s, Larry Friends and Family, adding her voice to and enriching the soaring multi-part vocal harmonies that the band features. After MaryAnn joined the band, playing together was initially limited to practices and small gatherings. But, in 2022, MaryAnn sang as a member of Larry Friends and Family in sold-out live reunion performances celebrating the fiftieth anniversary of the band.

MaryAnn and I also play and sing as a musical duo, LakePoint Duo. We started the duo in 2019 to play

for a neighbor’s fiftieth wedding anniversary party and it has been developing ever since. We’ve built a repertoire of more than twenty-five cover songs and, to date, one original of our own composition.

MaryAnn arranges LakePoint Duo’s beautiful twopart harmonies and adds keyboard to the sound of the voices and my guitar, producing an exceptionally rich, full sound that delights audiences. In 2022, LakePoint Duo opened for Larry Friends and Family’s reunion shows, played private events, and headlined its own show at a local coffeehouse.

Many local musicians and singers deal with lots of live performance challenges, including the demands of rehearsals, travel, moving, set-up and break-down of equipment and, of course, jitters. MaryAnn and others like her have the challenges of managing their medical needs on top of the demands of musical performance and other activities above and beyond those of day-to-day life. For example, MaryAnn emphasizes that playing the major reunion shows on two days back-to-back after a couple of weeks of intense rehearsals was extremely exhausting. A huge challenge was finishing a Friday night show, packing up, and driving an hour home to set up that night’s HPN at 1:00 a.m.—then doing it all over again the next day for the Saturday show. But she did it. After these two demanding shows, Sunday brought a quiet day at home with well-deserved rest and celebration of the two great performances!

In both the group and the duo, MaryAnn has received lots of artistic praise for her singing and

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MaryAnn loves the return of music to her life, giving her fulfillment and a sense of completeness. playing. She describes how she loves the return of music to her life, in this way, giving her fulfillment and a sense of completeness. She practices diligently on her own and together with me for LakePoint Duo performances and to expand our repertoire.

As LakePoint Duo, we have even been recording songs in our home studio recording setup to share privately (for now) with family and friends. When a “take” works well and sounds great, it’s a moment of great happiness for her—simply magic—and everything else just “disappears.”

You can ask MaryAnn how she continues day after day, insisting on living the fullest life possible despite the medical adversity life has thrown at her.

She’ll tell you it’s about filling all available space with the things she loves—family, friends, cooking, and now, the return to singing and playing—and then to just do them, making accommodations and finding workarounds for the medical necessities as needed.

Visit our website, lakepointduo.com, for more information about MaryAnn’s music. ▼

Oley Tim Weaver Camp Scholarship Sponsored by Fresenius Kabi, USA, the $1,000 Oley Tim Weaver Camp Scholarship was created to provide youth on home IV nutrition and/or tube feeding (home parenteral and/or enteral nutrition, or HPEN) the chance to experience summer camp, building self-confidence, independence, courage, and creativity in a safe environment.

Applicants must be an HPEN consumer aged 7–18, and qualify for a camp that provides appropriate HPEN medical support. First-time campers will be given first consideration. Applications are accepted on an ongoing basis. For details go to oley. org/campscholarship.

Spring 2023

Oley at DDNC Public Policy Forum 2023

In March, Oley members and staff attended the Digestive Disease National Coalition (DDNC) Public Policy Forum in Washington, DC. We gathered one day to learn about important legislative issues, and broke up into teams the next to visit legislators. While there was no set script and each conversation was different, priorities for the visits included, first, awareness and sharing the patients’ stories, and then asking for support for the Medical Nutrition Equity Act, Safe Step Act, HELP Copays Act, and research funding.

The Florida team inside Sen. Marc Rubio's office. Left to right: Holly Baker, Dr. Patricia Byers, Mrs. Yosef Koelner, Holly Haddad, Lynn Wolfson, Nicole Wright (legislative staff), Mr. Yosef Koelner, Dr. Andrew Ukleja The American Society for Parenteral and Enteral Nutrition (ASPEN) was awarded a DDNC Public Policy Leadership Award for its efforts to get Medicare reimbursement policies regarding home parenteral and enteral nutrition updated. Public Policy Committee members: Wanda Johnson, Dr. Patricia Beyers, Jay Mirtallo, and Jodi Wolff were present to accept the award.

The Pennsylvania/North Carolina team in the halls of the Hart Senate Office Building. In the center are (L to R) Oley members Paula FoiwWashesky, Crystal Killian, Jamie Scali, and Olivia Scali.

