KIDNEY STORIES ON BLOGGER: 2019

WHY THE LIVING DONOR PROTECTION ACT IS IMPORTANT

INTRODUCTION

Recently, I received an IM on my Facebook Messenger. The writer told me she had a donor in the State of Indiana who wanted to donate a kidney to her and was a match. The problem was her potential donor's employer would only agree to give him 1 day to accomplish this task and expected him back at work. It put the donor in an untenable situation. He wanted to donate his kidney to the needy recipient to save her life but was risking the loss of his lifelong employment. Also, any insurance coverage he had through his work, would also be lost. She was concerned that she might lose her kidney donor. There was also the unstated fear of being unable to find another perfect match donor, leading to the unspeakable, inevitable result all potential transplant patients fear. [i]

THE ISSUE

The Living Donor Protection Act (LDPA) (S.511/H.R. 1224), was introduced by Senators Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR) and Representative Jerrold Nadler (D-NY) and Jaime Herrera Beutler (R-WA).[ii] The purpose of the LDPA is to protect living organ donors and to help remove barriers to donation. Barriers have including the loss/altering of employment and the loss/altering of insurance obtained through employment or otherwise directly from the carrier.[iii]

There is a need for kidney/organ donors, but there is a shortage of available living organ donors. Frequently, people are willing to donate, but discouraged from doing so due to problems with their employment and the potential changes or loss of necessary insurance coverage.

The issue is what steps need to be taken to overcome these obstacles?

THE NEED

Currently, there are approximately 80 million people in America, 1 in 3 who are at risk for Chronic Kidney Disease (CKD). [iv]

· CKD effects an estimated 37 million people in the U.S., 15% of the adult population, more than 1 in 7 adults[v];

· 90% of those who have CKD, don’t even know they have it![vi]

· In 2016, 726, 331 Americans had kidney failure, requiring either dialysis or a kidney transplant to survive[vii];

· Nearly 700,000 patients currently receive dialysis to replace their kidney function[viii];

· In 2016, 215,000 Americans were fortunate enough to live with a kidney transplant, Currently, 185,000 people are living with a kidney transplant.[ix];

· Currently, 94,789 Americans are on the waiting list for a kidney[x];

· Over 3000 new patients are added to the kidney waiting list each month. That’s one every 14 minutes[xi];

· 13 people die every day on average waiting for a kidney transplant. 3600 people died on the waiting list before ever receiving a kidney in 2018[xii];

· In 2018, only 21,200 kidney transplants were performed, only 1/3 of those (6,442) came from living donors. Living donors make a substantial contribution to increasing the number of transplants performed each year[xiii].

Obviously, with approximately, 100,000 people on the waitlist and transplanting only 20,000 people a year, we need to encourage more kidney donation to meet the need. There simply is no good excuse to lose 13 qualified kidney transplant candidates every single day.

THE BARRIERS

Like my friend, donors have faced discrimination obtaining, affording and maintaining life, disability or long-term care insurance. Higher premiums, cancellation or denial of coverage has all to frequently been based solely on the fact that they are kidney donors.

In 2015, a study by John Hopkins University of 1,046 kidney transplant patients, 186 donors who changed or initiated life insurance after donation, 25% reported difficulty in obtaining their desired coverage, 12% were denied altogether, 15% were charged a higher premium and 9% were told they had a pre-existing condition because they were kidney donors.[xiv] This is at odds with the facts that to donate an organ you go through rigorous examinations to meet strict health standards. Often, donors are in better health then the general population. Their life expectancy is similar to non-donors and in many cases exceeds that. Most donors go on to lead normal, healthy lives. There is no current study or medical evidence that insurance carriers are at increased financial risk for insuring living organ donors. There is no objective reason to charge higher premiums, deny or limit coverage because someone has donated an organ.[xv]

Outside of Idaho and New York, there currently are no legislative protection to prevent insurance discrimination against kidney/organ donors. Although last year the Department of Labor issued a regulatory opinion that they consider the Family Medical Leave Act, and it’s 12 weeks of leave to cover living donation, it is not law. The FMLA does not apply to businesses with less than 50 employees.[xvi]

