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hi my name is elizabeth giuliati and i'm one of the donor coordinators at mass general today i'd like to discuss some information about kidney pair donation first what is kidney pair donation it's a general term for a method of matching donor and recipient pairs who are not directly compatible often referred to as a kidney exchange or swap as of the end of 2020 there were two widely available kpd programs one through unos the government agency that handles the deceased donor waitlist and one through the national kidney registry or nkr unless specified otherwise anytime we mention kpd we will be referring to options available through either program the parrot exchange swaps involve at least two donor recipient pairs but often more impaired donation the recipients would exchange donors so the donor would donate to a compatible recipient and their intended recipient would receive a living donor kidney from a donor that they are compatible with we'll go into more detail about how that process works throughout the rest of this presentation in order to participate in the paired kidney donation program both the donor and recipient must complete this education and sign an informed consent specific to the kpd program this slide shows the simplest form of kidney pair donation on the top row you see donor 1 and recipient 1 are not compatible and on the bottom row donor 2 and recipient 2 are not compatible however donor 1 is compatible with recipient 2 and donor 2 is compatible with recipient 1 so by exchanging donors both recipients receive a living donor transplant however most paired exchanges look more like this image matches are often started by a non-directive donor or ndd that ndd donates to recipient one whose incompatible donor donor one is paired with recipient 2 and so on and so forth there are a lot of terms associated with the parrot exchange since there are more donors and recipients involved than in a direct donation anytime you hear kpd donor or recipient intended donor or recipient or paired donor or recipient that is referring to the incompatible pair for instance donor two and recipient two in the blue box the matched donor would be the donor who has a compatible kidney for recipient 2 shown here in yellow who is almost always at another transplant center the matched recipient is the recipient with whom donor 2 is compatible shown here in red again almost always at another transplant center now that we have the definitions laid out let's get into the process of being entered into the kpb program starting with the donor first all donors need to be approved for donation at selection committee once approved the donor needs to complete this kpd education sign consent forms and sign release forms so that we can provide information to the kpb program and ultimately to the recipient transplant center where the donor's kidney will end up the entire donor chart ct scan images and tissue typing information is entered into the confidential ppd system also the donor will need to have blood drawn to be frozen at the kpd lab which saves the donor from needing to have blood drawn for cross-matching every time a potential swap comes up however there are still times when the donor may need to have additional blood drawn most often when donors are matched with recipients who have a lot of antibodies on the recipient side the first step is similar the recipient needs to complete all testing required to be considered ready for transplant the recipient then also completes this kpd education signs their consent form and signs release form so that we can provide information to the kpd program and ultimately to the donor transplant center where their kidney will be coming from the information shared about recipients is less than on the donor side just the demographic information including insurance blood type and tissue typing information it is very important that recipients in the parrot exchange stay up to date on returning tissue typing kit to the hla lab at mass general as antibody levels in the kpd system need to be updated on a regular basis to remain active in the system another point i'd like to emphasize is the need for both donors and recipients to tell their team as soon as possible if they will be unavailable for donation or transplant during a given time frame this could be due to travel work commitments family events any situation where they would not be able to come in for surgery if a match is offered and the donor or recipient tells us at that time that they won't be available it could affect the likelihood of that pair being placed in another match in the future the time between when we first find out that there could be a match and the actual surgery date is typically around three weeks so the pair would be inactivated in the program three weeks prior to the date that they're not available and would be reactivated once they're available again next i'm going to discuss how the matching process works once the pair has signed all consents their information is entered into the confidential database with other incompatible pairs waiting to be matched the paired donation program has a computerized program that generates the matches based on a number of factors so the pairs themselves cannot choose who they are matched with the donor team evaluates any potential donors for our recipients to make sure they meet the mass general donor criteria once a match is offered the recipient surgeon nephrologist and tissue typing lab director reviews the information on the match donor to make sure it would be appropriate for the recipient the kpd donor and or recipient may decline a match or withdraw from the kpb program at any time there are some risks specific to kidney paired donation it may take a while for the donor or recipient to find a match depending on their blood types tissue typing and other factors even once a match is offered the donor may need to wait beyond the typical three-week period if logistical issues arise such as their matched recipient getting sick or an or being unavailable on the scheduled date it's possible that the recipient may not receive a transplant if there is an unexpected issue with the matched donor's kidney found during or after surgery the donor's kidney might not be transplanted or the matched recipient might not be able to receive the transplant due to unexpected events finally it's possible that the donor's intended recipient and their matched recipient may not do equally well after the transplant there are a few additional risks to the kpb program almost all kidneys in the parrot exchange are shipped from the donor transplant center to the recipient transplant center and the donor kidney could be lost or damaged during this travel a gps tracking device is included in the box containing the kidney to track the location throughout the transportation process