Showing posts sorted by relevance for query nldac. Sort by date Show all posts
Showing posts sorted by relevance for query nldac. Sort by date Show all posts

Sunday, January 1, 2023

New York State's Living Donor Support Act (LDSA, S. 1594) was signed by Governor Hochul on Dec. 29

 Frank McCormick forwards this email:

From: Elaine Perlman

Sent: Thursday, December 29, 2022 5:44 PM

Subject: Governor Hochul Has Signed the Living Donor Support Act!

 "Hello!

I am delighted to inform you all that the New York State's Living Donor Support Act (LDSA, S. 1594) was signed by Governor Hochul today.

 New York is becoming the best state for organ donation!

 Thank you for your advocacy in support of this legislation. The LDSA will save more New Yorkers' lives.

 Waitlist Zero's Executive Director Josh Morrison wrote the legislation. State Senator Rivera from The Bronx and Assembly Member Gottfried from Manhattan sponsored the bill.

 This spring, a team from the NKDO, NKF, DOVE, LiveOn New York, and Waitlist Zero lobbied for the bill's passage in Albany. Soon after, the LDSA was unanimously passed by both houses.

 This new law creates the opportunity for New York's living donors to avoid going into debt to donate. Living donors will be reimbursed for their lost wages and out-of-pocket expenses. New York will be the first state in the country to offer this opportunity for donation to be cost neutral for donors.

 Currently the Federal Government only reimburses when both the recipient and donor make less than 350% of the poverty line (around $47,000). The LDSA will reimburse the lost wages of donors who make up to $125,000 as well as the costs of donation (travel, childcare, etc).

 In addition, the LDSA will ensure that all potential recipients will be educated about transplantation.

 There are currently 8,569 people on New York's transplant wait lists, 7,234 of whom are awaiting a kidney. With the LDSA, we anticipate that far more New Yorkers will benefit from a living organ donation.

Here is the press release.

On Tuesday, January 3rd from 4-5pm ET, we will have a virtual celebration and toast the passage of the LDSA! Here is our zoom link.

Please share this good news far & wide!

Best,

 Elaine

Director, Waitlist Zero "

***********

Because the National Living Donor Assistance Center (NLDAC) is a payer of last resort, the NY law will replace NLDAC for NY donors who do meet the means test, and so it will also allow the NLDAC budget to go further.

********

Update: Frank McCormick writes to alert me that, like the authorization for NLDAC,  the NY State law (https://www.nysenate.gov/legislation/bills/2021/S1594) "requires that the Program shall be payer of last resort..." I hope that this doesn't turn into a competition to be the payer of last resort in a way that might cause some NY donors to fall between the cracks, and not be reimbursed either by NLDAC or the State of New York.

Saturday, August 21, 2021

Introduction to NLDAC (the National Living Donor Assistance Center)

 I'm on the advisory board of the National Living Donor Assistance Center, which has recently gotten increased resources and mandate to financially support means-tested living kidney donors who have out of pocket expenses for travel, child care, and lost wages.  Nondirected donors are now also eligible for support. The idea is to remove financial disincentives for donation, and NLDAC aims to backstop other efforts, as a federally funded payer of last resort.

They are trying to spread the word, and have prepared a one minute video: Introduction to NLDAC

"Learn about support for people considering living organ donation. NLDAC helps eligible donors with travel, lost wages, and dependent care costs. Visit our website to learn more. Your transplant center can help you apply."

Sunday, January 21, 2024

Legislative proposals to help living kidney donors

 Martha Gershun brings us up to date on various proposed pieces of legislation to help organ donors and increase access to transplants.

Legislative Efforts to Support Living Kidney Donors,  by Martha Gershun, Guest Blogger

"As a member of the Expert Advisory Panel to the Kidney Transplant Collaborative, I have been honored to provide input during the development of the organization’s priority legislation, the Living Organ Volunteer Engagement (LOVE) Act.  This legislation would help build a comprehensive national living organ donor infrastructure that would support a national donor education program, create a donor navigator system, ensure appropriate donor cost reimbursement, collect essential data, and improve all aspects of living organ donation across the country, substantially reducing barriers that limit participation today.

