8-1-26

Friends,

My colleague, Philip Held, and I have long observed that patients with kidney failure are often poorly informed about subjects that are a matter of life and death for them. So we thought we would put together a list of reliable information sources for these patients (Section I). We also added a few personal observations of our own (Section II), and by transplant recipient Ward Kallstrom (Section III).

We found many excellent sources of information for patients with kidney failure. The bigger problem seems to be getting this information into the hands of the roughly 130,000 Americans who are diagnosed with kidney failure each year. Ideally, it would be offered to patients at the time they are diagnosed (or slightly before). Or dialysis centers could provide it to their patients. (In the U.S., Fresenius and Davita provide dialysis services to about 70% of dialysis patients, and both companies have a lot of information online.) Or there may be sites on social media that focus on patients with kidney failure or patients on dialysis. Please let us know any thoughts you might have on getting this information to patients newly diagnosed with kidney failure. In any event, Elaine Perlman has agreed to make the latest version of this information available on her web site at EndKidneyDeathsAct.org.

Frank

Section I. A list of 15 web sites that have an abundance of useful information for patients with kidney failure

1. National Kidney Foundation (NKF) (https://www.kidney.org/sites/default/files/kidneytransplant_updated.pdf ) ( https://www.kidney.org/about/kidney-disease-fact-sheet )

2. National Kidney Registry (NKR) ( https://www.kidneyregistry.com/for-patients/finding-the-best-kidney-match/ )

3. American Association of Kidney Patients (AAKP) ( https://aakp.org/center-for-patient-research-and-education/educational-brochures-and-resources/ ) ( https://aakp.org/wp-content/uploads/2020/08/Kidney-Transplantation.pdf )

4. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) ( https://www.niddk.nih.gov/health-information/kidney-disease/kidney-failure/choosing-treatment )

5. Scientific Registry of Transplant Recipients (SRTR) ( https://www.srtr.org/ ) ( https://www.srtr.org/transplant-center-search/ )

6. Next Step Next One ( https://www.nextstepnextone.org/patient-resources )

7. National Kidney Donor Organization (NKDO) ( https://www.nkdo.org/kidney-patient-resources/ )

8. Alliance for Paired Kidney Donation (APKD) ( https://paireddonation.org/ ) ( https://paireddonation.org/contact-us/ )

9. American Kidney Fund (AKF) ( https://www.kidneyfund.org/living-kidney-disease/just-diagnosed-kidney-disease)

10. Mayo Clinic ( https://www.mayoclinic.org/departments-centers/kidney-transplant/home/orc-20203197 )

11. Cleveland Clinic ( https://my.clevelandclinic.org/health/diseases/17689-kidney-failure )

12. University of California, San Francisco (UCSF) ( https://www.ucsfhealth.org/care/services/kidney-transplant-program )

13. IPRO End-Stage Renal Disease Network Program ( https://esrd.ipro.org/wp-content/uploads/2021/08/NWP-Transplant-Trifold-2021-Eng_inhouse_v5.pdf ) ( https://esrd.ipro.org/wp-content/uploads/2022/03/ESRD-LivingDonor_Flyer_3_508c_01242022.pdf )

14. Fresenius (https://aem.freseniuskidneycare.com/content/dam/fresenius-kidney-care/pdf/transplant-guide.pdf )

15. Davita ( https://davita.com/wp-content/uploads/sites/2/2025/04/davita-transplant-smart-booklet.pdf )

Section II. Personal Observations by Frank McCormick and Philip Held

1. The kidney shortage is much larger than is generally realized, and the implications for patients with kidney failure are more dire.1,2,3 Each year about 130,000 Americans are diagnosed with kidney failure. Yet only about 40,000 (31%) are put on the waiting list for a kidney from a deceased donor, and only 21,000 (16%) actually receive a deceased donor kidney. About 6,000 (5%) more receive a kidney from a living donor. The 79% of patients with kidney failure who do not receive a kidney transplant from either a deceased or living donor are fated to suffer an average of 4-5 years on dialysis as their health steadily deteriorates until they die prematurely. We estimate that more than 40,000 of them could have their lives saved each year if there were no shortage of transplant kidneys.

2. A patient with kidney failure can increase their chances of getting a deceased donor kidney by getting on the waiting list at more than one transplant center. (But since this does not increase the total number of deceased donor kidneys available, this reduces the number of deceased donor kidneys available for other patients with kidney failure.)

3. It is much better for patients to try to find their own living donor. Several organizations help patients do this:

• National Kidney Foundation’s Big ask Big Give program (https://www.kidney.org/transplantation/live-events)

• National Kidney Donor Organization (https://www.nkdo.org/kidney-patient-resources/)

• Kidney Solutions ([email protected] )

• The Living Kidney Donors Network (lkdn.org)

• Transplant Village offers a monthly Zoom Donor Champion Program. It is affiliated with Northwestern. However, all patients are welcome even if they are not a patient at Northwestern.