Volume 44, No. 1

Meet New Oley Ambassadors!

Would you like to speak with someone who has “been there, done that”? Call an Oley Ambassador.

For a complete list of Ambassadors, visit oley.org or call (518) 262-5079. Note: Ambassadors volunteer to provide peer support for HPEN patients and family members. They are not medical professionals and do not offer medical advice. Please do not contact Oley Ambassadors for solicitation, marketing, or research purposes. Meet our newest Oley Ambassadors, Jaden and Bethany.

Jaden Maynard

Jaden wites, “I’m Jaden.

I am a 23-year-old transgender male and use he/ him pronouns. I started my tube feeding journey in 2019 with a nasogastric (NG) tube and was utilizing it for a few months for weight restoration. In the spring of 2021, after nine different tubes, my pain and nausea had gotJaden Maynard ten worse. After multiple endoscopies and a gastric emptying scan, I was diagnosed with upper intestinal dysmotility and, later, high mast-cell counts throughout my GI system.

“A GJ tube was placed in 2022, which allowed me to feed and drain. A central line was also placed, for hydration and rescue meds (I started with a PICC line and now have a port). I run one 3L bag of fluid daily with some things added, along with IV meds that are given throughout the day when I am home or at work/school. Throughout the last couple years, I have also been diagnosed with and struggled through borderline personality disorder with SI, post-traumatic stress disorder, avoidant/ restrictive food intake disorder, urinary retention, aspiration pneumonia, Wolff-Parkinson-White syndrome, Barrett’s esophagus, and mild dysphagia. I survived septic shock in 2022 with lasting post-sepsis syndrome.

“I have been doing my own central line and feeding tube care since the beginning, including accessing and de-accessing my port. I have been a CNA since 2017 and am employed at the local children’s hospital. I am working on going back to school and hope

(518) 262-5079 • LifelineLetter — 9

to one day be a PICU nurse. I love swimming, rock climbing, slacklining, knitting, sewing, and playing with my cat, Erika. Tube feeding has given me back my life, and despite the pain and frustration it has caused, I am grateful every day for this second chance at life.”

Jaden lives in Seattle, Washington, and can be reached at jadenmaynard@gmail.com or (801) 458-7081.

Bethany D’Amico

Bethany was diagnosed with gastroparesis, colonic inertia, and small intestinal dysmotility in 2018. It wasn’t until 2019 that she found a motility specialist and a surgeon with the skillsets to properly treat her conditions. At 112 pounds and malnourished, Bethany had a nasojejunal (NJ) tube placed in April 2019. In October of that year, she had a gastrostomy (G) tube place, which was changed to a low-profile G tube a month later. She says, “It was a glorious day…until the anesthesia wore off…”

In addition to the abovementioned GI issues, Bethany also has fibromyalgia, Sjögrens syndrome, and POTS—"to name a few!”

Bethany and her husband, she adds. She Michael has a history of endometriosis and in 2012 she created a Facebook page called Endometriosis Online Support Group that now has 7.8 K followers and includes endometriosis specialists in the U.S. and research articles as well.

Bethany can still consume some things by mouth, such as watermelon, ice cream, and hot tea and coffee. Her favorite pastimes include spending time with her husband and cat, traveling and going on outdoor adventures, watching Netflix, going to the gym, and spreading awareness for the Oley Foundation. She also loves meeting new people, so if you would like to video chat or meet at a local coffee shop, feel free to contact her!

Bethany lives in Bethel Park, Pennsylvania, and can be reached at BethanyDAmico14@gmail.com or (724) 986-3144. ▼

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Spring 2023

Opportunities to Help the Oley Foundation

Whether you can join us at the Oley Annual Conference in St. Louis, Missouri, June 27–30, or not, we welcome your help with raising awareness of, and funds to support, Oley Foundation programs. Opportunities include participating in the annual Walk and Roll-a-thon—or sponsoring someone else—or helping us gather items for the silent auction. There are also other opportunities to help year ‘round!

The Oley Walk and Roll-A-Thon

Join us for the Oley Walk and Roll-a-thon at Oley 2023 in St. Louis, Missouri—or, as you’ve done for the past three years, join us in spirit while you walk and roll in your hometown!

Wherever you are, you pick the pace and the distance that suits you.

Get Your Family and Friends Involved!

Thanks to your help, this event has been a very successful fundraiser, netting thousands of dollars for Oley programs.