Key provisions of the LOVE Act would:

  • Provide reimbursement for all direct and indirect costs for living donation, including lost wages up to $2,500 per week.
  • Provide life and disability insurance for any necessary care directly caused by donation.
  • Modify NLDAC rules so neither the recipient’s income nor the donor’s income would be considered for eligibility.
  • Provide for new public education program on the importance and safety of living organ donation.
  • Provide for new mechanisms to collect and analyze data about living organ donation to enable evidence-based continuous process improvement.

Numerous other federal proposals are also currently vying for support to address barriers to living donation on a national level.  They include:

Living Donor Protection Act (H.R. 2923, S. 1384)

  • Prohibits insurance carriers from denying, canceling, or imposing conditions on policies for life insurance, disability insurance, or long-term care insurance based on an individual’s status as a living organ donor.
  • Specifies that recovery from organ donation surgery constitutes a serious health condition that entitles eligible employees to job-protected medical leave under the Family and Medical Leave Act.

Organ Donor Clarification Act (H.R. 4343)

  • Clarifies that reimbursement to living organ donation is not “valuable consideration” (I.e., payment), which is prohibited under the National Organ Transplant Act (NOTA)
  • Allows pilot programs to test non-cash compensation to living organ donors.
  • Modifies NLDAC rules so the recipient’s income would no longer be considered for eligibility.

Living Organ Donor Tax Credit Act (H.R. 6171)

  • Provides a $5,000 federal refundable tax credit to offset living donor expenses.

Honor Our Living Donor (HOLD) Act (H.R. 6020)

  • Modifies NLDAC rules so the recipient’s income would no longer be considered for eligibility.
  • Requires public release of annual NLDAC report.

Helping End the Renal Organ Shortage (HEROS) Act

  • Provides a $50,000 refundable federal tax credit over a period of five years for non-directed living kidney donors.
############
And here's one more, from the Coalition to Modify NOTA



Tuesday, October 3, 2017

The effect of paying the travel expenses of living kidney donors: Schnier et al. on NLDAC

The National Living Donor Assistance Center (NLDAC) can only give a very little money to economically deprived kidney donors who are donating to economically deprived recipients. But that has an effect. Here's a recent paper:

SUBSIDIZING ALTRUISM IN LIVING ORGAN DONATION
Kurt E. Schnier, Robert M. Merion, Nicole Turgeon and David Howard, Economic Inquiry
Version of Record online: 30 AUG 2017
DOI: 10.1111/ecin.12488

Abstract
The current supply of deceased donor organs is insufficient to meet the growing demand for transplantable organs. Consequently, candidates for kidney transplantation are encouraged to find a living donor. In 2008, the Department of Health and Human Services began to reimburse donors' travel-related expenses via the National Living Donor Assistance Center (NLDAC). Using variation in transplant centers' applications for donor assistance, we use a difference-in-difference model to estimate the relationship between the NLDAC and living donor kidney transplants. We find that among participating transplant centers, the program increased the number of living donor kidney transplants by approximately 14%.

Sunday, September 27, 2020

Removing financial disincentives to living organ donation: HRSA publishes Final Rule

 The Health Resources and Services Administration (HRSA), Health and Human Services Department (HHS) has published its Final Rule in the Federal Register

Removing Financial Disincentives to Living Organ Donation--A Rule by the Health and Human Services Department on 09/22/2020

"SUMMARY: This final rule amends the regulations implementing the National Organ Transplant Act of 1984, as amended (NOTA), to remove financial barriers to organ donation by expanding the scope of reimbursable expenses incurred by living organ donors to include lost wages, and child-care and elder-care expenses incurred by a caregiver. HHS is committed to reducing the number of individuals on the organ transplant waiting list by increasing the number of organs available for transplant. This final rule is associated with Section 8 of the Executive Order (E.O.) 13879 titled “Advancing American Kidney Health,” issued on July 10, 2019, which directed HHS to propose a regulation allowing living organ donors to be reimbursed for related lost wages, child-care expenses, and elder-care expenses through the Reimbursement of Travel and Subsistence Expenses Incurred toward Living Organ Donation program authorized under section 377 of the Public Health Service (PHS) Act, as amended."

