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The National Living Donor Assistance Center Helps Living Donors With Donation Costs

Introduction:

I recently did an interview with Marie-Claire Walters of the National Living Donor Assistance Center (NLDAC).

Marie-Claire is the Assistant Coordinator of the National Living Donor Assistance Center. She has been with the NLDAC team since 2017, and is responsible for the NLDAC’s website content, newsletter, and educational materials. She has worked on several pilot programs to expand the reach and scope of this program. She is also fluent in Spanish, and provides dedicated support to Spanish-speaking donors, recipients, and transplant professionals at NLDAC.

The National Living Donor Assistance Center (NLDAC) is a federally funded program that helps eligible living organ donors with their travel, lost wages, and dependent care expenses. This program is not intended to promote or encourage donation. Funds are not provided as a gift or reward for being a donor. Funding is only available to donors who cannot receive reimbursement of these costs from any of the following:

• The recipient of the organ

• Any State compensation program, under any insurance policy, or under any Federal or State health benefits program, or

• An entity that provides health services on a prepaid basis

Their mission is to reduce the financial disincentives to living organ donation. To this end, they operate a nationwide system that provides reimbursement of travel and subsistence expenses, lost wages, and dependent care expenses to people being evaluated for and/or undergoing living organ donation. Priority is given to those who could not otherwise afford to donate.

From their website,  “Many people would like to donate an organ to a family member or friend, but would have trouble paying for related expenses—like transportation, lodging, food, and dependent care—that are not covered by insurance, especially if they lose wages during their recovery from donation surgery. The costs of the process can be a burden for donors and recipients; for some, these costs might make living organ donation impossible.

The National Living Donor Assistance Center exists to provide access to transplantation for those who want to donate, but face financial barriers to doing so.

This program is administered by the Division of Transplantation (DoT), Healthcare Systems Bureau (HSB), Health Resources and Services Administration (HRSA), United States Health and Human Services (HHS) through a cooperative agreement with the University of Kansas (KU) and the American Society of Transplant Surgeons (ASTS).”

The Types of Assistance Given By NLDAC

There are three things NLDAC covers for eligible donors:
• Travel expenses

• Lost wages

• Dependent care expenses
They can help with evaluation, surgery, and follow-up trips, but donors need to apply and be approved before the trip they would like help with. Applications must be approved and funded before the donation surgery.

The most NLDAC can provide for a donor’s travel, lost wages, and dependent care expenses is $6,000.

How Many Donors Can NLDAC Help on a Recipient’s Behalf?
This depends on the type of transplant that is occurring:

• Kidney recipients: one donor at a time with a maximum of 3 donors evaluated.

• Liver recipients: one donor at a time with a maximum of 5 donors evaluated.

• Lung recipients: two donors at a time with a maximum of 6 donors evaluated.

The Rules for Travel Expenses
Donors who are approved for help with travel expenses receive a controlled value card, which is like a credit card with restrictions, to pay for their transportation (airfare, gas, rental cars, taxis, etc.), hotel, and meals on trips to the transplant center. Donors can also use this card for the travel expenses of a support person who accompanies them. NLDAC can only cover travel within the U.S. and its territories. They are restricted to the maximum amount of $6,000.

How Lost Wages are Reimbursed
NLDAC reimburses lost wages by direct deposit or check. After a confirmed appointment, they deposit the reimbursement in the donor’s bank account or mail a check. Donors can request reimbursement of the wages they lose during:

• Evaluation trips, up to 3 days

• Recovery from donation surgery, up to 4 weeks

• Follow-up trips or rehospitalization, up to 2 weeks

To receive reimbursement of lost wages, donors must be working for pay at the time of their donation surgery or other trip, and submit clear documentation of their current wages. NLDAC can help donors with lost wages that are not covered by paid time off or short term disability.

