Public comment archives

“This proposal is particularly important in current times when more and more labs have access to higher resolution HLA typing to assess matching between donors and recipients. With the advent of new technologies that provide a much deeper understanding of the HLA genes and proteins, it is very important that the histocompatibility community has an efficient and quick way to include this new information to be considered by the programs when assessing matching and compatibility. I think this is long due and feel glad and thankful for this initiative.”

Valia Bravo-Egana, M.D., Director, Histocompatibility Immunology Laboratory at the Medical College of Georgia

OPTN Public comment

“ANNA supports this proposal.”

American Nephrology Nurses Association

OPTN Public comment

“These are welcome changes to listing patient and donor typings in UNOS, I support them.”

Geoffrey Land, M.D., Director, Vitalant

OPTN Public comment

“A transplant candidate’s income is a very sensitive topic, and patients may have concern that the information is being used to determine candidacy. There is great focus on paying for medications after transplant, so one would naturally assume that their income would be considered by the center when determining candidacy, even if adequate health insurance is in place. For this reason, I don’t know that patients would be honest about it. I do agree that this should be studied, but having it as required information from patients into a governmental system is not the best way to study it. Several good points also listed about understanding expenses and what part of the country in which one lives.”

Anonymous

OPTN public comment

“It is well known that patients from lower socioeconomic populations don’t do as well post-transplant. Placing an additional burden on transplant centers to add even two more fields of data that are not going to give new information is unreasonable. The fact that the income data is not going to be geographically cost adjusted makes it essentially useless. Based upon what patients tell us in other areas, I believe that the accuracy of the data will be questionable at best. Lastly, the accuracy of the data of number of people in a household will also be questionable at best, particularly if patients think that data could be shared with government agencies that could change or withdraw their financial aid.”

Nancy Long, Chief Quality Officer, Guidry & East

OPTN public comment

“While I do see some benefit in obtaining this information from a research standpoint, I would have some concern about the ethical stance on obtaining this information. Will this information have any bearing on a patient’s opportunity or access to transplant? What other ways might this information be used in the assessment of the potential recipient? Can this lead to a bias towards those of lower socioeconomic status?”

Wanda Gbemudu, Transplant Coordinator, Hospital of the University of Pennsylvania

OPTN public comment

“While i can appreciate the motivation behind the collection of this data, I do not know how it would improve access to transplant. There is already documentation and data available on SES and access to transplant. I find it more valuable to consider household income vs expenses as a more valuable tool. This, of course, would be time burdensome.”  

Dori Muench,Transplant Social Worker, Wake Forest Baptist Health

OPTN public comment 

“Assuming that the data collection is for research purposes that will hopefully assist with forming future policies that will ensure equity in transplants, this policy can be beneficial if handled correctly. Rather than requiring transplant hospital staff to collect this information, perhaps a better approach would be to have it be part of an optional survey that candidates have the choice to complete after their transplant evaluation. There should be a clear explanation that neither participation in the survey nor their answers will affect their ability to receive a transplant and that the sole purpose of the survey is to ensure fair access to transplants for all candidates. Information about their annual household income and household size could be sensitive information, so it should be treated in a sensitive manner and in a way to prevent any misunderstandings or mistrust.”

Anonymous

OPTN public comment

“I support this proposal with some significant hesitation. I believe this data should be collected and that UNOS should be looking at it to determine if there is a bias in who is being listed and transplanted. I agree 100% that families need to be able to afford transplant medications and need to be able to get to their transplant center, etc., however, there are too many patients being turned down for transplant because of their social/economic class. Patients with more money have greater access to transplant than those with less. That should not be. The problem is how is that fixed? How do we support patients who have difficulty with transportation, medications, hotels and meals during travel. Few state Medicaid programs support these additional expenses. I don’t see that changing any time soon. I share the concern of other comments written here, that if this information is disclosed to the transplant center, it could be a reason that the transplant center declines a patient for listing, thus making the bias even worse. I am not sure how to overcome that. Also, there are many patients that never make it to listing. Many of them are for financial reasons. This system proposed down not capture these patients. So I am not sure how accurate the data would actually be in the end.”