Obviously, kidney donation requires a surgical procedure. This requires some time away from work for surgery and subsequent recovery. Outside of Idaho and New York, there currently are no legislative protection to prevent insurance discrimination against kidney/organ donors. Although last year the Department of Labor issued a regulatory opinion that they consider the Family Medical Leave Act, and it’s 12 weeks of leave to cover living donation, it is not law. The FMLA does not apply to businesses with less than 50 employees. All to frequently, this puts the donor’s job at risk. There is no fairness or equity in this situation resulting in discouraging someone from donating. Some donors have lost their jobs after donating to save the recipient’s life.[xvii]

Fear of a lack of insurance, higher premiums, altered employment status or job loss are barriers to a kidney/organ donor. When we should be taking every step we can to encourage kidney donation to prevent loss of the ability to remain on the list, or death from the failure to transplant, these barriers remain.

THE COST SAVINGS TO MEDICARE

There is one other aspect that must be discussed here, and that is the savings to Medicare to have someone with a transplanted kidney as opposed to being on dialysis.

· In 2016, Medicare spend over $89,000 per dialysis patient, per year;[xviii]

· [xix]But only $35,000 a year per kidney transplant patient[xx];

· Medicare Part B spends $2,303 on immunosuppressive drugs per year for kidney transplant patients[xxi];

· The removal of the employment and insurance barriers would result in an approximate savings of $55,000/year with a vast improvement in their quality of life.[xxii]

THE SOLUTION

The Living Donor Protection resolves these issues in 3 ways[xxiii]:

· It prohibits life, disability and long-term care insurance companies from denying or limiting coverage and from charging higher premiums to living organ donors;

· It amends the Family Medical Leave Act of 1993 to specifically include living organ donation as a serious health condition for private and civil service employees; and

· It directs HHS to update their materials on live organ donation to reflect these new protections and encourage more individuals to consider donating an organ.

The LDPA provides critical protection to living donors by:

· Removing economic roadblocks;

· Ensuring donors have enough time to heal;

· Ensuring donors can afford and maintain their insurance;

· Gives the organ donor more certainty and encouragement to donate an organ;

· Saves Medicare millions of dollars.

COSTS TO THE FEDERAL GOVERNMENT TO IMPLEMENT THE LDPA

According to experts, the proposed law has never received a CBO (Congressional Budget Office) score. The NKF has discussed its opinion here:

“2017 Living Donor Protection Act:

Q: Are the Living Donor Protection Act changes really important enough to result in more living donors?

A: These changes—which don’t cost anything to implement—address specific issues that we know are challenging living donors today. Magnanimous Americans are out there, are ready to become living donors – and by eliminating unnecessary trade-offs such as “job security vs. saving someone’s life” we can empower them to give the gift of life. Moreover, transplants are not only the best therapy for most patients, they are also significantly more cost effective (about $30,000 for a transplant vs. nearly $90,000 for dialysis each year).

Q: What is the life insurance industry’s position on this bill?

A: In both the previous Congress and this current Congress, there has been zero opposition from the insurance industry regarding this legislation. In fact, our organizations and more than a dozen other groups who have endorsed it are unaware of any pushback from any entities whatsoever.

Q: What’s the status of that immunosuppressive drug coverage bill?

A: The Comprehensive Immunosuppressive Drug Coverage Bill was legislation widely supported by the kidney and transplant communities in several prior Congresses. The bill has not been re-introduced in this Congress.

Q: Does the Living Donor Protection Act cover just kidney donation, or other kinds of live donation?

A: The bill would cover live donors who are donating every type of organ. However, live kidney donation is by far the most common type of living donor transplant.

Q: What is the expected cost of the Living Donor Protection Act?

A: The sponsors anticipate that this is a no-cost bill.

Q: How did you develop these potential savings estimates?

A: It is important to recognize that this data is simply a model, not a prediction per se, but it highlights that increasing access to living donor transplantation is the right thing to do for patients and could portend advantages from a Medicare cost perspective. This particular estimate looked at the number of people who currently receive transplants from living donors who have non-Medicare insurance nationwide and calculated what effect increasing that number by 10% per year for 10 years could save by preventing these transplant recipients from going onto the Medicare ESRD program due to kidney failure. The lower amount ($250 million) reflects what Medicare would avoid paying for the average cost of dialysis care only; the higher amount ($780 million) reflected.

