Educational Guidance on Patient Referral to Kidney Transplantation

Educational Guidance on Patient Referral to Kidney Transplantation

OPTN Minority Affairs Committee (9/2015)

Purpose

This educational guidance is intended to raise awareness among referring physicians about current trends in the field of kidney transplantation and provide education on identifying patients who are appropriate to be referred for transplant evaluation. The goal of this document is to promote early referral to transplant, explain the barriers to timely referral, and describe the steps patients and providers can take to improve referral patterns.

Background

Kidney transplantation is the treatment of choice for patients with advanced chronic kidney disease (CKD) and end stage renal disease (ESRD).1, 2 Kidney transplantation, as a therapy for ESRD, improves both patient survival and quality of life as compared to dialysis3 and over time, can provide a societal benefit through the reduction of the total cost of medical care.4 The benefits of transplantation extend to ESRD patients regardless of age, gender, or ethnicity, as well as those with common comorbid conditions, including diabetes and hypertension.5 With advances in surgical technique, immunosuppression, and post-transplant care, criteria for kidney transplantation have evolved dramatically.6,7,8 Advanced age and conditions such as obesity and vascular disease are no longer viewed as absolute contraindications. Many patients previously deemed unsuitable are now considered acceptable candidates for transplant.

The determination of transplant candidacy is often a complex and difficult process that requires considerable resources. Transplant centers use a multidisciplinary approach involving the transplant surgeons and physicians, coordinators, social workers, financial counselors, nutritionists, psychologists, referring physicians, and the patients. Often, additional consultants are involved as necessitated by the specific patient’s situation. However, data suggest that not all qualified candidates are referred for evaluation as potential kidney recipients and that many are referred late in the progression of their disease.9 Delayed referrals are known to occur with ethnic minorities, patients with lower socioeconomic status, and patients disadvantaged with regard to their geographic location. For example, although the incidence of ESRD in African Americans is four times greater than in their White counterparts, African Americans remain less likely than Whites to be referred for or undergo kidney transplantation.10,11

Preemptive transplantation is considered to be the most optimal treatment for ESRD as patients are able to receive treatment before experiencing the medical complications and debilitating effects of dialysis.12-14 Patients, particularly children and adolescents, who are transplanted preemptively have the highest graft survival and lowest mortality rates.13 Similar to ethnic inequities in referral, patients with higher socioeconomic status tend to be referred for preemptive transplantation at a higher rate than patients of lower socioeconomic status.13,15 Residents in rural areas represent an additional group with impaired access to transplantation. Rural patients may face barriers including the need to travel long distances to access a transplant center and difficulty in receiving follow-up care. Further, patients may also be affected by structural barriers to access, particularly in urban centers where patients may be waitlisted in areas with relatively few organ donors compared to the number of candidates for transplantation and thus face very long waiting times.16,17 Low referral rates may also be due to a lack of awareness of current guidelines for consideration of transplant candidacy.18 Each of these issues impacting timeliness of referral are important as late referral limits opportunities for patient education, living donor evaluation, and preemptive transplantation and increases the likelihood of death on dialysis.19

This educational guidance is intended to raise awareness among referring physicians about current trends in the field of kidney transplantation, particularly with regard to identifying

appropriate patients for referral for transplant evaluation. Every medically appropriate patient deserves an opportunity to be referred for kidney transplant evaluation in a timely manner in order to reap the significant lifestyle and survival benefits experienced from transplantation. The goal of this document is to promote early referral to transplantation, explain the barriers to timely referral, and describe the steps patients and providers can take to improve referral patterns.

This document is not intended to be construed as clinical or policy recommendations. The recommendations in the document were prepared following a review of transplant center acceptance criteria and reflect the general consensus of transplant programs. However, the criteria for exclusion and inclusion may differ significantly between transplant centers, so clinicians should contact their local transplant centers for more information regarding specific policies. If uncertain, clinicians should refer patients to their local transplant center for formal evaluation. The local transplant center will be able to determine if the patient is a suitable candidate for transplantation. In addition, patients and clinicians should be aware that they may seek additional evaluation at other transplant centers if they disagree with the decision of the local transplant program.

It is important to note that the field of transplantation is constantly evolving. New advances and additional data may alter exclusion and inclusion criteria. In addition, a patient’s medical status may also change substantially over time. Some patients may not be suitable for a transplant initially, but their condition may improve at a later time; conversely, some patients may develop new issues that at least temporarily preclude transplantation. Therefore, transplant candidacy should be reassessed at regular intervals.

For information on individual transplant center patient acceptance criteria see the Appendix to this document or visit the Members section.