Dependent Care Expenses
Some people who are considering living organ donation have caregiving responsibilities for a child, disabled adult, or elderly person. Donors who are approved for help with dependent care expenses can receive up to $420 per week for child-care expenses and up to $504 per week for adult-care expenses caused by their donation. Donors attest to the dependent care expenses they will incur, and then receive funding for that expense by direct deposit or check. Donors can request reimbursement of these expenses on the same trips described in the lost wages section, above.

What Are The Center’s Standards for Eligibility?
About 70 % of household are eligible!
There are two sets of requirements—one for the donor and recipient, and one for the transplant center where the donation occurs.

The donor and recipient must:
• Be U.S. citizens or lawfully present residents of the U.S. or its territories
• Have their primary residence in the U.S.
• Sign the attestation form, indicating they are in compliance with Section 301 of the National Organ Transplant Act (NOTA), as amended (42 U.S.C. 274e) which stipulates in part “[i]t shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.”• Travel from their primary residence to the transplant centerThe transplant center where the donation occurs must:
• Attest to its status of good standing with the Organ Procurement and Transplantation Network (i.e., it does not have a designation of “Member Not in Good Standing”)• Be registered with NLDACWho Can Apply for Assistance?
Individuals considering becoming a living organ donor can apply for help with their travel expenses, lost wages, and dependent care expenses from NLDAC if they cannot be reimbursed for these costs by their recipient, a state program, or an insurance company. There is no direct assistance for transplant recipients through this program, though their information is required for the donor’s application.

Living donors of what type of organ can apply?
Kidney, Liver, Uterus, Intestine and Lung.

What Are the NLDAC’s Residency Requirements?

The donor and recipient must both be US citizens or lawfully present residents, and have their primary residence in the US or its territories

How Is Eligibility Determined?
Eligibility is determined based on the transplant recipient’s household income. The recipient’s yearly household income should not be more than 350% of the current HHS Poverty Guidelines. If the recipient’s household income is higher, but they would have trouble paying for their donor’s expenses, they must complete and submit a financial hardship waiver worksheet with their application. NLDAC does not currently limit donor household income, but will prioritize funding for donors whose household income is within these guidelines if there is not enough funding to approve all eligible applications.

How Does The Center Define a Household?
For the purposes of NLDAC eligibility, a household is defined as a person living alone or a group of people living together. They do not have to be related. Under this definition, a person who lives with others but lives independently and shares basic living expenses, like roommates, can be a separate household. People who cannot be considered a separate household are spouses living together, parents living with their natural, adopted, or stepchildren, or children living with their natural, adopted, or stepparents, unless the child is 22 years or older.

Why Is The Recipient’s Household Income Considered?
Authorizing legislation mandates that the recipient’s ability to pay must be taken into consideration as part of this program. The National Organ and Transplant Act (NOTA) of 1984 has always provided that the recipient may reimburse the donor for certain expenses associated with donating an organ. The establishment of NLDAC does not change this. NLDAC was established to assist donors, and priority is given to individuals who would otherwise not be able to donate because neither the donor nor recipient can afford the expenses associated with the donor’s travel (e.g., airfare, lodging, meals) and/or lost wages.

Who May Not Be Eligible?
The Organ Donation and Recovery Improvement Act outlines three situations in which NLDAC cannot provide funding, even if the applicant meets the other eligibility requirements. Specifically, we can only provide funds to donors whose expenses cannot be reimbursed by their recipient, an insurance company, or a state program.

• Reimbursement by the recipient: The National Organ Transplant Act allows organ recipients to pay for their living donors’ travel, lodging, and lost wages in connection with the donation. NLDAC must assess the recipient’s ability to help their donor before approving an application.

• Reimbursement by an insurance company: Some insurance policies provide a travel benefit for their clients’ living donors. Recipients should check with their insurance company before submitting a NLDAC application to see what support is available for their donor. NLDAC can work with donors who receive partial reimbursement of their expenses from an insurance company to cover unreimbursed expenses. Donors to recipients who are fully commercially insured by UnitedHealthcare can apply for reimbursement of travel expenses from UnitedHealthcare through NLDAC’s website.