From GOA Report 2014

Congressional Budget Office (CBO)
Cost Estimates for H.R.1224 [116th]Close

As of 12/20/2019 a CBO Cost Estimate for this measure has not been received.
[xxiv]
About CBO Cost Estimates
CBO produces cost estimates for select bills and resolutions. Bills for which the Library has received CBO Cost Estimate data link to the CBO Cost Estimates. CBO Cost Estimates can be searched from CBO's Cost Estimates Search page.”

STATE ACTION OF THE LDPA

There are several States’ Laws that are patterned after the proposed Federal LDPA Law. To date, there 15 States and DC that have some type of Donor Leave Law that impact state employees. The Donor Leave Laws offer state employees up to 30 days leave (paid or unpaid) for acting as a living organ donor. These states include: Arkansas, California, Colorado, Connecticut, Hawaii, Louisiana, Maine, Minnesota, Nebraska, New York, Oregon, Pennsylvania, South Carolina, West Virginia, and Wisconsin.[xxv] 20 States have enacted tax deductions or credits to living donors.

Currently, there are 12 states that have some version of the LDPA. Those states include Arizona, Arkansas, California, Colorado, Idaho, Illinois, Kansas, Maine, Maryland, New York, Oklahoma, and Oregon.[xxvi]

CONCLUSION

The barriers to kidney/organ donation have been serious enough to prevent people from donating. The potential loss/alteration of employment, status or benefit may prevent reasonable dedicated persons from a life-saving kidney/organ donation. This is devastating to both the donor and the recipient. The loss/altering of insurance benefits, without honest justification is also an incredible barrier to organ donation. The need for kidney donation is great, with almost 100,000 people on the waiting list and last year transplanting 20,000 and only 6440 living kidney donors, what is required is more protection for kidney donors and less devasting barriers.

The Living Donor Protection Act is the solution to these issues. It provides that the Family Medical Leave Act applies to living donors and that their employment cannot be terminated or altered in any way. Insurance companies cannot discriminate against the living donor by cancelling or altering the life, long-term care or disability coverage of the living donor. The savings to Medicare would be substantial if enacted. The costs to the Federal Government are non-existent to implement the Act. States have enacted their own version of the Act to protect both living donors and recipients. The bottom line is this: the LDPA should be enacted to enhance organ/kidney donation to save lives now! It is a no-brainer. We need to take steps to protect the brave kidney/organ donor, who generously wishes to give the Gift of Life to some worthy recipient. This is why we need the Living Donor Protection Act!

ENDNOTES

[ii]Nadler, Herrera Beutler, Gillibrand, Cotton Introduce Bipartisan Living Donor Protection Act to Protect Organ Donors, www.kidney.org/news/national-kidney-foundation-applauds-congressional-champions-legislation-to protect-living-organ, (February 14, 2019); nadler.house.gov/press-release/Nadler-herrera-beutler-gillibrand-cotton-introduce-bipartisan-living-donor-protection(February 15, 2019); https://www.healio.com/nephrology/transplantation/news/online/%7B90a026c2-d2d6-4252-abdb-54d12879c932%7D//congress-introduces-bill-to-protect-living-organ-donors (February 15, 2019).

[iii] Kribs, https://www.kidneynews.org/policy-advocacy/leading-edge/the-living-donor-protection-act-of-2019-reintroduced-in-house-and-senate (2019).

Iv Tighe, Congress and Congressional Process, A Positive Force for Patients & Research Advancement, PPT, https://documentcloud.adobe.com/link/track?uri=urn%3Aaaid%3Ascda$3AUS%3Ab7fa3450-11b1-4bd0-a2ee-6ced1a3dd9bf (May 23, 2019); ASN, AAKP Join Forces to Advance Living Donor Protection Act, https://www.kidneynews.org/kidney-news/policy-update/asn-aakp-join-forces-to-advance-living-donor-protection-act (2019); 2019 Kidney Patient Summit Policy Talking Points (2019); NKF Infographic, 6^th Annual Kidney Patient Summit, Co-Sponsor and help pass: The Living Donor Protection Act (S.511/H.R. 1224) (2019); Support the Living Donor Protection Act, https://www.kidney.org/blog/kidney-cars/support-living-donor-protectiion-act (2019).