Kidney Function

All patients with advanced CKD should be considered for transplant evaluation. The medical literature clearly demonstrates that kidney transplant is a superior form of kidney replacement therapy compared to dialysis. As such, referral to transplant should be the default care plan for CKD patients. There are no strict criteria for referral, but most patients with stage 4-5 CKD are appropriate for referral. In select cases, referral at higher levels of kidney function may be appropriate, particularly for patients requiring partial or total nephrectomy or those with rapidly progressive CKD. Early referral provides time for identification and evaluation of potential living kidney donors as well as improved patient education regarding transplant options.

Glomerular Filtration Rate (GFR)

Glomerular filtration rate (GFR) is the measure of kidney function and ranges from 0 to 140 mL/minute with measures ≥ 90 mL/minute considered normal. As GFR may vary from person to person, physician judgment is necessary to appropriately determine the rate of ESRD progression. Since individual patient management will also vary by physician, the GFR measurement should be kept broad with conversations between patients about their CKD status encouraged to be continuous. For example, in patients with a GFR of 30-59 mL/minute (Stage 3 CKD), the referring physician could begin to initiate a conversation about transplantation and prepare the patient for referral if the GFR approaches 30 mL/minute. Referral to transplant evaluation would preferably occur for patients with a GFR of less than 30 mL/minute. Patients progressing toward ESRD at a slower rate may appropriately be referred at a GFR of approximately 25-29 mL/minute but may need to occur at a GFR of 30 mL/minute or above if a patient is rapidly progressing toward ESRD. Physicians are encouraged to refer all medically appropriate patients to transplant once a GFR of less than 30 mL/minute is reached in order to

provide sufficient time to consider and become educated about transplantation, complete a transplant evaluation, and possibly locate a potential living donor.

The goal for referral should be that all potential candidates are referred for transplant at a GFR above 20 to avoid the development of comorbidities associated with dialysis and to allow the patient the maximum waiting time available.

Interest in Transplant‌

Conventional wisdom has been that patients should express some level of interest in transplantation prior to referral. However, prior to transplant evaluation, many patients have no basis on which to have an opinion about transplant. Expecting interest prior to information may not be a fair basis to decide on referral for evaluation, considering that for every other standard of care therapy patient interest is not a requisite criterion. For example, a patient referred for a heart catheterization is not expected to have knowledge of catheterization risk and benefits and alternatives. Rather, it is expected that the patient will be educated once he sees the cardiologist. Similarly, in transplant, interest necessarily follows information about the survival and quality of life benefits of transplant compared to dialysis. Interest in transplantation should be appropriately gauged after transplant education has been provided and should not be part of the decision to refer for kidney transplant evaluation.

For more information on transplant education and advocacy services, please see the Appendix

to this document.

Comorbid Conditions

Kidney transplant candidates often have comorbid conditions in addition to ESRD. Advances in pre- and post-transplant care have made transplantation an option for patients with significant comorbid conditions including coronary artery disease, peripheral vascular disease, chronic obstructive pulmonary disease, and chronic liver disease. Assessment of the impact of concomitant illness on perioperative and post-transplant morbidity and mortality is often the primary focus of the transplant evaluation, and the process often requires input from consulting services. Exclusion criteria based upon medical conditions vary significantly between programs. These criteria are often quite broad and listing decisions are often based on close review of each specific patient’s conditions. While such patients with severe comorbid illness may not qualify for a kidney transplant alone, they may be candidates for combined transplants such as heart-kidney or liver-kidney. Ideally, most patients should be allowed the opportunity to be evaluated for a transplant. The existence of comorbid conditions should not preclude referral for transplant evaluation.

Age

There is no consensus on an exclusion criterion based solely on age. In fact, nearly 20% of all transplant recipients in the U.S. are 65 years old or older. Data show a survival benefit for transplantation even for recipients of advanced age. Transplant outcomes with carefully selected octogenarians have been excellent.20-22 Most transplant centers evaluate older candidates and base listing decisions on medical criteria rather than age. Again, patients should be referred to their local transplant center for a full evaluation and determination of their medical qualification for kidney transplant.

Obesity

Criteria vary widely regarding obesity. Some centers will accept all patients irrespective of weight, while others have strict exclusion criteria based on their body mass index (BMI). Many programs prefer to assess patients on a case-by-case basis. Clinicians should contact their local center(s) for their specific policy. Some programs will coordinate transplant evaluation with referral to Bariatric Programs to address these issues. In addition, the possibility of transplantation may be just the motivation a patient may need to begin the difficult process of sustained weight loss.