on the financial side the first point is really not applicable in most cases as the donated kidney is shipped to the recipient but we cover it just in case if the donor travels to their matched recipients transplant center for surgery the recipient's insurance may not cover the travel cost also because the donor surgery is covered by their matched recipients insurance it's possible that the donor's name may appear on the recipient's insurance estimation of benefits if you have any questions about this risk we can get you in touch with one of the financial coordinators now that we've gone through the risks of the kpb program we want to reassure everyone that every effort is made to remedy a failed swap as soon as possible this often involves receiving top priority for another compatible match in the kpb program however since they are separate systems no additional deceased donor waitlist priority can can be provided to a recipient in the case of a failed kpd exchange we also want to remind everyone that all information is kept confidential and all health care information is protected throughout the kpb process once a match is offered the donor's medical record is reviewed by the recipient transplant center which is why the release form must be signed by all kpd participants however the donor and recipient themselves are not given any identifying information about their matched recipient or donor we're now going to provide information about various types of donors available through the kpd program we'll start with the definitions of these donor types and then go into more detail in the next few slides first the traditional kpb donor is one who donates within one day of the recipient surgery almost always on the same day this type of kpd is the most common a bridge donor is a donor who agrees to donate their kidney after their intended recipient has received the transplant a non-directed donor or mdd is someone who decides to donate their kidney but doesn't have a specific recipient in mind advanced donation allows the donor to donate prior to their intended recipients transplant remote donation allows the donor recipient pairs to be evaluated and undergo surgery at separate transplant centers while still being linked to each other remote donors can either donate directly to their intended recipient or can be entered into the paired exchange we'll now go into more detail starting with the traditional kpd donor recipient scenario in these cases the donor and recipient surgeries occur within one day of each other but almost always on the same day the donor kidney is either driven or flown from the donor center to the recipient center where the transplant will take place the donation and transplant may not occur at the same time due to the distance the kidney needs to travel time zone variations or logistic issues we find that most often the donor surgery starts first thing in the morning while the recipient's surgery is often in the afternoon next we'll discuss bridge donors again in this scenario the donor is donating after their intended recipient has received their transplant the need for bridge donation is determined by the kpd program when just when logistics do not allow for same-day surgeries the bridge donor would serve as a bridge to the next cluster of transplants bridge donation can allow for the donor to be with their intended recipient during surgery and recovery but since mass general has no control over whether a donor is bridged or not bridged donation should not be used as a plan for donors to be the main support person for their recipient right after transplant some additional considerations include the potential need for additional evaluation testing or blood draws for cross matching due to the timing of surgery most bridge donors wait 1-14 days after their intended recipients transplant but could wait up to three months also depending on the reason for the bridge the donation date might be changed more than once for example the donor might be asked to bridge if their matched recipient gets ill and if the recipient needs longer than expected to recover the kpd program might ask the donor to push the donation back another week or two however the bridge donor has the option to revise or limit the estimated amount of time they are willing to be a bridge donor based on the current estimated bridge time in the previous example if a donor is bridged because their matched recipient is ill they can specify they will wait four weeks but not any longer and the kpd program will do their best to accommodate those wishes this image gives a visual representation of bridge donation mr a donates to mr b mr c donates to ms d but there's no immediate match for mr e mr e becomes a bridge donor and ends up donating to mr x several months later in this scenario next we'll discuss non-directed donors or mbds these donors are often referred to as altruistic donors or good samaritan donors ndds have multiple options for how they can decide to allocate their kidney they can donate to someone on the deceased donor list they can participate in the kpd program or they can participate in any other option in the transplant hospitals donation service area we encourage our mdds to donate through the kpb program as it facilitates more transplants than either of the other options available when an ndd begins a chain in the kpd program a recipient on the deceased donor waitlist also receives a living donor transplant either at the end of that chain or in a future match these images show how many transplants can be affected by one non-directed donor starting a chain the next two options are available specifically through the national kidney registries parrot exchange program first up is advanced donation where the donor surgery takes place before the intended recipients transplant there is additional education required and an additional consent form for both donor and recipient to complete with advanced donation the donor and recipient are activated and mkr separately there is additional risk as the donor would donate before being guaranteed that the recipient can be matched and transplanted there are two types of advanced donors short-term or voucher in the short-term scenario the recipient is at a point where they need a transplant but may not have a compatible donor available in nkr or their paired donor may have time constraints on when they can donate short-term advance donation can also allow the surgeries to be staggered so the recipient is available to care for the donor after surgery and the donor to care for the recipient advanced donation can also be used to save a swap if nkr deems it necessary the donor would donate and the rest of the chain would continue as planned but at a later date the voucher program is available when the recipient is not currently at the point where they need a transplant imminently for example the recipient's gfr might