Consider setting a fundraising goal; newcomers might try for $50, experienced p a r t i c i p a n t s h a v e When we couldn’t meet in person, Oley members downloaded Oley bibs and raised more than $5,000! organized their own walks.

Besides raising funds for Oley Foundation programs, the event helps raise awareness of the issues home IV and tube-fed consumers face and the services Oley offers. Tell your friends, family, and neighbors about the important work Oley does and ask for their support. You can use our pledge sheet, at oley.org/Walkathon2023, to organize contributions, or donors can donate online at oley.org/ donations/donate.asp?id=18713 or by scanning the QR code below (please ask donors to add your name to the form as the walker). Every contribution helps.

At the conference, we will have t-shirts available for all those who have $30 or more of donations in their name.

Can’t Make It? You can still gather support and raise awareness by walking and rolling in your hometown. Organize a group, or take a friend! Download a bib at oley.org/ Walkathon2023. Donations can be made as noted above.

The Oley Silent Auction

The silent auction, held at the Oley annual conference, is another important fundraiser for Oley. It helps offset the costs of the conference. This is a year of celebration—Oley’s 40th anniversary year, and our first in-person annual conference since 2019! Help us make this year’s silent auction the biggest yet.

Please ask your friends, family, and local businesses to donate a new or gently used item or two. You can bring the items with you if you plan to come to the conference, or you may send the items to the Oley office or straight to the hotel. Please consider donating to the auction even if you do not plan on attending. Some hot-ticket items are pieces of art, jewelry, gift cards to chain restaurants, gas cards, and electronics. Consider contributing a basket with specialty items specifically from your home state!

Every item counts, no matter how big or small. Let’s make this year a great success!

Please call the Oley office at (518) 262-5079 or email Mary Wootten at mary.wootten@oley.org for shipping information. Donation request letters (letters that ask businesses to donate and explains how their donation benefits Oley members) can be downloaded from our website at oley.org/Oley2023.

Thank you for your support.

Year ‘Round Opportunities

If you are interested in becoming an Oley volunteer or in learning about other opportunities to share your talents and serve this community, please complete the volunteer form on our website at oley.org/Volunteer.

We look forward to hearing from you!

DONATE TO THE WALK and ROLL-A-THON

REGISTER FOR OLEY2023

Volume 44, No. 1

(518) 262-5079 • LifelineLetter — 11

Home Infusion Pharmacy Closures and Nutrition Product Shortages Vanessa J. Kumpf, PharmD, BCNSP, FASPEN Some of you may have been impacted by or read about the recent closures and consolidation of select home infusion pharmacies. Last year, many consumers of home parenteral nutrition (HPN) and home IV fluid therapy were told by their infusion pharmacy that they would no longer be able to provide the service. It was a scary time of uncertainty for many and has caused some to worry if other infusion pharmacies will also stop servicing consumers of HPN or of home enteral nutrition (HEN or tube feeding). In addition, product shortages related to parenteral and enteral nutrition continue to wreak havoc on a global basis.

Both topics have recently been in the news and warrant a focused informative and constructive discussion within the Oley community. It is the intent of this article to educate you, as a consumer or caregiver, on measures you can take to receive the product and services you need to stay safe.

Home Infusion Pharmacy Closures: What Happened?

In June 2022, many consumers serviced by Coram/ CVS specialty infusion services and Optum Infusion were informed that they would need to transition to another agency to receive HPN and home IV fluid services. Select pharmacy branches were closing, staff positions were being eliminated, and services were being consolidated.

In the case of Coram, a transition team was formed to assist consumers in transitioning to another infusion pharmacy.

This transition occurred over a rapid four- to six-week period, which didn’t allow much time for consumers to evaluate their options. Consumers who were impacted may have tried contacting their home nutrition therapy prescriber for assistance in making this transition, but not all prescribers had the resources available to handle this issue. Social media was another tool used by some to help navigate the transition, with varying degrees of success.

The reason for closures and elimination of services was not provided, but many speculate it was related to increased costs associated with products and labor in servicing consumers of HPN and home IV fluid therapy without a corresponding increase in insurance reimbursement. Many individual PN components have

increased in cost over the past several years for various reasons. Product shortages have often necessitated use of alternative agents that are more expensive. In addition, an FDA initiative that encouraged manufacturers to seek formal approval of previously “unapproved” PN components has resulted in higher cost.

Changes in labor force resulting from the COVID pandemic is another potential factor. It is important to recognize that people receiving HPN often have complex medical needs and an advanced level of knowledge and expertise is required to properly manage their care. This creates additional challenges for infusion pharmacies to maintain the proper workforce when servicing these people.