Viral Infection

Patients with chronic infections such as Hepatitis B or C or well-controlled HIV can also be considered for transplantation at many transplant centers. Clinicians should contact the local transplant center for information on whether or not patients with any of these conditions are accepted as candidates. If there is any doubt as to the appropriateness of a patient for transplant referral, one should err on the side of the patient’s welfare, and refer.

Malignancy

While active malignancy is a contraindication for transplantation, patients with treated malignancy should be referred for evaluation. In fact, patients who are otherwise transplant candidates should be referred as soon as remission/cure is achieved. While such patients will need to wait for a period of observation to monitor for cancer recurrence, they can be listed and accrue waiting time during this interval. The waiting period before a candidate is appropriate for transplant will vary according to the specific type and clinical characteristics of the patient’s malignancy as well as the discretion of the listing transplant center. During the post-cancer treatment observation, such patients are placed in temporarily inactive status. This designation allows patients to gain waiting time, but they do not receive any kidney offers until they are placed back on the active wait list. Considering that, for some cancers, the waiting period after remission may be 5 years, a candidate could accumulate some or all of the waiting time needed to receive an offer from the deceased donor waiting list during that time.

Medical Non-Adherence

Medical non-adherence is an umbrella term that conveys the idea that a patient has been told to follow a recommended course of action with regard to his or her medical treatment, but has not done so. There are multiple reasons for non-adherence, many of which can be corrected. In addition, as clinicians consider patient appropriateness for transplant, some aspects of medical non-adherence do not matter in transplant considerations and should not be a barrier to referral.

Patient Lack of Understanding

Patient-provider communication is essential for good outcomes. At times, patients may simply not understand medical instructions. In relation to kidney transplant evaluation, non-adherence typically involves the failure to follow some component of the dialysis regimen, leading to concern for ultimate transplant outcomes if the patient is transplanted. Dietary instructions and volume restriction can often be difficult, particularly in patients who strive to follow a dialysis and diabetic or heart disease diet concomitantly. The same may be seen in adherence to anti- hypertensive or diabetic medications. Patients may not be educated about, or not be convinced of, the necessity of taking their medications consistently, despite the fact that they obviously have advanced CKD or ESRD. Many of these issues can be resolved with clear, repeated instruction and discussion with patients. In addition, some of the non-adherence issues (fluid restriction, limiting phosphorus) will not apply following transplantation and should not preclude referral for evaluation.

Patient Lack of Resources

Many patients cannot afford their medical care. As patients are reasonably just as proud as their providers, they may be reluctant to discuss their financial circumstances. Economic circumstances may make medications practically unaffordable and lead to morbidity such as hypertensive urgency and hyperphosphatemia. A frank and open conversation with patients may make clear the reason for non-adherence and offer the possibility of a solution.

Patient Non-compliance

As opposed to the general term medical non-adherence, non-compliance specifically denotes that a patient understands the medical instructions, and is capable of following the instructions,

but chooses not to. True non-compliance can be a difficult issue that will likely not resolve until the patient chooses. The main goal is not to excuse the non-compliant patient, but rather to alert providers that the patient may fall into one of the above categories, which need a different approach to correct.

With some patients, non-compliance such as dietary indiscretion on dialysis manifested by high phosphorus, blood urea nitrogen, and large intradialytic weight gains, is not relevant for transplant purposes and should not preclude a patient from being referred. After transplant, hypophosphatemia and volume depletion are more likely than the opposite. Similarly, not all patients who end their recommended treatments early are a risk after transplant. Just because a patient cannot comply completely with a dialysis regimen consisting of 3-4 hours per visit three times a week does not mean they will be non-compliant with a 30-minute weekly transplant visit. In the discussion of medical non-compliance, clinicians should keep in mind the behaviors that are likely surrogates for post-transplant behavior and the ones that are not.

Severe non-compliance is a contraindication to transplantation. However, for some patients, the desire for a kidney transplant may provide motivation to seek to modify their conduct. Such patients may benefit from referral for transplant evaluation. While patients would not typically be listed initially, transplant centers may work with the patient to establish a protocol or “contract” to which the patient must adhere to qualify for listing. Failure to adhere could also lead to removal from the wait list.

Clinicians should contact their local transplant center to discuss specific program policies regarding questions about individual cases.

Substance Abuse

Active substance abuse is a contraindication for transplantation. However, for some patients, the desire for a kidney transplant may provide motivation to seek treatment for their addiction. Such patients may benefit from referral for transplant evaluation. Such referral would be consistent with referral of alcoholic patients with cirrhosis for liver transplant even if they had yet to stop drinking. While patients would not typically be listed initially, transplant centers may work with the patient to establish a protocol or “contract” to which the patient must adhere to qualify for listing. Failure to adhere could also lead to removal from the wait list. Clinicians should contact their local transplant center to discuss specific program policies regarding such cases, but the default pathway for the patient should be referral.