v. Chronic Kidney Disease in the United States, 2019, Chronic Kidney Disease Initiative, Centers for Disease Control & Prevention , https://www.cdc.gov/kidneydisease/publications-resources/2019-national-facts.html (2019); Advocacy and Public Policy Challenges By The Numbers, http://kidney.org/news/newsroom/factsheets/CKD-A-Growing-Problem (2019); Note: For complete sources/references, see NKF's Kidney Disease: The Basics fact sheet located at: https://nkf.egnyte.com/dl/DWdaLPWST6/

United States Renal Data System. 2018 USRDS annual data report: Epidemiology of kidney disease in the United States. Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases; 2018. Available at: https://www.usrds.org/reference.aspx

[2018 ADR Reference Tables; Volume 1; K. Healthcare Expenditures for CKD; Tab K.1; Column V, Row 35]

[2018 ADR Chapters; Volume 1; Chapter 7: Healthcare Expenditures for Persons with CKD; Spending for CKD and Related Chronic Comorbidities; Beneficiaries Aged 65 and Older; Fee-For-Service Medicare; line 9]

vi. Id., Chronic Kidney Disease in the United States, 2019, Chronic Kidney Disease Initiative, CKD is Common Among Adults, Fast Facts, Centers for Disease Control & Prevention , https://www.cdc.gov/kidneydisease/publications-resources/2019-national-facts.html (2019).

vii. Id., Chronic Kidney Disease in the United States, 2019, Chronic Kidney Disease Initiative, CKD is Common Among Adults, Fast Facts, Centers for Disease Control & Prevention , https://www.cdc.gov/kidneydisease/publications-resources/2019-national-facts.html (2019).

vii. Advocacy and Public Policy Challenges By The Numbers, http://kidney.org/news/newsroom/factsheets/CKD-A-Growing-Problem (2019); Note: For complete sources/references, see NKF's Kidney Disease: The Basics fact sheet located at: https://nkf.egnyte.com/dl/DWdaLPWST6/

[2018 ADR Reference Tables; Volume 1; K. Healthcare Expenditures for CKD; Tab K.1; Column V, Row 35]

viii. Id., Number of people in need of renal replacement therapy is rising, https://www.eurekalert.org/pub_releases/2019-12/e-nop121919.php (December 19, 2019).

ix. Advocacy and Public Policy Challenges By The Numbers, http://kidney.org/news/newsroom/factsheets/CKD-A-Growing-Problem (2019); Note: For complete sources/references, see NKF's Kidney Disease: The Basics fact sheet located at: https://nkf.egnyte.com/dl/DWdaLPWST6/; Organ Donation And Transplantation Statistics, https://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats (2019); McDonnell, Kidney Transplant, https://www.emedicinehealth.com/kidney_transplant/article_em.htm (2019).

x. Id.

xi. Advocacy and Public Policy Challenges By The Numbers, http://kidney.org/news/newsroom/factsheets/CKD-A-Growing-Problem (2019); Note: For complete sources/references, see NKF's Kidney Disease: The Basics fact sheet located at: https://nkf.egnyte.com/dl/DWdaLPWST6/

[2018 ADR Reference Tables; Volume 1; K. Healthcare Expenditures for CKD; Tab K.1; Column V, Row 35]

Organ Donation and Transplantation Statistics, https://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats (2019); McDonnell, Kidney Transplant, https://www.emedicinehealth.com/kidney_transplant/article_em.htm (2019).

xii. Id

xiii. Id., UNOS, 2018 transplants by organ, https://unos.org/transplant/

(December 24, 2019) (19,360).

xiv. Advocacy and Public Policy Challenges By The Numbers, http://kidney.org/news/newsroom/factsheets/CKD-A-Growing-Problem (2019); Note: For complete sources/references, see NKF's Kidney Disease: The Basics fact sheet located at: https://nkf.egnyte.com/dl/DWdaLPWST6/

