Todd Pesavento, MD Regional Councillor Region 10 Meeting Todd Pesavento, MD Regional Councillor Welcome to the spring Region 10 meeting. We know you took time out of your schedule to be here and your attendance is appreciated. I would also like to thank Sanofi Genzyme, Essential, and CareDx for exhibiting at our meeting today. Please take a minute to say hello.

Meeting Agenda Update from OPTN/UNOS leadership Regional Discussion Session Review and discuss 6 public comment proposals, 2 concept papers Your feedback will be shared with the DTAC, Executive, MPSC, Operations and Safety, OPO, Pancreas, Thoracic Committees Updates on committee activities: DTAC, Kidney, Liver, Membership and Professional Standards, and Thoracic Committees Today’s meeting includes An update from OPTN/UNOS leadership – Sue Dunn, UNOS Vice President A regional discussion session –this is an opportunity to have a region-wide discussion about a regional or national issue. Today’s topic(s) is: Discuss and comment on proposed policies – your feedback will be shared with the sponsoring committees You will also hear updates from the Ad Hoc Disease Transmission Advisory, Kidney, Liver, and Membership and Professional Standards Committees.

Fall 2018 Regional Meeting Date Fall public comment: August 3 - October 3, 2018 proposals will go to the Board for review in December Mark your calendar! Fall region 10 meeting: Friday, September 28 The regional meeting cycle runs concurrent with the public comment cycle. The fall 2018 public comment cycle will begin on August 3 and end October 3. The public comment proposals we discuss at the fall regional meeting will be reviewed by the Board in December. The fall regional meeting will be held on Friday, September 28.

Region 10 Meeting Attendance This slide shows our region’s meeting attendance over the last 3 meeting cycles compared to the nation. Region 10 data is in red (% of OPOs and transplant centers that attend the meeting) and national data is in blue. Our goal is to have at least one representative from each OPO, transplant center and histocompatibility lab. As you can see, we have better representation at the fall meetings. If you have suggestions to help engage more members in the meetings, please let me or Ross Walton know.

Regional Business As councillor, my role is to: Oversee regional operations Serve as the region’s representative to the OPTN/UNOS Board of Directors Share the region’s comments on public comment proposals To best represent the region, I need to hear from you Welcome members of the Board of Directors Warm welcome to new attendees at this meeting! As the regional councillor, I chair the regional meetings and oversee regional operations. Most importantly, I serve as the region’s representative to the Board of Directors. I am the voice of the region at the board meetings, and present the region’s comments on public comment proposals and other OPTN/UNOS matters. In order to do this, I need to hear from you. To that end, speak up today, and feel free to email or call me with any issues or concerns. I would like to welcome the Board members in attendance. If you would, please stand and state your position on the Board. Board members who might attend (all are registered): Gordon Bowen, Danyel Gooch, Ken Washburn I would also like to welcome the people who are attending our regional meeting for the first time. I know you will find value in today’s meeting and we are glad you are here.

OPTN/UNOS Volunteer Opportunities Ongoing: submit interest in committee and Board positions throughout the year Interested individuals must submit a bio form online OPTN website Members tab Get Involved Bio form includes a section to indicate specific committee and Board interest, including the position(s) you are interested in You can indicate your interest in serving on a committee or the Board by visiting the OPTN website and completing a biography form. Information is also available on the tent card at your table. Interested individuals must submit a bio form online to be considered for a committee vacancy. The bio form is located on the OPTN website under the members tab. The bio form includes a section for individuals to indicate their committee and Board interests. You can also select whether you want to serve as a regional representative and an at-large member. You can select both positions if you are interested.

OPTN/UNOS Committee Vacancies (terms beginning July 2018) Regional nominating committee selected primary and secondary representatives for the Ethics Committee vacancy Committee leadership is reviewing committee rosters, and finalizing for OPTN President-Elect review Purpose: ensure staffing needs of the committees are met, and expertise needed for project work is represented President-Elect reviews the membership of all committees Purpose: goal is for the committee system to represent the community we serve - balance of professions, opinions, race, gender New committee members will receive notice by early March Thank you to everyone who submitted a nomination to serve as the region 10 representative on the Ethics committee. I met with our region’s nominating committee, and we selected a primary and secondary candidate for the position based on: -professional experience -committee’s needs for subject-specific expertise -diversity in profession and demographics -past regional engagement -candidate’s ability to represent both regional and national perspectives -geographic balance in the region The committee chairs are reviewing the rosters now to make sure each committee has the members it needs to do the work of the committee over the next year. OPTN President-Elect, Sue Dunn, will review the committee rosters to make sure the committee system represents the community we serve and includes a balance of specialties, opinions, race and gender. Members appointed as regional representatives will receive notice by early March. Committee terms for new regional representatives will begin July 1, 2018.

What is new today? We want to get even more feedback from you! All attendees will have an opportunity to submit responses to questions we ask during the meeting Using an online tool – Poll Everywhere Your job: text to join our polling session instructions at the tables to help you (yellow paper) Today, we want to hear feedback from as many of you as possible. We are trying something new and using an online tool called Poll Everywhere to get feedback from you. We will ask a few questions throughout the day and ask you to respond to them. We would like all attendees to participate. To participate, you need to text to join our polling. I will walk you through the steps on the next slide, and instructions are also at your table on yellow paper for you to reference.