Cognitive Impairment

Patients with cognitive impairment due to psychiatric illness or neurologic injury may be considered for transplant with sufficient support. Such determinations are often complex, and transplant centers will use multidisciplinary approaches with social workers, psychiatrists, neurologists, and others to assess such patients. All medically appropriate candidates should be referred for transplant. Again, there is significant variation between programs regarding such cases, so clinicians should contact their local center for their specific policies.

Financial Status

All potential transplant recipients should have adequate financial resources and support to cover the transplant surgery and hospitalization as well as medications, follow-up labs, and medical visits. This determination requires evaluation by a knowledgeable financial counselor and is typically done by the transplant center prior to medical evaluation.

For more information on securing financial assistance with transplantation, please see the

Appendix to this document.

Transplant Evaluation‌‌

During a typical transplant evaluation, the patient will meet with a transplant nephrologist, transplant surgeon, transplant coordinator, social worker, psychologist and potentially also a financial coordinator, pharmacist, and dietician. Testing typically includes cardiac testing (EKG, Echo, stress test, and may include cardiac catheterization, if deemed necessary), chest X-rays, blood tests, routine health screenings (PAP/mammogram for women; colonoscopy for patients over age 50), and a dental examination. Additional testing may be needed based on the patient’s medical history.

Timely referral of patients for transplant evaluation allows the patient an opportunity to learn more about the processes of transplantation including the evaluation, waitlisting, and post- transplant protocols. The patients may be overwhelmed at first with the volume of information presented, which is why it is essential for patients to be seen early to be able to receive the necessary information and understand their options.

Most transplant centers provide patients with easy-to-read brochures explaining the process of evaluation and waitlisting. This allows the patient the opportunity to learn about the kidney transplant surgery and to find out what to expect after transplant at a more leisurely pace.

Transplant centers are also making a concerted effort to ensure that the referring providers are kept abreast of their patient’s progress through the evaluation process.

Living Kidney Donation

In addition to deceased donor transplants, patients may also receive kidneys from living donors. Based on OPTN data, at the end of January 2013, there were over 95,000 patients waiting for a kidney transplant in the U.S., however, only about 11,000 deceased donor transplants were performed during 2013. The results of this organ shortage are long waiting lists in some geographic locations. Living kidney donation offers a viable alternative for individuals waiting on the national transplant waiting list for a kidney from a deceased donor. Living kidney donation also increases the existing organ supply.

The process of living kidney donation is coordinated by the local transplant center. Parents, children, siblings, relatives, spouses, or friends may donate a kidney to a family member if they are a match for the candidate.

Another type of living kidney donation is called paired exchange or paired donation. In this situation, there are at least two donor/recipient pairs where the donors are not able to donate to the directed recipients because of blood types or other compatibility issues.

Patients interested in exploring their options for obtaining a living donor for kidney transplantation should contact their local transplant program.

Multiple Wait Listing

National transplant policy allows a patient to register for a transplant at more than one transplant center. Generally, each transplant center will require the patient to undergo a separate evaluation, even if the patient is already listed at another hospital. Although there will be duplication of effort, the patient may still benefit if they receive a transplant sooner.

Being listed at more than one transplant center does not guarantee that an organ will become available sooner than for patients registered at only one transplant hospital.

Barriers to Transplantation

Although transplantation is considered to be the optimal therapy for ESRD, many factors pose as barriers to transplantation for patients who could receive benefit.23 The most significant barriers identified in the literature are identified and discussed below:

1. Timing of referral

2. Medical insurance

3. Financial issues and transportation

4. Availability of living kidney donors

5. Patient education and understanding of ESRD/transplantation

6. Provider understanding of the waitlisting and transplantation process

7. Other barriers

Timing of Referral

The ideal approach to the problem of CKD and ESRD is prevention through education and lifestyle changes. However, patients with progressive CKD should be proactively directed towards kidney transplantation. Multiple studies have shown that, compared to dialysis, kidney transplantation offers superior quality of life and improvement in patient survival.2,3 In this light, the default pathway for patients with advanced CKD should be transplantation. However, in current practice, physicians see that transplant options are not presented to patients in a timely manner.9,24

Perhaps the most significant barrier to preemptive kidney transplantation is timely referral for transplant evaluation. Currently, the majority of patients referred for kidney transplant evaluations are already on dialysis. Part of the consequence of these late referrals is that only 14.4% of adult kidney transplants performed in 2011 were preemptive.25 Late referral is not a sensible approach to maximize patient outcomes when one has a good understanding of the kidney transplant allocation system. Currently, an evaluated and medically and psychosocially approved patient can be placed on the waiting list and accrue waiting time at the time the estimated glomerular filtration rate (eGFR) or equivalent measure is less than or equal to 20 mL/minute.26 As such, providers should strive to have a patient evaluated and approved so that as soon as the eGFR is 20 mL/minute the patient can be activated on the waiting list.