...

"The National Living Donor Assistance Center (NLDAC) [4] operates the living organ donor reimbursement program funded by HRSA's Reimbursement of Travel and Subsistence Expenses Incurred toward Living Organ Donation grants program. Under the authority provided under section 377 of the PHS Act, as amended, the program is operated via cooperative agreement. The program's purpose is to help remove financial disincentives for living organ donations. In adherence to the authority outlined in the PHS Act, the program's Eligibility Guidelines currently provide that “qualifying expenses” include those incurred by the donor and his/her accompanying person(s) as part of: (1) Donor evaluation, (2) hospitalization for the living donor surgical procedure, and/or (3) medical or surgical follow-up, clinic visits, or hospitalization within two calendar years following the living donation procedure.

...

"Through this final rule, the Secretary determines that reimbursement for lost wages, and child-care and elder-care expenses incurred by a caregiver, is appropriate for living organ donors who incur such expenses toward their organ donation."

*************

The final rule authorizes the National Living Donor Assistance Center (NLDAC) to expand the category of expenses that it can reimburse, for those who meet its income and other conditions.

I'm on NLDAC's Advisory Board, and at the present time I haven't heard that NLDAC's budget will be increased to fund the expanded expenses it is now permitted to reimburse.

Sunday, July 16, 2023

National Living Donor Assistance Center (NLDAC): I rotate off the advisory board

 After seven years, I'm rotating off the advisory board of the National Living Donor Assistance Center (NLDAC). During that time, NLDAC's ability to assist living donors increased substantially, and now includes some reimbursement for lost wages, for example.

 At our meetings I learned to appreciate some of the subtleties involved in the interaction between government regulation and organ transplantation.




Friday, April 3, 2015

There's no consensus on incentives for kidney donation, but maybe there is on removing disincentives

The discussion of whether there should be incentives for organ (particularly kidney) donation remains heated. But there seems to be a growing consensus that removing financial disincentives is important, ethical, and do-able. Here's a paper that I presume will be published jointly with the one in my previous post.

Living and Deceased Organ Donation Should Be Financially Neutral Acts
F. L. Delmonico, D. Martin, B. Domínguez-Gil, E. Muller, V. Jha, A. Levin, G. M. Danovitch andA. M. Capron
Article first published online: 31 MAR 2015
DOI: 10.1111/ajt.13232

"Introduction: The supply of organs—particularly kidneys—donated by living and deceased donors falls short of the number of patients added annually to transplant waiting lists in the United States. To remedy this problem, a number of prominent physicians, ethicists, economists and others have mounted a campaign to suspend the prohibitions in the National Organ Transplant Act of 1984  (NOTA) on the buying and selling of organs. The argument that providing financial benefits would incentivize enough people to part with a kidney (or a portion of a liver) to clear the waiting lists is flawed. This commentary marshals arguments against the claim that the shortage of donor organs would best be overcome by providing financial incentives for donation. We can increase the number of organs available for transplantation by removing all financial disincentives that deter unpaid living or deceased kidney donation. These disincentives include a range of burdens, such as the costs of travel and lodging for medical evaluation and surgery, lost wages, and the expense of dependent care during the period of organ removal and recuperation. Organ donation should remain an act that is financially neutral for donors, neither imposing financial burdens nor enriching them monetarily.
...
Pilot Experiments of Financial Incentives Are Fundamentally Wrong
"Proponents of financial incentives claim to be merely seeking pilot programs to test their proposals [2, 4]. However, an experiment that abandons a moral principle—in this case, the principle that the human body as such should not be treated as an object of commerce—cannot preserve that principle. There is no reason to perform the experiment unless the result can affect subsequent decisions; thus, conducting an experiment with organ payments only makes sense if policymakers are willing to suspend the prohibition on paying for organs as a permanent matter.