New! Electronic Feedback unos1 22333 D 22333 Step 1: Step 2: In an effort to collect more feedback from attendees, we are using Poll Everywhere to ask questions throughout the meeting. Participating is easy! First, take out your cell phones and text “unos1” to the number 22333. I’m going to pause here a moment to allow you to get out your phones. As we go through the meeting, we will ask for your feedback on specific questions related to your experience at the regional meeting. Later in the day, we are also going to use this software to get your thoughts on the MPSC during their presentation. As each question comes up, you will just need to text your response to the same number – 22333. Let’s get started with a test question so we can try it out.

A: True: Yay, that’s awesome! Test polling question In 2017, organs were recovered from over 10,000 donors (3.1% increase over 2016) and a total of 34,768 organ transplants (3.4% increase over 2016) were performed. A: True: Yay, that’s awesome! B: True: Yep, great work! Remember to text your response (A or B) to 22333.

Polling question: How engaged do you feel with UNOS Polling question: How engaged do you feel with UNOS? A) Not engaged B) Limited engagement C) Engaged D) Highly engaged Text your response (A,B,C,D) to 22333

How did you prepare today to discuss the topics on the agenda? A) Listened to a webinar or read public comment proposal(s) online B) Waited to hear the presentations today

What are we here to do today? Primary purpose: gather feedback from everyone, which requires your participation! We want you to… Ask questions Share your comments Vote (regional voting members) Network with colleagues and catch up Share information and learn from one another We want to remind you why we are here today. The primary reason is to get feedback from everyone here. Which means we want you to actively participate today. We want you to ask questions and share your comments. Regional voting members will vote so that we know the sentiment of the region. We are also hear to network with colleagues, share information and learn from each other.

Feedback Opportunities Your feedback is crucial to the policy development process, and we are going to ask for even more We want to have a thorough discussion on all proposals How will we accomplish this? Answer specific questions the committee wants us to consider Talk about merits of the proposals Suggest improvements Your feedback is key to develop policies and bylaws that are comprehensive and able to be operationalized by the transplantation and donation community. The goal today is have a thorough discussion on each proposal. We want to know why you support a proposal and if you oppose a proposal tell us why. It is more important to know why a region votes one way or another versus the actual vote tally. The committee can’t make changes unless feedback is provided by the community. Today, we will ask you specific questions about each proposal. We will also want to talk about the merits of each proposals and suggest ways to make them better. And, tell us what you don’t think is good about a proposal and why.

Regional Sentiment Voting is another form of expressing your viewpoint about a proposal, it helps us quantify the feedback We don’t follow a specific order for voting Vote on the proposal as is; Vote on the proposal as is and suggest changes; Identify changes and then vote Important that you understand how to express your opinion and what we are voting on vs. following a specific order Comments and votes are our best effort to communicate regional sentiment We do want to know the region’s sentiment about proposals; whether the voting members support or oppose a proposal because it helps us quantify the feedback. We don’t follow a specific order for voting, so we don’t follow Robert’s Rules. We can vote on a proposal as written, vote on a proposal as is and suggest changes, sometimes in the form of an amendment, or we can identify changes and then vote. The amendment process is one way committees have found helpful to learn what revisions to the proposal would achieve broader consensus. It is more important that you know what we are voting on versus following a specific order for voting. The feedback we get today along with the vote tally is our best effort to collect regional sentiment on public comment proposals.

Voting members: new form to complete Pilot to increase public comment participation and gain more insight into the substance of public comments 4 proposals: OPTN Strategic Plan, Improving the OPTN/UNOS Committee Structure, Appendix L Revisions, Expedited Organ Placement Concept Paper Responses will be analyzed by the committees and shared with the Board Your name will not be shared and comments will not be posted on the OPTN website Your comments will not be added to the region’s comments posted online Return to the registration desk by the end of the day UNOS is piloting a new way of collecting public feedback on policy proposals with the goal of increasing public comment participation and gaining more insight into the substance of public comments. Your responses to the questions below will be shared with the Committees so they can analyze public comment feedback in depth, and assist the Board in making fully informed decisions. Your name will not be provided to the Committees or Board, and your comments on this form will not be posted on the OPTN website. Please answer all questions on the form (front and back) and return it to the registration desk when completed.

What do we do with your feedback? The feedback we collect today is communicated to the committees and Board influences changes to proposals before they are sent to the Board provides me information to better represent you at the Board meeting Board looks at all feedback and determines what is best for the OPTN as a whole – considering all viewpoints The feedback we collect today is communicated to the committees and Board. Your feedback influences changes to proposals before they are sent to the Board and it provides me with information to better represent your viewpoints during the Board meeting. The Board looks at feedback from all regions, individuals, and other groups and determines what is best for the OPTN as a whole.