The importance of early referral is two-fold. Given that patients typically initiate dialysis at a GFR of 10-15 mL/minute, early referral allows the patient to accumulate some and ideally all of their waiting time prior to initiation of dialysis. 26 Second, early referral allows the patient more time to look for potential living donor candidates, enhancing the chances that they will obtain a preemptive live donor transplant. Providers should also consider that many patients presenting for kidney transplant evaluation have multiple medical comorbidities and, as a result, may require multiple tests and procedures prior to being deemed medically acceptable for transplantation. This work-up can take months to complete, so early referral allows the patient to accrue the maximum amount of waiting time possible.

Medical Insurance

Another reason a patient may not be referred early, or decline referral, is lack of adequate medical insurance.13,16,23,27,28 Patients with CKD may be uninsured or insured under their local county health plan that does not have coverage for transplantation. A number of patients wait for initiation of dialysis, as ESRD will qualify them for Medicare29 and then they can consider transplant. Additionally, even with some insurance, many patients lack the necessary secondary insurance coverage required to cover pharmacy costs and medical costs the primary insurance does not cover. Providers should keep in mind, and educate the patients on, the following:

1. Though a patient is not currently covered for transplant, the patient can still be evaluated and accumulate waiting time. A transplant center can simply waitlist a medically appropriate patient and wait until either a live donor becomes available or dialysis begins (and Medicare coverage starts) to activate a patient, maximizing preemptive waiting time.

2. Receiving a kidney transplant also will qualify the patient for Medicare at the time of transplant, so aggressive referral can still be in the patient’s best interest.29

3. Obtaining secondary insurance can be challenging, but often one of the best resources for the patients is the transplant social worker present during the transplant evaluation. The social worker may be able to direct the patient to a number of available assistance programs, particularly those that assist with the cost of medications, for qualified patients.

4. A final issue is the concern of some patients of their Medicare insurance ending three years after transplantation (for patients that only qualify for Medicare on the basis of ESRD). Although there is no current solution for this issue, good patient education and advocacy can help make sure patients do not decline lifesaving therapy because of future insurance considerations.

Financial Issues and Transportation

In trying to promote early referral, physicians should recognize and appreciate the financial status of many patients. Many patients live at or near the poverty line30,31, and this has impact on the insurance issues discussed above. Limited financial resources may make a patient more reluctant to accept referral for transplantation.32-34 In addition, these limited resources may be manifested at times by lack of transportation, missing clinic visits, medication non-adherence, and failure to complete the post-transplant evaluation in a timely manner.35,36 Many transplant centers are located a significant distance away from their patients, and this can pose a challenge given the necessity of multiple clinic visits after transplantation. A number of transplant centers have satellite clinics that can help to ease the financial burden on patients while still delivering quality care. Health care providers should begin to have frank discussions with their patients to make sure there is a full understanding of financial limitations and that transplant is still promoted as the optimal care strategy.

Availability of Living Kidney Donors

Many patients have difficulty finding potential living kidney donor candidates.37 The issue is particularly acute for older transplant candidates and minority candidates.38,39 Older candidates may have similarly aged spouses and partners who may not be good donor candidates. In addition, they may have children with medical disease and be reluctant to allow their children to donate. African Americans in the general population are known to have higher rates of diabetes and hypertension than non-Hispanic Whites40,41, and this can translate into fewer medically approved donors.39 As a consequence, both groups may need longer times to find potential living kidney donors among their family, friends, and social networks. In addition, some patients who are initially reluctant to consider a family member as a donor may need to be educated as to the waiting times in their area and the likelihood of deceased donor transplantation to help them make choices with the best information. These goals are best facilitated by early referral to transplant evaluation.

Patient Education and Understanding of ESRD/Transplantation

An underappreciated barrier to early referral to transplant is patient understanding of the risks and benefits associated with dialysis and transplantation. Patient education is critical to achieving the goal of preemptive kidney transplantation in every medically appropriate patient. Patients need to understand that kidney transplant is not just an option, but is considered the standard of care therapy for ESRD. Patients need to truly understand the mortality risk associated with ESRD and dialysis.5 Patients need to know when they can start accumulating time on the transplant waiting list and understand why preemptive transplant can benefit them.13,19 Finally, patients need to have a realistic understanding of the waiting time in their area and how that impacts their likelihood of surviving long enough to receive a transplant.42 With this understanding, early referral to transplant is the most sensible approach to preserve patient health and minimize unnecessary dialysis-associated morbidity.