"Suspending the prohibition on organ sales for a certain period so a trial can be conducted would make reinstatement of the prohibition difficult to accomplish. Assuming that any trial would need to be conducted for a number of years to provide reliable information, the basic attitude of the population toward donation would be reshaped during the trial period towards an expectation of financial rewards and hence commercialized “donation.” If as a consequence, paying donors crowds out altruistic donation [10], such effects would likely persist after the pilot trial [11]. Moreover, if the benefits offered do not produce enough organs, the proponents are unlikely to abandon their efforts but will rather lobby to increase the value of the incentive and try again. Taking on the risks involved in such experiments seems difficult to defend, since the donation rates in countries that have prohibited payment exceed those in countries where payment is legal or tolerated. The latest confirmation of the deleterious effect of payment comes from the marked rise in living related and deceased donation in Israel following the enactment in 2008 of a law ending the practice of paying for Israelis to go to countries where they could get transplants with purchased kidneys [12].

"If pilot experiments of payments to organ donors are conducted in the United States, it would foster the resumption of programs of financial “gratuities” in the Philippines, India, Pakistan and Egypt where “the intersection of a high poverty level (which translates to a large number of individuals susceptible to exploitation) and a high corruption index (which translates to a high likelihood that exploitation of the vulnerable would occur)” [13].

"Finally, the advocates have never explained the details of such experiments—their length, the jurisdictions that would be involved, the comparator (historical data vs. an active “control” group in the same or another jurisdiction that would still be subject to existing law), or the metrics by which the results would be evaluated.

Removal of Disincentives to Donation Should Be a Priority
"The energies directed to the debate about financial incentives would be better utilized in finding ways to remove barriers to organ donation, in particular financial disincentives. For example, it has been estimated that living donors in the United States may incur on average $6000 or more in costs for travel expenses and lost wages [14]. During the recent recession, the rate of living kidney donations decreased in the United States because some potential donors could not afford to bear such expenses [15] and were either unaware of, or did not meet the requirements for, programs that (due to limited funding) cover some of but not all of donors' financial costs and losses [14].

"The removal of financial disincentives is not only ethically preferable but is also recognized as legitimate by the WHO Guiding Principles [16], other international standards [17, 18] and the laws in many countries [19], which differentiate between paying money for an organ as such and reimbursing donors for the expenses and financial losses they bear as a consequence of their gift. The costs of the potential donor's care from predonation screening to postoperative recovery, lost wages and the costs of care for those dependent upon the donor should be borne by whichever entity is paying for the transplant procedure (private insurance, Medicare, Medicaid, etc.). The payments may be made directly from that entity or through the transplant program but in no case should they come directly from the organ recipient. Financial provision should also be made for the maintenance of long-term follow up and treatment of any conditions related to the nephrectomy or partial hepatectomy, including any costs not covered by the donor's medical insurance. The aim should be to provide coverage to ensure the donor does not suffer an economic loss from medical complications.

"The Live Donor Community of Practice (LDCOP) of the American Society of Transplantation (AST) has recognized the need to identify effective strategies to improve access to LDKT/LKD and improve LKD education and evaluation processes. The LDCOP has suggested that “Expansion of the National Living Donor Assistance Center (NLDAC) is likely to have the most immediate and substantial impact on attenuating financial disparities in LKD” [20].