Public Comment Opportunities Contact Regional Representatives List is located in the meeting booklet and on Transplant Pro: select the community tab, and then “regions” Submit public comment online OPTN website: http://optn.transplant.hrsa.gov/governance/public-comment/ Public comment closes March 23 If you have feedback on any of the public comment proposals, you have a few ways to provide it. You can contact our region’s representative to the sponsoring committee. A list of our region’s representatives is located in the booklet at your seat and also on the Transplant Pro website. You can also submit an individual public comment online through the OPTN website.

Regional Meeting Agenda: Non-Discussion Includes proposals anticipated to be: less controversial, minimal impact on the transplant community, and/or represent a clerical change to clarify policy or remain current with clinical practice Region was offered an opportunity to request that a proposal(s) be placed on the discussion agenda Proposals will be voted on today, but not presented or discussed Proposals presented and discussed during national webinars The proposals on the non-discussion (ND) agenda are anticipated to be less controversial, have minimal impact on the donation and transplantation community, and/or represent a clerical change to clarify the intent of policy or to remain current with clinical practice. The ND agenda is developed to give the regions more time to thoroughly discuss proposals that are controversial and have a larger impact on the community as a whole. You were provided an opportunity to request that a proposal on the non-discussion agenda be moved to the discussion agenda. We didn’t receive any requests to remove the proposals from the non-discussion agenda. We will vote on the non-discussion proposals today, but they will not be presented or discussed.

Non-Discussion Proposals: Vote You have the option to abstain from voting if you haven’t reviewed the proposals Manipulation of Waitlist Priority in the Organ Allocation System through the Escalation of Medical Therapies (Ethics Committee) Guidance for ABO Subtyping Organ Donors for Blood Groups A and AB (Operations and Safety Committee) Guidance on Requested Deceased Donor Information (OPO Committee) Review Board Guidance for Hypertrophic and Restrictive Cardiomyopathy Exception Requests (Thoracic Committee) This slide and the next one includes a list of the proposals on the non-discussion agenda that we will vote on today. **Read the title of each proposal** Note to Councillor: Next slide includes additional proposals, please read those as well.

Non-Discussion Proposals: Vote You have the option to abstain from voting if you haven’t reviewed the proposals Modification of the Lung Transplant Follow-Up Form (TRF) to Better Characterize Longitudinal Change in Lung Function following Transplantation (Thoracic Committee) Align VCA Transplant Program Membership Requirements with Requirements of Other Solid Organ Transplant Programs (VCA Committee) Guidance on Optimizing VCA Recovery from Deceased Donors (VCA Committee) The plan is to take one vote on the 7 items unless anyone is opposed to a specific proposal. If you will vote to oppose a proposal, please raise your hand and we will vote on each proposal separately, or vote on the proposal you don’t support separately. Note to councillors: **Please remind the group that they have the option to abstain if they didn’t attend one of the national webinars to hear the proposal presented or haven’t read the proposal online. If no hands are raised, take one vote on the 7 items: approve, oppose, abstentions If hands are raised: vote on each proposal separately – approve, oppose, abstentions

Regional Meeting Materials – online! Today’s presentations are posted on Transplant Pro Make sure to review the non-discussion proposals and committee updates not presented today Histo, OPO, Pediatric, Transplant Administrators, Transplant Coordinators, VCA Regional meeting materials are also posted on Transplant Pro All of the committee presentations and meeting materials are on the Transplant Pro website. A few committees did not present updates at today’s meeting. Please take time to review these presentations posted on the website. Meeting materials for today’s meeting are also posted on Transplant Pro.

Regional and National Data

Deceased Donation 2016-2017 U.S. Donors Recovered Organs Recovered   Donors Recovered Organs Recovered Organs Transplanted OTPD 2016 9,971 35,361 30,497 3.059 2017 10,284 36,413 31,614 3.074 % Change 3.1% 3.0% 3.7% 0.5%

Deceased Donation 2016-2017 Region 10 Donors Recovered   Donors Recovered Organs Recovered Organs Transplanted OTPD 2016 827 3,007 2,618 3.166 2017 897 3,188 2,778 3.097 % Change 8.5% 6.0% 6.1% -2.2%

Deceased Donors by Type and Region 2017 Still a relatively small percentage of donors recovered in Region 3 are from DCD, while at least 20% of donors in Regions 1, 6, 7, 8, 9, and 10 are DCD donors.

Deceased Donors by Type 2008-2017 Region 10

Deceased Donor Transplants 2014-2017 U.S.

Deceased Donor Transplants 2014-2017 Region 10

Framing the Day We want feedback from as many attendees as possible To manage the discussion on each proposal, please limit your comments to new comments, points that haven’t been raised To be sure your comments and questions are heard, please use microphones

Questions? Thank you for your attention and I am happy to answer questions.

Does coming to a regional meeting increase your interest in becoming involved or staying involved in UNOS? A)Yes B) Somewhat C) Neutral D) No

What was your favorite thing about the meeting today? A) Networking with colleagues B) Discussion C) Learning about proposals and OPTN activities D) Other

If you haven’t already, do you plan to submit a public comment on the OPTN website? A) Yes B) No