Provider Understanding of the Waitlisting and Transplantation Process

The provider is obviously critical to patient outcome, but a lack of understanding about the transplant process can lead to providers inadvertently becoming a barrier to optimal care.43 Even now, after more than 50 years of kidney transplantation, the last 25 with the same allocation structure, many providers do not understand the allocation system. Many providers still believe that a patient needs to be on dialysis prior to being considered for transplantation. Many providers know that time can accumulate at GFR < 20 mL/minute and still refer only after they see the GFR is below 20 mL/minute, losing time for their patients. Some providers hesitate to refer patients with medical comorbidities without considering that some patients might improve with transplant and that all patients will get worse without. A number of providers fail to refer even ESRD patients initiating dialysis, wanting them to “get used to” dialysis prior to referral, ignoring the 4-6 year median waiting times most patients encounter once waitlisted.

Some providers still mistakenly believe that patients who are doing “well” on dialysis are being best served, despite the higher mortality risk associated with dialysis.25

Provider autonomy is important, as is the patient-provider relationship. However, the decision that a patient is not a transplant candidate should ideally be made by a transplant center, not preempted before evaluation. Early referral to transplantation should be encouraged as the default pathway for patients. Providers should reinforce the importance of the primary care physician and nephrologist in promoting early referral to transplantation and being the first line for patient education. Providers should make sure they understand the current allocation considerations well enough to provide good information to patients and to reinforce the rationale for early referral.

There are a number of barriers to early referral for kidney transplant evaluation that result in limited preemptive transplantation and excess morbidity and mortality for patients. Many of these barriers can be overcome through patient and provider education and understanding of the transplant process. Such an understanding can optimize the outcomes for patients with advanced CKD and ESRD.

Other Barriers

Although there are a number of other barriers to successful kidney transplantation, a proactive approach on the part of patients and physicians can provide the best opportunity to address and overcome impediments to kidney transplantation. The first step to successful transplantation is getting the patient access to the transplant system through transplant referral. The more frequently early referral is considered the default pathway for patients with advanced CKD, the more likely patients will be able to receive the best kidney replacement therapy in a timely manner.

Transplant Education

Clinicians are encouraged to work with local transplant centers to advocate for providing transplant education to patients. There is currently a precedent for provision of transplant education which may be reimbursed through the federal government. Providers are incentivized

to provide transplant education to patients with chronic kidney disease, which is billed separately through specific coding/billing mechanisms.

The education can be provided by physicians and non-physician providers (nurse practitioners, clinical nurse specialists, and physician assistants) and hospital-based dialysis providers in rural areas only. Outpatient dialysis facilities may not provide this service.

For information on federally funded transplant education, please see the Appendix to this document.

Acknowledgements

The Minority Affairs Committee would like to acknowledge the following individuals, groups, and organizations for their contributions, review, and comment on this Guidance.

Joint MAC Subcommittee on Education and Awareness of Transplant Options Minority Affairs Committee

M. Christina Smith, MD, Henry Randall, MD, Lani Jones, PhD, MSW, Maria Lepe, MD, Remonia Chapman, Rosaline Rhoden, MPH, Sherilyn Gordon-Burroughs, MD, Stacey Brann, MD, Asif Sharfuddin, MD, Antonio Sanchez, MD, Bobby Howard, CCTSW, Dorothy Rocha, Terri , Stacey Brann, MD, Kelly McCants, MD, Yma Waugh, MBA, Winfred W Williams, MD

Minority Affairs Committee Chairs

Meelie S. Debroy, MD, Pang-Yen Fan MD, Silas P. Norman, MD

Living Donor Committee Representatives

William F. Freeman, MD, MPH, Tonya Bradford, PhD

Transplant Administrators Committee Representatives

Karen Berger, Vikram Acharya, BS, MPH

Patient Affairs Committee Representatives

Deepak Mital, MD, George Franklin

Kidney Transplantation Committee Representatives

Mark Aeder, MD, Noelle Dimitri, LICSW

National Kidney Foundation Representative

Dolph Chianchiano, JD, MPA

OPTN Transplant Partner Organizational Review and Feedback

AST – American Society of Transplantation

ASTS - American Society of Transplant Surgeons ASN – American Society of Nephrology

NKF – National Kidney Foundation

STSW- Society for Transplant Social Workers

NATCO – North American Transplant Coordinators Organization MOTTEP – Minority Organ Tissue Transplant Education Program AMAT – Association for Multicultural Affairs in Transplantation ANNA – American Nephrology Nurses Association

ACP- American College of Physicians

Minority Affairs Committee Staff

Deanna Parker, MPA, Wida Cherikh, Ph.D, Chinyere Amaefule, MHSA, Mesmin Germain MBA, MPH, Monica Colvin-Adams, MD, W. Ray Kim, MD

Disclaimer

The educational guidance presented in this manuscript was developed by multidisciplinary committees of the Organ Procurement and Transplantation Network (OPTN) along with considerable input solicited from relevant transplant and professional societies and associations. The information in this document is not intended to substitute for existing clinical practice in the assessment of ESRD patients for transplantation, but to provide overall guidance and general information for education and awareness.