Finding a New Home Infusion Provider The reality is that at some point, every home nutrition support consumer may be placed in a position where they need to change their home infusion pharmacy or DME company. It may be due to termination of service, but it may also be due to other factors, such as a move out of state, a change in health insurance, or even a concern over quality of service. The question becomes, how do you find an alternate provider that best meets your needs?

Ask for recommendations of other agencies from people you know, such as the doctor or team that prescribes your HPN or tube feeding, or other consumers requiring the therapy. Check with your health insurance provider to ask for a list of available agencies within network, if applicable.

Here are some questions you can ask prospective agencies to help assess their level of quality and clinical expertise: • What clinicians are employed by the agency and what is their level of education and training? Will you as a consumer or caregiver have access to dietitians and nurses in addition to pharmacists? What is their level of experience? Specialty certification in nutrition support is available for pharmacists, nurses, and dietitians and demonstrates at least a minimum level of knowledge in clinical nutrition. This certification includes BCNSP (Board Certified Nutrition Support Pharmacist) and

12 — LifelineLetter • (518) 262-5079

CNSC (Certified Nutrition Support Clinician). Do any of the clinicians have one of these certifications?

• Does the agency serve the geographical area where you live? How will you receive deliveries? What happens if you need an urgent delivery?

• What happens if an urgent issue arises after business hours? Is there a clinician available twenty-four hours a day, seven days a week to address these issues?

• What kind of equipment and supplies will the agency provide? Are there limitations to the number and types of infusion pumps and supplies available?

For example, if you require HPN every night, you may benefit from a back-up infusion pump in the event of pump malfunction in the middle of the night and your company cannot replace the pump in a timely manner.

• Is the agency experiencing any product shortages related to the therapies you require? If so, do they have a plan in place to manage these shortages? While product shortages are often unavoidable, there should be a reasonable alternative plan in place. If the answer is “I don’t know” or there is no alternative plan in place, this should raise a significant quality concern.

• Does the agency have experience managing other HPN consumers? How many people who are on the same therapy that you require do they currently service? You really don’t want to be the only one!

• How does the agency accommodate travel away from home, especially when the travel is for an extended period or out of state?

While it may not be realistic to find a perfect home infusion provider or DME company that checks all the boxes, you as a consumer must determine what criteria are most important to you. Focus on that as you tailor what questions to ask and as you consider your best option. Don’t be afraid to speak up and ask for what you need. You need to advocate for your right to receive the products and services you need to keep you alive and safe!

Nutrition Support Product Shortages: Why is it happening?

Product shortages related to PN therapy are not new, but the problem had historically been intermittent and short-lived. Almost every PN component has been in short supply at some point in time, but the frequency seems to have increased, and the problem has expanded to include shortages of products related to EN therapy as well. The impact of the COVID-19 pandemic on supply chain issues and workforce demand has certainly played a role in creating product shortages.

Spring 2023

Managing the IV Multivitamin Shortage The supply of IV multivitamins has experienced intermittent periods of shortage for the past several decades. We are now facing another period of product shortage. The manufacturer recently announced the unavailability of a component that is critically needed to supply the product, and the timeline to resolve the issue is uncertain. This will impact the availability of both adult and pediatric IV multivitamins for weeks to several months. There are no alternative IV multivitamins available in the U.S. market. This creates a challenging situation since multivitamins are a critical component of PN. Here is what you can do to advocate for yourself: •Discuss the issue with your HPN clinician and your home infusion pharmacist and ask if there is a plan in place to ensure you are getting what you need until the shortage is resolved.

•You may be asked to reduce the frequency of IV multivitamin to three days per week. If this is the case, you should also be supplementing with an oral multivitamin daily.

•Ask your home infusion pharmacy to provide an appropriate oral multivitamin supplement until the IV multivitamin shortage is resolved. If this is not possible, you will need to purchase a supply.

•Make sure you are taking an oral multivitamin that is complete with thirteen vitamins (see page 12).

Avoid the use of oral multivitamins in the gummy form. They lack many of the necessary B-vitamins.

•Notify your HPN clinician if you are unable to tolerate an oral multivitamin.

•The American Society for Parenteral and Enteral Nutrition (ASPEN) has developed recommendations to help clinicians manage patients receiving PN when an IV multivitamin shortage occurs. It is a great resource that you can share and discuss with the doctor that prescribes your HPN and with your home infusion provider. The document can be accessed at nutritioncare.org.