Dawn Freiberger, Transplant Coordinator, Boston Children’s Hospital

OPTN public comment

“I am concerned about the ethical issues related to use of this added data set. If the data show that there is a relationship between SES and transplant equity/outcomes will this lead to “quotas” being developed that could disadvantage overall organ transplant in certain populations. The proposal is not clear on how SES will be stratified. All income levels are not equal across the nation and no adjustment has been spelled out. While I believe that household income and number of people may be valid parameters for identifying SES, I think the disparities in actual utilization of this data set has strong potential to put this on a slippery slope.”

Darnell Waun, Patient Educator, University Hospital, UT Health Science Center

OPTN public comment

“I suspect the number of patients who are both good candidates for renal transplantation and on the verge of losing their very last dialysis access opportunity is very small. Often the loss of venous access that typifies a patient in this group also disqualifies them from receiving a renal transplant, for anatomic reasons. In other cases, medical reasons for the continued loss of dialysis accesses may also contraindicate a renal transplant. That having been said, for the narrow margin of patients who are both good candidates for renal transplantation and are on the verge of losing their last available dialysis access, I believe that they should be placed at the very top of the recipient list, with a national scope, rather than within the regional allocation circle. Clearly there are other groups that need our highest consideration and protection – children, previous living donors, and high PRA. However, people in the group in question are rapidly approaching death unless renal function is restored, and are such a small group that I do not believe that kidneys taken by them will be noticeable in terms of donor volume available to other groups.”

Jason Rolls, MD, Surgeon, Harper University Hospital

OPTN public comment

“The waiting time for a renal transplant can exceed 10 years at our hospital. We currently have 10 kidney transplant programs in the DSA. A policy for medically urgent needs has allowed some complex patients to have the opportunity to have a lifesaving transplant. I support the proposed policy and would suggest that two independent vascular surgeons review the dialysis options and write a supporting letter. There may be exceptions to this rule if it would be an undue burden to the patient. I also support exceptions to the 250 nm rule if this would prevent access to transplantation within a reasonable time for a particular patient.”

Hans Albin Gritsch, M.D., Surgical Director, Kidney Transplant Program, UCLA Health

OPTN public comment

“Medical urgency for kidney candidates is virtually never an emergency. Hence granting medical urgency status should be done prospectively, after the transplant center provides appropriate documentation, not retrospectively as proposed. Similarly, allowing centers 7 days to provide documentation is inappropriate for an issue that has typically been progressing over a prolonged period of tiem. In our DSA with 5 center performing pediatric kidney transplants, we have never had an instance of inability to receive dialysis documented over the past 15 years. We have provided medical urgency for only a single instance, a heart-kidney recipient who could not receive the allocated kidney when a small tumor was identified pre-kidney and post-heart transplant. I strongly feel that retrospective review allows the potential for misuse of the status while providing now gain, given the rarity of true medical urgency for kidney transplantation.”

Michael Moritz, M.D., Vice Chair, Department of Surgery, Lehigh Valley Health Network

OPTN public comment

“For many years now, the majority of patients awaiting a deceased donor kidney transplant will not get transplant and are more likely to be delisted for loss of transplant candidacy or die. This speaks to the severe shortage of kidneys. This proposal allows a subset of candidates to jump the line. This must be carefully monitored and I would favor this not being offered except for the very young (the pediatric patients and the EPTS>20 group) which already have carve outs in the current system.”

Adam Frank

OPTN public comment

“I agree that there needs to be some medical urgency policy, but I am concerned with this as written. The phrase: candidate must also either have exhausted dialysis, be currently dialyzed, or have a contraindication to dialysis via one of the following methods is very unclear and difficult to interpret and to enforce. Candidates classified as medically urgent may be retrospectively reviewed by the Kidney Transplantation Committee. I would change ‘may’ to ‘will be’ retrospectively reviewed. Every candidate listed for medical urgency and receives a transplant should be mandatorily reviewed I would NOT give medically urgent prioritizing for KDPI <= 35 donor organs unless the candidate is pediatric or has an EPTS <20. You could simply give each ‘medically urgent’ candidate 20 or 50 points to get them to the top of their standard categories for allocation. I would also agree to some sort of outside review of the true difficulty of access.”