Appendix‌

Frequently Asked Questions

1. Can a patient self-refer for transplantation?

   Yes, a patient can self refer to a transplant center for evaluation as a transplant candidate.

2. How long will it take for the patient to complete the medical work up?

   Most programs try to complete the transplant evaluation in less than 90 days. However, if the patient does not complete required testing, this may delay the timeline.

3. A patient has a GFR >25, but is not currently on dialysis - can the patient be worked up?

   Yes, a patient can be worked up at any GFR. A GFR 25-30 is the most opportune time for work up for a patient with rapid progression of their CKD. This allows time for the patient to receive education on transplantation and time to locate a suitable living donor for work up.

4. How long will it take for the patient to be transplanted?

   At the end of January 2013, there were over 95,000 patients waiting for a kidney transplant in the U.S., however, only about 11,000 deceased donor transplants were performed during 2013. The results of this organ shortage are long waiting lists in some geographic locations. The length of time it takes for a patient to actually become matched with a particular kidney and then transplanted depends on where the patient is listed but in most cases an average waiting time is 4-5 years. This is in contrast to the shorter waiting times of candidates who have received living donor transplants.

5. If the patient has had prior medical problems (i.e., cancers, etc.) how long would it take before he or she can receive a kidney transplant?

   Waiting time depends on the specific type of cancer, but patients should still be evaluated and can be waitlisted on hold while waiting the required 0-5 years following cancer remission.

6. Does the patient need insurance at the time of referral to transplantation?

   A patient should have insurance coverage and appropriate support for transplant. Following transplantation, taking immunosuppressive (anti-rejection) medications and medical follow up, is vital to the success of the organ. It is essential to have adequate insurance or other resources to cover these expenses. However, patients should not be excluded from transplant referral due to lack of insurance coverage. The Transplant Social Worker or Transplant Financial Coordinator can provide additional information on insurance coverage options.

7. Can a patient be listed at more than one center at the same time?

   Yes, a patient may be listed at more than one center at the same time.

8. Why does BMI matter?

Although a high BMI would not necessarily exclude patient from transplant candidacy, a high BMI may represent an additional mortality risk as well as practical surgical issues.

Transplant Center Information

For information on transplant programs across the US (by geographic region) please see the link below.

Patient Education and Advocacy

The following organizations may be able to provide patient education and patient advocacy services:

American Association of Kidney Patients (AAKP)

3505 E. Frontage Rd., Suite 315

Tampa, FL 33607

Phone: 800-749-2257

Fax: 813-636-8122

Info@aakp.org www.aakp.org

American Center for Transplant Resources (ACT)

1512 Arboretum Dr. Chapel Hill, NC 27514 Phone: 800-443-8633

Phone: 919-932-7845

Fax: 919-932-7847

American Organ Transplant Association (AOTA)

21175 Tomball Parkway #194

Houston, TX 77070

Phone: 713-344-2402

Fax: 713-344-9422

http://www.aotaonline.org/medication-assistance-program.html

American Society of Transplant Surgeons (ASTS)

2461 South Clark St., Suite 640

Arlington, VA 22202

Phone: 703-414-7870

Fax: 703-414-7874

https://asts.org/advocacy/patient-resource

HRSA Division of Transplantation Parklawn Building, Room 12C-06 5600 Fishers Lane

Rockville, MD 20857

Phone: 888-275-4772

www.organdonor.gov

Medicare Improvement for Patients and Providers Act (MIPPA) Transplant Education Reimbursement Program

Centers for Medicare and Medicaid Services

7500 Security Boulevard

Baltimore, Maryland 21244-1850

Phone: Medicare Service Center: 800-MEDICARE (800-633-4227) Phone: Medicare Service Center TTY: 877-486-2048

Website: www.CMS.gov

http://cms.hhs.gov/Medicare/Medicare-Fee-for-Service-Payment/ESRDpayment/index.html

Donate Life America

Phone: 804-377-3580

https://www.donatelife.net/

Kidney and Urology Foundation of America (KUFA)