"Thus, if a donor's medical insurance does not provide complete coverage of costs related to the donation procedure, the additional insurance could be administered by the existing NLDAC and provided by the entity that is paying for the transplant procedure [21]. This can be done without creating a financial incentive of the sort that would arise were donors given general medical insurance that they would otherwise lack. We recognize that NLDAC does not currently provide for this donor insurance; so we have requested that a Task Force be convened by HHS Secretary Burwell to develop pilot programs for removing these financial obstacles to organ donation [22]. Complications related to the donor nephrectomy or partial hepatectomy are not difficult to identify. They include for example perioperative infections (wound, urinary tract, or pneumonia), an extremity deep vein thrombosis, depression in the weeks following the donation and conditions of later onset which treating physicians may attribute to the donor surgery, such as an intestinal obstruction. The LDCOP is reportedly underway with drafting codes of organ donor complications (such as ICD codes used by CMS).

"Donors should also be provided with life insurance to cover death as a result of being a living donor. The death should be attributable/associated with the donor procedure; and would be a readily recognizable complication of bleeding, pulmonary embolism, myocardial infarction, or sepsis (as has occurred following living liver donation).

"Discrimination against donors seeking to purchase their own health and life insurance has been reported [23] and must be outlawed.

"Making available reimbursement for the actual costs or losses incurred, regardless of donors' financial resources, would not enrich them but merely make donating a kidney a financially neutral act. Similarly, the families of deceased organ donors should not have to pay any expenses generated by posthumous donation, such as costs related to the evaluation of potential donor and organ suitability, or prolongation of the donor's time in an ICU to enable postmortem donation. Since covering expenses leaves living donors and the families of deceased donors in neither a better nor a worse financial situation than they would have been had they not taken part in the process of donating organs, there would be no need to modify NOTA's prohibition on paying for organs. When combined with the removal of other systemic barriers to donation and adoption of best practices in living donation, as recently recommended by the LDCOP [20], eliminating financial disincentives should produce a substantial and sustainable increase in the rate of kidney donation as experienced in Israel, but is also being implemented in Australia, Canada, and the Netherlands [12]."

Friday, July 26, 2019

Removing disincentives to kidney donation, by McCormick et al. in J.Am.Soc.Nephrology

Here's the latest paper in an illuminating series on the costs and consequences of kidney donation and transplantation:

McCormick F, Held PJ, Chertow G, Peters T, and Roberts J.  Removing Disincentives to Kidney Donation: A Quantitative Analysis J Am Soc Nephrol 30: ccc–ccc, 2019. doi: https://doi.org/10.1681/ASN.2019030242 is:



I'm fortunate to be on McCormick's distribution list for email updates on matters related to kidney transplantation, and here's how he introduced and summarized this paper (the table of cost estimates is at the very bottom):

"Friends,
About two years ago, Economics Nobel Laureate Alvin Roth observed that since no-one in the transplant community seemed to be opposed to removing disincentives to kidney donation, the community should unite behind accomplishing that goal.  Our just-published article -- “Removing Disincentives to Kidney Donation: A Quantitative Analysis” -- lays out the consequences of pursuing that consensus objective.  It identifies seven disincentives facing living kidney donors and a single disincentive facing the families of deceased donors. 

The seven disincentives to living donors are listed in column 1 of the table below.  Columns 2 - 5 show estimates of the magnitudes of some of these disincentives made by earlier researchers.  Column 6 indicates our own best estimates of all of the disincentives, and Column 7 specifies the government actions needed to remove these disincentives without violating the National Organ Transplant Act.

Note that the disincentives to living donors total almost $38,000, which is much larger than generally assumed.  This is a substantial deterrent to kidney donation by living donors and goes a long way toward explaining why, even though about 125,400 patients were diagnosed with kidney failure in the U.S. in 2017, most of whom could have benefited from a kidney transplant, only 5,811 patients (4.6%) received a kidney from a living donor.
It follows that if the government could remove all of these disincentives by compensating donors, it could substantially boost kidney donations.  We estimate total donations from both living and deceased donors would increase by about 12,500 per year (63%).  That would cut the waiting list for transplant kidneys (currently numbering about 93,000 patients) in half in about four years.