Volume 44, No. 1

List of Essential Vitamins •vitamin A •vitamin C (ascorbic acid) •vitamin D •vitamin E •vitamin K •thiamine (vitamin B1) •riboflavin (vitamin B2) •niacin •pyridoxine (vitamin B6) •folic acid •vitamin B12 (cyanocobalamin) •biotin •pantothenic acid

Several factors contribute to making PN ingredients particularly susceptible to shortages. The sterile injectable components of PN are produced by only a few manufacturers and the geographic diversity of manufacturing sites is limited. In addition, there are limited sources of the active ingredients and the raw materials needed to produce the active ingredients.

We have experienced closure of production sites due to natural disasters, such as with Hurricane Marie in 2017. Some manufacturers have had to temporarily halt production due to quality issues requiring corrective action, such as what occurred with infant formula manufactured by Abbott Nutrition. When one company is unable to manufacture a PN component or EN formula, it increases demand on another company, and it takes long lead times to meet this demand. In some cases, there is only a single manufacturer available, and no one is there to pick up the unmet need for supply.

What You Can Do to Manage Nutrition Product Shortages For consumers of HPN, it may be necessary to reduce the dose of a specific nutrient in your PN to conserve supply. It may also be necessary to remove the nutrient entirely if supply is unavailable. In addition, certain products used to administer your PN or EN may be in limited supply at times. For example, this may include supply of pumps, tubing sets, and flushes. You may be asked to switch to a different pump or supply item.

Here are things you can do to stay informed, educated,

(518) 262-5079 • LifelineLetter — 13

On Your Behalf

In January, the Oley Foundation, as well as two coalitions Oley is part of, the Digestive Disease National Coalition (DDNC) and Patients and Providers for Medical Nutrition Equity (PPMNE), submitted comments to the Centers for Medicare and Medicaid Services (CMS) asking that medically necessary foods—such as IV nutrition and tube feeding—be considered an Essential Health Benefit.

The request for information for CMS was in relation to insurance coverage. Importantly, this was also an opportunity to highlight that IV nutrition and tube feeding are life-sustaining and critical.

Yo u c a n r e a d m o r e a b o u t t h e C M S request for comments at federalregister.gov/ documents/2022/12/02/2022-26282/request-forinformation-essential-health-benefits and find links to the letters submitted by Oley, DDNC, and PPMNE at oley.org/Legislation.

and safe during periods of product shortages: •Ask your doctor or team that prescribes your home nutrition therapy and your home infusion provider to keep you updated of any product shortages affecting your therapy.

•If you are on PN, adhere to any oral supplement regimen you are asked to take when the dose of that nutrient that you would normally receive by IV is reduced or removed. ◊ Ask your infusion pharmacy to provide the necessary supplement to help ensure you are taking the proper dosage form and dose. ◊ If you are asked to purchase the over-the-counter supplement on your own, make sure it is the correct one. ◊ Notify your doctor or team that prescribes your PN if you do not tolerate the oral nutrient supplement.

•If you are on PN, review your label to look for changes or omission of a nutrient. ◊ Notify your doctor or team that prescribes your PN and your infusion pharmacy if you think something is missing.

•If you are on PN or EN, ask your infusion pharm-macy or DME company to keep you updated regarding return of supply. You should resume normal dosing as soon as product is available.

•If you are on PN or EN, ask your infusion pharmacy or DME company if you have any questions regarding a product change.

14 — LifelineLetter • (518) 262-5079

Note: Some parts of this article are focused on HPN and home infusion pharmacies because of the closures in 2022 and ongoing shortages of HPN components, but as this article was going to press, backorders of enteral formula were being reported. Many of the tips offered here apply to home tube feeding and DME or home care companies, as well as infusion pharmacies.

Invited Commentary

The ability of home nutrition support consumers to receive the care they need has been significantly impacted by both service closures and product shortages. The problems are likely not going away anytime soon. While news accounts of these events have tended to play up the victim side of the story, it is just as important to discuss constructive ways that we as an Oley community can best manage existing barriers and minimize risk of future harm.

While it is imperative that we as a country maintain an adequate number of home infusion pharmacies to meet the needs of all HPN consumers, it may not be a therapy that all infusion pharmacies should even attempt to provide. It is a specialized therapy that requires an advanced level of training and experience in order to maintain safe practice.