• Many transplant centers offer a Donor Champion Program of some kind. Patients should ask their centers what programs are available.

4. If you find a willing living kidney donor, but you are not medically compatible with that donor (blood type, human leukocyte antigens, etc.), your donor can participate in a kidney exchange to find another donor who is medically compatible with you. The National Kidney Registry (NKR) is the leader in arranging these exchanges, but the Alliance for Paired Kidney Donation (APKD) has also done a lot of good work.

5. The basic cause of the kidney shortage is the prohibition against compensating organ donors in the National Organ Transplant Act (NOTA).4 Therefore, given current technology, the only way to greatly reduce the kidney shortage is to find some way to compensate kidney donors. The End Kidney Deaths Act (introduced in the 119th Congress as H.R. 2687 and currently pending in committee) (https://www.endkidneydeathsact.org/) is an important first step in that direction. It advocates compensating non-directed kidney donors with a refundable tax credit of $10,000 per year for five years ($50,000 total). However, to completely end the kidney shortage and save the lives of more than 40,000 patients with kidney failure each year, the compensation would have to be increased to about $100,000 per donor and extended to all living kidney donors.1

References for Personal Observations by Frank and Philip

1. McCormick F, Held PJ, Chertow GM. The Terrible Toll of the Kidney Shortage. Journal of the American Society of Nephrology, December 2018. Publisher · Free full text (PMC)

2. McCormick F, Held PJ, Chertow GM, Peters TG, Roberts JP. Projecting the Economic Impact of Compensating Living Kidney Donors in the United States: Cost-Benefit Analysis Demonstrates Substantial Patient and Societal Gains. Value in Health, 2022;25(12):2028–2033. doi.org/10.1016/j.jval.2022.04.1732 Commentary: Garrison LP. Paying for Kidneys: Reflections on Welfare Economics, Political Economy, and Market Design. Value in Health. Read

3. McCormick F. The Government Could Save More than 40,000 Kidney Failure Patients from Premature Death Each Year by Compensating Living Kidney Donors. Video presentation, University of Chicago Symposium on “The Future of Living Donor Kidney Transplantation,” May 7, 2022. https://www.youtube.com/watch?v=KfoTwgsLVMY&list=PLr3ivtn-IcXRHsaq_LYS1OMD27ep-oAGM&index=5&t=1737s

4. McCormick F, Held PJ. How to End the Kidney Shortage. Regulation, Spring 2023. cato.org/regulation/spring-2023/how-end-kidney-shortage

Section III. Personal Observations by Transplant Recipient Ward Kallstrom

1. If possible, begin your search prophylactically — before starting dialysis – as soon as your GFR hits 20. Pre-dialysis transplants avoid at least one surgery, and you’ll most likely be stronger, and hence have a faster recovery.
2. Study srtr.org to identify at least one good transplant center close to you. (Choose “kidney”, search for a center, then click on “pdf” to get detailed data regarding one-year success rates, average wait times, and much more.)
3. If you are mobile and have the means, identify at least one non-local center that you can get to without too much trouble. Best would be one that is near to friends and/or family (which may help with finding lodging). I think three centers is a good number because there may be bumps in the road that make one or two of them not work out –as happened to me!
4. Make sure that the transplant centers you apply to will accept your insurance.
5. Before committing to any transplant center, research the cost of renting a nearby short-term furnished apartment (ideally with washer/dryer/dishwasher) to be sure you can handle it. VRBO or Air B&B may be good choices except in cities (e.g., New York) that regulate them like hotels. Also be alert to broker’s fees, taxes, cleaning fees, and other costs that may not be disclosed on rental ads. Transplant patients must stay within 30-60 minutes of the transplant center for several weeks after discharge. (Public transit is often cheaper and sometimes faster than rental cars/cabs/Uber; if it’s available, be sure to ask the center whether you’ll be able to use it.) Hotels and motels may not work because, depending on the transplant center, you may be unable to dine out or even get takeout for a few weeks; and hotels are a lot more expensive than apartments.
6. If one or more of the centers you apply to isn’t local, make sure that your local hospital’s transplant nephrology team will be able to provide care after you return home from your surgery.
7. Keep in touch with your transplant coordinators – whenever you leave town, have a medical problem, etc. Always keep them informed about your availability and condition!
8. You never know when you’ll get “The Call.” So have a “go bag” packed and ready, as though you were about to head out on vacation for a couple of weeks.
9. Don’t give up!