We estimate removing all the disincentives would require an initial government outlay of only about $0.5 billion per year.  But this investment would quickly be recovered because (a) the long-run cost of transplantation is much less than for dialysis and (b) the government pays most of the costs of both.  So taxpayers would wind up saving a net $1.3 billion each year.  Much more importantly, society would enjoy a net welfare gain of about $14 billion per year, reflecting the great value of the additional donated kidneys to recipients and the savings from these recipients no longer needing expensive dialysis therapy. 

The timing of this article is fortuitous because there is currently great interest in Washington in proposals to remove disincentives to organ donation.  Indeed, on July 10, President Trump issued an executive order stating: “Within 90 days of the date of this order, the Secretary [of the Department of Health and Human Services] shall propose a regulation to remove financial barriers to living organ donation.”
               
Frank



The URL for the just published article: McCormick F, Held PJ, Chertow G, Peters T, and Roberts J.  Removing Disincentives to Kidney Donation: A Quantitative Analysis.  J Am Soc Nephrol 30: ccc–ccc, 2019. doi: https://doi.org/10.1681/ASN.2019030242 is:





This is the fourth in a series of articles aimed at reducing the kidney shortage and thereby saving tens of thousands of lives each year.  The previous three were:

1.             Held PJ, McCormick F, Ojo A, Roberts JP.  A cost-benefit analysis of government compensation of kidney donors.  Am J Transplant 16: 877885, 2016.         
This article laid out in great detail (13 Supplements) all of the costs and benefits of compensating kidney donors, showing it would confer a net benefit on society of about $46 billion per year and would save taxpayers about $12 billion per year.

2.       Held PJ, McCormick F, Chertow GM, Peters TG, Roberts JP.  Would government compensation of living kidney donors exploit the poor? An empirical analysis.  PLOS ONE, November 28, 2018. 
This article presented evidence that the poor would not be exploited by government compensation of kidney donors.  Indeed, the aggregate net benefit to the poor would increase to $12 billion per year from only $1 billion per year currently.

https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0205655&type=printable

 

 

3.       McCormick F, Held PJ, Chertow GM.  The Terrible Toll of the Kidney Shortage.   J Am Soc Nephrol 29: 2775–2776, 2018.

This editorial argued that the shortage of transplant kidneys is causing the needless premature deaths of about 43,000 Americans each year (118 per day), the same death toll as from 85 fully loaded 747s crashing each year.  This is a much larger number than had previously been assumed. 






Table 1
Disincentives to Kidney Donation Facing Living Donors



(1)

Disincentive


Estimated Magnitudes of Disincentives
(Adjusted to U.S. prices and standard of living in 2017)



(7)

Proposed Government Action To Remove
 the Disincentive
(2)

Gaston          et al.      (2006)
(3)

Becker – Elías
 (2007)
(4)

Rodrigue
 et al.  
 (2016)
(5)

Przech
 et al.    (2018)
(6)

McCormick – Held
 et al.
 (this study)   

1
Travel to, and lodging near, a transplant center



$4,313

--

$1,945

$1,653

$3,122


Expand current NLDAC program to include donors of all income levels

2

Loss of income while recovering from surgery

$3,631

$5,118

$4,368

$5,118

Expand current NLDAC pilot program to include donors of all income levels, providing donors with a tax credit of $5,000

3

Cost of home/ dependent care


--


--


--


$5,592


$5,592

Include cost of home/ dependent care in NLDAC program, providing donors with a tax credit of $6,000

4

Risk of dying during kidney removal

$2,951

$6,723

--

--

$1,860

Provide donors with a $5 million short-term life insurance policy

5

Pain and discomfort of kidney removal

$6,414

--

--

--

$6,414

Provide donors with a tax credit of $6,500


6

Decrease in the long-term quality of life


$23,250



$10,085



--


--


$7,910
Provide donors with an insurance policy covering death, disability, and long-term health problems due to donation

7

Concern that a relative or close friend may need a kidney in the future


--


--


--


--


$7,728

Promise to provide a kidney in the future for a specific person in exchange for a donation now

Total

$36,928

$20,439

--

--

$37,745