Instead of promoting the provision of HPN services within all home infusion pharmacies, it may in fact be better to focus the therapy with those infusion pharmacies equipped with a competent staff and necessary resources in place to manage HPN. As a consumer of HPN, you have a right to demand competence from all your providers and should feel empowered to seek it out and change providers whenever that care is thought to be inadequate.

—Vanessa, the author I agree with this, however with Coram and Optum decreasing their footprint, it unfortunately decreases the options of home infusion providers and if a patient is too picky, they may find themselves without an option. Also, changing providers frequently may be seen as a “red flag.” Patients should weigh all options and go with the provider who meets the most of their criteria; they may find their current provider is their best option. Unfortunately, switching providers often can’t help in situations where there are national shortages or problems at the manufacturer level.

—Andrea, a prior home infusion dietitian

Spring 2023

As a consumer I think the vitamin shortage was the first time I really acknowledged how serious these things are. I’m grateful I can take some things PO (by mouth) and I really started reevaluating my diet, trying to be really intentional and get the most out of what I eat, which I’ve almost never thought about. Ultimately I don’t know if that would make a difference, but it felt like something I could control. It’s scary.

—Maisy, a home parenteral (IV) nutrition consumer In November 2022, my DME provider informed me that my formulas, Jevity 1.0 and Ensure Plus, were out of stock and on backorder. I always try to build up a reserve supply, so I wasn’t too worried, but then it happened again, and again, and again, and it keeps happening, so now I have no confidence that my life-sustaining feeding supplies will be available when I need them. At first, I thought that this was my provider’s fault, so I started looking around for a new supplier but quickly realized that other providers were having similar issues.

It turns out that the problem is with Abbott Labs, the manufacturer of Jevity and Ensure—and baby formula. We all heard so much about the baby formula crisis, but not a word about this shortage in the press or on TV. As a temporary solution, my provider suggested that I switch to Nutren 1.0 with Fiber and Boost Plus, both Nestlé products, but guess what? Because of the huge demand for these substitutes, these formulas are also on backorder—the whole supply chain is clogged up. I had been asking, through Abbott’s customer service hotline, what was going on.

Finally, in late February, Abbott sent out a letter to the DME providers listing all of its products that are unavailable and listing ETAs, but in the case of Jevity 1.0, there still is no ETA. What is going on, and what can we do about it?

— Michael, a home enteral nutrition (tube feeding) consumer I contacted the Oley Foundation on February 22 about my concerns relating to the lack of availability of Jevity1.5 in my area. As I ventured out to find Jevity (for which I pay out of pocket), I was met with disappointment and confusion. My pharmacy reported that would be going the product in a week or two as the order was backordered. I have yet to

Volume 44, No. 1

receive any product and I didn’t contact Oley until three weeks had passed. I started contacting as many suppliers as I could about Jevity and the answer was the same—no product. I called Abbott laboratories and was assured that product would be available “soon.”

I spoke with a dietitian who had no idea what I could do as a substitute for the Jevity other than to try Boost. I explained I couldn’t handle Boost as it caused me severe diarrhea. I changed tactics and purchased “meal replacement” products and added the needed fiber and drank them slowly and as safely as I could. Not a wise decision, on my part, as I choked frequently and, further, caused myself some serious constipation.

Good friends found some Jevity and ordered it.

The prices varied from $48.00 to $65.00 per case, and shipping fees were all over the board. These orders came from Ebay as well as a few private sources.

Some of the Jevity I did receive was out of date.

One case arrived with an open container and the remainder of that case was coagulated. One case I received cost me $55.00 in shipping fees. I am still uncertain as to what the current situation is, but I have enough now to get through three more weeks IF I CUT MY CURRENT NEEDS IN HALF DAILY. There are positives about this situation for sure.

(518) 262-5079 • LifelineLetter — 15

I am totally responsible for my own welfare and I am certain that I will make a plan for backup supplies in the future.

One last note: I am not aware of the size of our numbers in the world, but surely we deserve a heads up about our needs and the availability of life-saving formulas.

—Roger, a home enteral nutrition (tube feeding) consumer▼

ACTION ITEM

Consumers: Tell us about your experiences with shortages and/or switching home infusion providers. We can only advocate for you when we know and understand your concerns.

Email us at oleyinformation@ gmail.com.

pioneering novel gi solutions with a one tract mind

www.9METERS.com

16 — LifelineLetter • (518) 262-5079

Spring 2023

Partnering with Patients: An Ace Up Your Sleeve The Oley Foundation is presenting a symposium at the ASPEN 2023 Nutrition Science & Practice Conference.