be high enough that they can wait for a transplant or they might be too sick or need treatment before they would qualify for transplant the voucher program can also be used if the donor's intended recipient receives a transplant from another living donor or a deceased donor the donor would donate their kidney and the voucher allows the recipient to receive a living donor kidney when they need a transplant again in the future a newer aspect of advanced donation involves the family voucher program donors who do not currently have a recipient can name family members and or friends as potential recipients even if they do not have kidney disease or need a transplant at the present time if one of the main potential recipients requires a transplant in the future they can receive a living donor transplant through nkr while a donor can name multiple potential recipients the voucher would only allow one of those people to receive a transplant the list of potential recipients must be finalized before the donation date the final option we'll be discussing is remote donation also offered through nkr remote donation allows donors who live far away from the recipient center to be worked up and donate their kidney at a local transplant center that participates in nkr the kidney can then be shipped directly to their intended recipient if they're compatible or the donor can be entered into the parrot exchange on behalf of their intended recipient this option can allow donors to save on travel expensive and stay close to home during their evaluation and recovery the map seen here shows the nkr centers that participate in remote donation as of the end of 2020. now i'd like to discuss communication between matched donors and recipients in the kpd program to participate in nkr's paired exchange program there are two main options for information sharing you can be willing to remove anonymity meaning that you might be willing to meet the match donor or recipient if asked and or you can be willing to allow the match donor to know how their kidney is doing so whether the kidney is still functioning and what the latest creatinine is also the nkr donor or recipient may contact their transplant center to facilitate a letter being exchanged in this case the two transplant centers would be the intermediaries so the outside center would send the letter to mass general who would then pass the letter on to the donor or recipient this helps to maintain some anonymity in the initial stages of communication if you are interested in any of these options please let us know if you are not interested in these options please let us know and we will document that in nkr keep in mind that you can change your mind at any point in the future and we will change your preferences in the system the donor team will support whatever decision you determine is best for you if the donor and recipient of a matched pair request meet after the transplant the transplant team would facilitate this meeting we often want the pair to be fully recovered recovered from surgery before setting up the initial introduction any initial communication with the match donor or recipient is best done through the mass general living donor team please keep in mind that the match donor or recipient may wish to remain anonymous after donation and transplant and that decision should be respected finally we wanted to discuss one additional perk donation through the national kidney registry nkr now offers their donor shield program to all donors who participate in a paired exchange donor shield includes lost wage reimbursement and travel reimbursement which we will discuss in the next slide life insurance and disability insurance for donation related issues legal representation for situations situations such as wrongful termination or loss of life or health insurance after donation and prioritization for a living donor kidney transplant through nkr if the donor experiences kidney failure in the future junos provides previous living donors with prioritization on the don't wait list you can find additional information on donor shield at the link listed here travel and lost wage reimbursement can be incredibly helpful for donors all donors who participate in an nkr paired exchange are eligible for up to two thousand dollars reimbursed for travel this amount is the total allowed for the donor and or any support people in order to receive reimbursement you must provide receipt and driving expenses are reimbursed at irs rates donor shield also offers two to four weeks of lost wage reimbursement up to fifteen hundred dollars a week and also requires documentation before being reimbursed please contact the donor team prior to donation for more information on getting these reimbursement processes started finally we'd like to provide a brief overview of the next steps once you've completed this education please contact us if you have any questions or concerns and then sign and return your kpb consents for recipients make sure to return your tissue typing blood kit as the hla lab needs to have a sample drawn within 30 days to activate you in the system for donors you will need to have blood drawn for cryo storage this blood draw can be completed at your home by a phlebotomist sent by mkr but it may take up to a couple weeks to schedule this appointment you also have the option to come to mass general for this blood draw that is convenient for you once both the donor and recipient are activated in nkr we wait until nkr offers a match it may take months to find a match or it could happen within a few hours of the pair being activated again it is very important that both donor and recipient tell us right away if they will be unavailable for surgery at any point when a match is offered the donor team evaluates the outside donor to make sure that it looks like a good match for the mass general recipient once the offer is accepted by all the transplant centers in the match the coordinators will contact the donor and recipient to review the proposed date of surgery we will also work on scheduling the dates and times for pre-operative testing at mass general but keep in mind that these dates need to be coordinated with the other transplant centers in the match we will do our best to make sure that the timing of these appointments is convenient for both donor and recipients be aware that all proposed dates are subjects to change especially early in the process before finishing this presentation we wanted to show a real-life example of an mkr paired exchange involving a mass general donor and recipient pair that was featured in the new york times in 2012. we still find it so inspiring to see how many people can be helped even just through one chain if you have any questions or concerns we've provided the contact information for the mass general living donor program the national kidney registry and donor shield thank you for your time