1. West 47th Street, Suite 401 New York, NY 10036 Phone: 800-633-6628

   Fax: 212-629-5652

   www.kidneyurology.org

   The Kidney Transplant Patient Partnering Program

   Phone: 800-893-1995

   National Kidney Disease Education Program (NKDEP)

2. Kidney Information Way Bethesda, MD 20892

Phone: 866-454-3639

Fax: 304-402-8182

nkdep@info.niddk.nih.gov https://www.niddk.nih.gov/health-information/health-communication-programs/nkdep/Pages/default.aspx

National Kidney Foundation (NKF)

30 East 33rd St. New York, NY 10016

Phone: 800-622-9010

Phone: 212-889-2210

Fax: 212-689-9261

johnd@kidney.org www.kidney.org https://www.kidney.org/kidney-topics/becoming-living-donor

National Minority Organ and Tissue Transplant Education Program (MOTTEP)

2041 Georgia Avenue, NW Ambulatory Care Center, Suite 3100

Washington, DC 20060Phone: 800-393-2839

Fax: 202-865-4880

The Renal Support Network (RSN) Kidney Times

1311 N. Maryland Ave. Glendale, CA 91207

Phone: 818-543-0896

Fax: 818-244-9540

http://www.rsnhope.org/health-library/

Transplant Recipients International Organization (TRIO)

2100 M Street, NW, #170-353

Washington, DC 20037-1233

Phone: 800-874-6386

Phone: 202-293-0980

Fax: 202-293-0973

info@trioweb.org
www.trioweb.org

United Network for Organ Sharing (UNOS)

P.O. Box 2484 Richmond, VA 23218 Phone: 804-782-4800 Fax: 804-782-4817 www.unos.org

Financial Resources

Air Charity Network (ACN) 4620 Haygood Road, Suite 1 Virginia Beach, VA 23455 Phone: 800-549-9980

Phone: 877-621-7177

www.aircharitynetwork.org

American Kidney Fund

6110 Executive Blvd., Suite 1010

Rockville, MD 20852

Phone: 800-638-8299

Angel Flight Mid-Atlantic (AFMA)

Administrative Office

4620 Haygood Road, Suite 1 Virginia Beach, VA 23455 Phone: 800-296-3797

Phone: 757-318-7149

Fax: 757-318-9107

Children's Organ Transplant Association, Inc. (COTA)

2501 West COTA Dr.

Bloomington, IN 47403

Phone: 800-366-2682

Phone: 812-336-8872

Fax: 812-336-8885

http://cota.org/

Financing a Transplant

https://transplantliving.org/financing-a-transplant/

Georgia Transplant Foundation (GTF) 500 Sugar Mill Road, Suite 170A Atlanta, GA 30350

Phone: 770-457-3796

Fax: 770-457-7916

http://www.gatransplant.org/

Kidney Trust: FAP Program

The Kidney TRUST

1350 Bayshore Hwy, Suite 777

Burlingame, CA 94010

Phone: 877-444-2398

Phone: 866-399-7634

info@kidneytrust.org http://kidneytrust.org/what/financial-assistance/

Levi Goff Support Foundation, Inc.

P.O. Box 237

Science Hill, KY 42553 Phone: 606-423-1028

Medicare Hotline

Phone: 800-638-6833

National Foundation for Transplants (NFT)

5350 Poplar Ave., Suite 430

Memphis, TN 38119

Phone: 800-489-3863

Phone: 901-684-1697

Fax: 901-684-1128

info@transplants.org http://www.transplants.org/

National Living Donor Assistance Center (NLDAC)

2461 S. Clark Street, Suite 640

Arlington, VA 22202

Phone: 888-870-5002

Phone: 703-414-1600

Fax: 703-414-7874

NLDAC@livingdonorassistance.org www.livingdonorassistance.org

HelpHOPELive – Formerly National Transplant Assistance Fund (NTAF)

150 N. Radnor Chester Road Suite F-120

Radnor, PA 19087

Phone: 800-642-8399

Phone: 610-727-0612

Fax: 610-535-6106

info@ntafund.org
https://helphopelive.org/

Prescription Drug Assistance Programs

• Roche Patient Assistance Program

  800-772-5790

• Novartis Patient Assistance Program

  888-455-6655

• Novartis Transplant Reimbursement Information

  877-952-1000

• Astellas Patient Assistance Program

  800-477-6472

• Abbott Patient Assistance Program

800-633-9110

Search Assistance Funds

Phone: 888-999-6743

Phone: 800-627-7692

patientinfo@nmdp.org https://bethematch.org/

For more detailed information on kidney allocation rules, please access the OPTN website http://optn.transplant.hrsa.gov/governance/policies/

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