Join us for “Partnering with Patients: An Ace Up Your Sleeve,” Thursday, April 20, 2023, 11:00 a.m.–12:30 p.m. PST (in person or virtual).

Home nutrition support consumers and clinicians will discuss the complex decisions consumers face in the context of time on therapy, goals and quality of life, as well as how clinicians can best support their patients. The need for clinicians to partner with patients and participate in patient-led research initiatives will also be discussed.

Speakers will include Luccas Borges; Maisy Cyr, MSW; Beth Gore, PhD; Sivan Kinberg, MD; Emily Hoopes; ShayLee Hunter; David Mercer, MD; Kelly Tappenden, PhD, RD; and Paul Wischemeyer, MD. Visit oley.org/OLEY_ASPENSymposium for more information including the schedule, and to register to watch the symposium virtually.

APRIL 20-23, 2023

LAS VEGAS, NV and VIRTUAL SO MANY OPPORTUNITIES • Keep up with the latest research and evidence-based practices in nutrition support.

• Join live presentations, discussions, and chat rooms.

• Ask questions, connect with experts and peers.

• See product innovations.

SO IMPORTANT To you and others on home nutrition support therapy.

SPECIAL DISCOUNTS Available for consumers and caregivers.

Email aspen@nutritioncare.org to register at discounted rate.

nutritioncare.org/conference

ASPEN23_Oley_3.66x9.315.indd 1

11/21/22 8:29 AM

Volume 44, No. 1

40th Anniversary Celebration On February 2, 2023, the Oley Foundation celebrated its 40th anniversary with a special event at the Hilton Garden Inn at Albany Medical Center, Albany, New York, where the organization was founded by Dr. Lyn Howard and her patient Clarence “Oley” Oldenburg. Oley Foundation members from across the country spoke about how their lives changed when they met people like themselves who were living—and thriving—with their chronic illness. Participants noted how the foundation introduced them to new innovations like portable pumps and helped them navigate the complexities of living with home IV nutrition and tube feeding. “You can’t control intestinal failure,” said one member. “But you can control how to live.”

For a video of the event, as well as videos Oley members have submitted, visit oley.org/40th_Anniversary.

We will be celebrating all year long. Please help us salute the past 40 years by creating brief videos or preparing statements to showcase how Oley Foundation efforts have helped you and/or your loved one live a fuller life. Submit to oleyfoundation@gmail.com. We hope to see many of you at the conference, and the1980s themed reception on June 27!

In 1984 the Oley Foundation served approximately 200 members; today, it serves over 27,000.

Oley Foundation staff today, with Dr. Howard (L to R): Lisa Metzger; Maisy Cyr; Beth Gore; Dr. Howard; Joan Bishop; Andrea Taylor; Cathy Harrington; and Mary Wootten.

At the event, Teresa Clayton, Clarence and Kay Oldenburg’s daughter, shared memories of her parents and Oley gatherings. Here, Teresa is joined by Oley Trustee Steve Atkinson, Executive Director Emeritus Joan Bishop, and Executive Director Beth Gore.

(518) 262-5079 • LifelineLetter — 17

18 — LifelineLetter • (518) 262-5079

2023 Oley Calendar COVID-19 continues to have the potential to influence when and where gatherings occur. Please check oley.org or other appropriate websites for the most up-to-date information on the events listed below.

Ongoing: Applications being accepted for Oley Tim Weaver Camp Scholarship.

April 20: Oley Symposium, "Partnering with Patients: An Ace Up Your Sleeve," at ASPEN conference, Las Vegas, NV April 21–23: Oley exhibiting at American Society for Parenteral & Enteral Nutrition (ASPEN) conference, Las Vegas, NV April 27 (and then the fourth Thursday of every month): TPN Support Group for Consumers and Caregivers (virtual), hosted by Amber Gates* April 30 (and then the last Sunday of every month): Teens HPEN (ages 13–17) support group meeting (virtual), hosted by Kelly Baker* May 4 (and then the first Thursday of every month): Nutrition Group 4 All Feeding Tube/TPN Support Group (virtual), hosted by Oley Ambassador Crystal Killian* May 10 (and then second Wednesday of every month): Young adult (ages 18–35) support group (virtual), hosted

by Oley Ambassador Darla Burr* May 11 (and then the second Thursday of every month): Tube Feeding/TPN Support Group for Patients and Caregivers (virtual), hosted by Oley Ambassador Barbara Rudzin* June 27–30: Oley Annual Conference, "Gateway to the Future," St. Louis, MO, and virtual June 30-July 3: Oley presenting at Congress of the Intestinal Rehabilitation and Transplant Association (CIRTA), Chicago, IL *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.