Kenneth Andreoni, M.D., Associate Professor of Surgery, University of Florida

OPTN public comment

“As a family member of a liver transplant recipient who received MELD exception points for the presence of hepatocellular carcinoma, I believe that enhancements to the National Liver Review Board will help to ensure that the MELD score reflects the candidate’s condition and need for transplant and that this is done in a fair and consistent manner.”

Anonymous

OPTN public comment

“I believe strongly that the liver transplants should remain within the 250 mile radius (as long as it is in USA). The central US has the most percentage of organ donation notations on drivers licenses and should be awarded for that service to their fellow men/women that they intend to assist.”

Anonymous

OPTN public comment

“I agree with the authors comments. Unfortunately because the majority of members that review the status exception requests are adult cardiologist, I worry that they typically grant exception out of compassion for children. In doing so, there are probably too many exceptions being granted which bypasses the current intent of the exceptions. I think pediatric transplant cardiologist are better positioned to review these exceptions.”

Anonymous

OPTN public comment

“…On behalf of Children’s Hospital Los Angeles, I would like to voice our approval and enthusiasm for the concept of this proposal. Pediatric heart status exceptions are relatively common, and the most recent changes to the status definitions have led to nonuniform attitudes and applications about exceptions, particularly for 1A exceptions. Adult regional review boards often have limited pediatric expertise and investment, which can lead to either misunderstanding or at least non uniformity in the criteria used to evaluate exception requests. A national pediatric review board will, in its ideal form, help provide some uniformity to decision making and help disseminate prevailing attitudes regarding the acceptable criteria for urgent status exceptions. Our center has identified the following concerns and questions regarding the policy as it is currently written…”

Children’s Hospital Los Angeles

OPTN public comment

“I think the establishment of a National Board to evaluate exception requests is a good initiative. However, in my opinion too many exceptions can still overwhelm, and perhaps are overwhelming, the system – if exceptions become the rule, they will defeat the very purpose of allowing exceptions in the first place. To that end, I would suggest that in addition to having a National Board with appropriate program representatives evaluate exceptions, OPTN should also consider working on defining more stringent criteria to regulate exception requests inn order to decrease utilization and limit exceptions to truly extraordinary clinical situations. Perhaps OPTN can also consider instituting reasonable limits as to how many exceptions a transplant program can request over a determined period of time or how many patients can be listed by a program with an exception at any given time.”

Marco Ricci, M.D., Chief of Pediatric Cardiac Surgery, University of Iowa Health Care

OPTN public comment

“I am an Adult transplant cardiologist currently serving on a regional review board which I have done for >15 years. Often I am asked to review pediatric cases and am not especially qualified to evaluate the intricacies off all the issues. There are frequently not enough members in a given region with pediatric expertise and thus having a board made up entirely of pediatric heart transplant physicians would be highly desirable. The policy was defended by myself at the recent Region 2 Spring meeting in Baltimore.”

David Silber, M.D., Assistant Professor of Medicine, Penn State Milton S Hershey Medical Center

OPTN public comment

“As a heart recipient as an infant myself, I think this is a great idea. We should always be trying to find the best donors to the best match when it’s needed the most.”

Anonymous

OPTN public comment

“…Dear OPTN/UNOS, I am a board-certified Advanced Heart Failure and Transplant cardiologist at the Minneapolis Heart Institute in Minneapolis, Minnesota. I have been involved in selecting and managing hundreds of candidates for heart transplant and the care of post-transplant heart recipients and have served as a Regional Review Board (RRB) member on several occasions. I have served as our center’s RRB representative for the past year, and have reviewed hundreds of requests for listing by exception. A small minority of these requests are for pediatric candidates. Although I feel prepared and qualified to comment on some of the older (teen, e.g.) candidates without complex congenital disease, the bulk of the pediatric requests come from much younger children. The evaluation and management of these critically ill children is outside of my scope of expertise and I feel strongly that creation of a national pediatric heart transplant review board would be in the best interest of patients, hospitals, and physicians…”

Peter Eckman, M.D., Minneapolis Heart Institute

OPTN public comment