[2018 ADR Reference Tables; Volume 1; K. Healthcare Expenditures for CKD; Tab K.1; Column V, Row 35]

xvi. Experiences obtaining insurance after live kidney donation

https://onlinelibrary.wiley.com/doi/full/10.1111/ajt.12819 (July 20, 2014).

xvii. 2019 Kidney Patient Summit Policy Talking Points (2019); Mitchell, Could Donating a Kidney Put Your Life Insurance at Risk?, https://www.bestlifequote.com/blog/could-donating-a-kidney-put-life-insurance-at-risk/ (May 29, 2019) (“And if you work for an insurer, and you’re reading this, and in the unlikely instance where your company does discriminate against donors, you have everything backwards. Instead of shying away from them, you should be going to the kidney donors to ask if they have life insurance, and if they don’t, you should be trying to get them to sign up.”)

xviii. 2019 Kidney Patient Summit Policy Talking Points (2019).

xviii. Id.

[xvii] Id.

[xviii] Advocacy and Public Policy Challenges By The Numbers, http://kidney.org/news/newsroom/factsheets/CKD-A-Growing-Problem (2019); Note: For complete sources/references, see NKF's Kidney Disease: The Basics fact sheet located at: https://nkf.egnyte.com/dl/DWdaLPWST6/

[2018 ADR Reference Tables; Volume 1; K. Healthcare Expenditures for CKD; Tab K.1; Column V, Row 35]

US Renal Data System 2019 Annual Data Report: Epidemiology of Kidney Disease in the United States

EXECUTIVE SUMMARY, https://www.usrds.org/2019/view/USRDS_2019_ES_final.pdf (2019).

xix. Id. University of California, San Francisco, The Kidney Project,

Creating a bioartificial kidney as a permanent solution to end stage renal disease, Statistics, Costs, https://pharm.ucsf.edu/kidney/need/statistics (2018) (Medicare spending for ESRD patients is at $35 billion in 2016.

Hemodialysis care costs the Medicare system an average of $90,000 per patient annually in the United States, for a total of $28 billion.

Spending for transplant patient care is $3.4 billion.); United States Renal Data System. 2018 USRDS annual data report: Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2018.

Publications based on USRDS data reported in the Annual Data Report or on the USRDS web site or supplied upon request must include the above citation and the following notice: The data reported here have been supplied by the United States Renal Data System (USRDS). The interpretation and reporting of these data are the responsibility of the author(s) and in no way should be seen as an official policy or interpretation of the U.S. government.

Kidney X Innovation Accelerator Statistics Accessed 9/19/19; NKF Statement on Landmark Legislation Signed by Oklahoma Governor to Protect Living Organ Donors, https://www.kidneyx.org/; https://www.kidney.org/news/nkf-statement-landmark-legislation-signed-oklahoma-govenor-to-protect-living-organ-donors (April 11, 2019) (“Living organ donation not only saves lives, it saves money. Each year, Medicare spends $87,000 per dialysis patient and less than half, $32,500, for a transplant patient.”

xx. Id.

xxi. Id.

xxii. Id.

xxiii. Nadler, Herrera Beutler, Gillibrand, Cotton Introduce Bipartisan Living Donor Protection Act to Protect Organ Donors, www.kidney.org/news/national-kidney-foundation-applauds-congressional-champions-legislation-to protect-living-organ, (February 14, 2019); nadler.house.gov/press-release/Nadler-herrera-beutler-gillibrand-cotton-introduce-bipartisan-living-donor-protection(February 15, 2019); https://www.healio.com/nephrology/transplantation/news/online/%7B90a026c2-d2d6-4252-abdb-54d12879c932%7D//congress-introduces-bill-to-protect-living-organ-donors (February 15, 2019).

xxiv.

[xxiv] NKF Interview (2014); H.R.1224 - Living Donor Protection Act of 2019, CBO Costs Estimates (February 14, 2019).

xxv. National Kidney Foundation, Donor Leave Laws and Tax Deductions/Credits for Living Donors, https://documentcloud.adobe.com/link/track?uri%3Ascds%3AUS%3A7c6e1564-06a0-4f36-988e-761e2f1d59a3 (2019).

xxvi. Id.

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WHY THE LIVING DONOR PROTECTION ACT IS IMPORTANT