Additional Meetings of Interest: June 28–July 1: Mitochondrial Medicine Symposium (UMDF), Charlotte, NC July 6–8: Color of Crohn’s and Chronic Illness (COCCI) conference, Atlanta, GA August 10–12: United Ostomy Associations of America (UOAA) conference, Houston, TX

Spring 2023

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.

Fresenius Kabi

Fresenius Kabi is a leading global healthcare company that focuses on pharmaceuticals and medical devices used to care for critically and chronically ill patients inside and outside the hospital. Fresenius Kabi products include intravenous specialty and generic medicines, transfusion technologies, infusion therapies, clinical nutrition, and related medical devices.

Nutrishare

Nutrishare has been serving patients for over thirty years as the only home infusion pharmacy specializing exclusively in home PN. Nutrishare provides one-on-one concierge service with a dedicated clinician, supports domestic and international travel, and empowers patients to choose the pump and supplies that are best for them. Learn more at Nutrishare.com.

Optum ® Infusion Pharmacy

Optum Infusion Pharmacy is the next-generation infusion pharmacy that works for you. Our collaborative team is made up of experts in nutrition, nursing and pharmacy. And our patient liaisons have personal experience living with parenteral nutrition. Grounded in clinical innovation, we provide consistent, convenient and compassionate care.

Volume 44, No. 1

(518) 262-5079 • LifelineLetter — 19

Notable Individual Gifts

Oley Corporate Partners

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 December 30, 2022, to March 2, 2023.

Memorials: In memory of Hadar Birger-Bray; Judge Joseph C. Bruno; Ann DeBarbieri; Lenny DiCarro; Alicia Hoelle; Shirley, Arnold and Fred Klein; Francis Murray; Robert Noble; Gary W. Rieck Tributes: In honor of Daniel and Rebecca Appel; Joan Bishop; Nancy Bitton; Bettemarie Bond and family; Todd Friedman and family; Manny Gore, “for inspiring me to smile and keep my sense of humor”; Dr. Lyn Howard; Dr. Darlene Kelly; Barbara Klingler, thirty years on HPN; Aidan Koncius; Alex Mackay; Jennifer Mason; Michael Medwar and family; Jeff Nemeth; Richard and Donna Noble “and their support of the Oley Foundation”; the Oley Foundation, “congratulations on forty years!”

Fundraisers: Donation from sales of Gastrostomy Tube: Fuel Me Up! children’s Matching Gifts: CBRE; Cisco; FM Global; Johnson & Johnson; Saratoga Water Services 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

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+) VectivBio Zealand Pharma BRONZE STAR PARTNERS ($20,000+) Abbott Baxter International Inc. Cardinal Health, Inc. Coram / CVS specialty infusionservices Fresenius Kabi USA Kate Farms Nutrishare Optum Infusion Pharmacy BENEFACTOR LEVEL PARTNERS ($10,000+) Avanos Nestlé Health Science PATRON LEVEL PARTNERS ($5,000+) Amerita, Inc. B. Braun Medical Inc. MOOG Medical Real Food Blends Soleo Health

LifelineLetter

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

Join us at Oley 2023, June 27-30 in St. Louis , MO Scan code to register!

A Look Back at Oley's History

Kay and Clarence “Oley” Oldenburg, Oley Foundation co-founder, at an Oley picnic—a precursor to the annual conference—in 1987, Saratoga Springs, New York.

Watch for more photos and stories throughout the year!

From the Oley Mailbox: In celebration of the Oley Foundation’s 40th anniversary and Joan Bishop’s upcoming retirement, I thought I would pass along a few memories from the early days.

My young family and I first became familiar with Oley shortly after its inception. Jim started on HPN in early 1975. In the 1980s all the conferences were held in Saratoga Springs, New York, not far from our home in Connecticut….It became a family adventure with a deeper meaning. Not to fail to mention the educational value, but that was only part of it. Knowing there were other people living and thriving on HPN. Our children met other HPN children and families like theirs. It became of great support to us.

Of course the fun: TPN bag relay races, the night fire alarm at the hotel and all the TPN poles on the lawn in the middle of the night. Yes, also the night runs to Ben and Jerry’s ice cream store! My children made it their mission to see how much “stuff” they could collect from the vendors! Thank you, Oley, and a big thank you Joan Bishop.

—Susan W.