• Reimbursement by a state program: Donors and recipients who live in Iowa may be eligible for reimbursement of travel expenses through the Anatomical Gift Public Awareness and Transplantation Fund. NLDAC cannot accept applications for reimbursement of travel expenses from Iowa residents or donors to Iowa residents due to the existence of this alternative reimbursement system. These donors may apply for reimbursement of lost wages and dependent care expenses from NLDAC.

Are Non-Directed Donors Eligible?
An anonymous, non-directed donor is someone who donates an organ without choosing their recipient or knowing who the recipient is. In reviewing these donors’ applications, NLDAC does not require or consider any information about the recipient.

NLDAC’s eligibility guidelines, which were established by the Health Resources and Services Administration and published in the Federal Register, and The Final Rule authorizing the use of federal funding can be consulted.

How To Apply
The application process is a 3 step process:

• Complete and sign a NLDAC Application Worksheet and Attestation Form, including a W-9 only for donors who request wage or dependent care reimbursement;

• For the Self- Employed or Independent Contractor: Attach a copy of one or more of the following documents to verify household income like a federal income tax return, pay stubs, W2, Social Security Award letter or other. If the recipient’s household income is greater than 350% of the Federal Poverty Guidelines, the recipient must complete and submit a financial hardship waiver worksheet;

• Give these documents to your transplant coordinator, social worker or other transplant professional. Recommending these documents are submitted 6-8 weeks before travel or surgical procedure)

Who Submits the Application to the NLDAC?
A transplant center professional (usually a living donor advocate, social worker, nurse coordinator, or financial coordinator) will file the application on behalf of the prospective living donor. NLDAC cannot accept applications directly from patients.

When Should the Application be Submitted to the NLDAC?
We recommend applying well in advance of any trips you’d like NLDAC’s help with. NLDAC requires 10 business days to process applications where the recipient’s household income is within our guidelines (preference categories 1 and 3), and at least 15 business days to process category 2 and 4 applications, where a financial hardship waiver is requested. If the recipient needs a liver transplant urgently and cannot wait 10-15 business days for surgery, the application can be reviewed and approved or denied in 1-2 business days. NLDAC cannot approve an application after the donor’s surgery has taken place, or reimburse expenses incurred before the application was approved.

Who Reviews the Application, Checks Eligibility and Approves or Denies Funding ?
At least two members of the NLDAC operations team review each application, approving or denying them based on the eligibility criteria and preference category. If a waiver for financial hardship is requested, the Health Resources and Services Administration (HRSA) will make the final determination. HRSA’s decision is not subject to appeal.

Explain Why Both the Living Donor and the Recipient Must Sign the NLDAC Attestation Forms?
It is illegal to buy and sell organs in the United States. NLDAC requires the living donor and transplant candidate (recipient) sign a statement (NLDAC attestation form) affirming they have been informed of what constitutes “valuable consideration” and that they are in full compliance with NOTA. Section 301 of the National Organ Transplant Act of 1984 (“NOTA” or “Act”), entitled “Prohibition of organ purchases,” imposes criminal penalties of up to $50,000 and five years in prison on any person who “knowingly acquire(s), receive(s), or otherwise transfer(s) any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.” 42 U.S.C.§ 274e (2000). The attestation forms also authorize the transplant center to provide information about the donor and recipient to NLDAC.

Where Does the Center’s Funding Come From?
The Center received a Grant from the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) in the amount of $8,150,000.

If I receive assistance from the NLDAC, and my state allows for a tax deduction for donor expenses, may I still claim a deduction for those expenses
No, this is considered income to you. Expenses covered by NLDAC cannot be claimed as donor out-of-pocket expenses, and cannot be deducted on income tax returns. However, if you have out-of-pocket donation-related expenses not covered by NLDAC, you may report those. Certain states allow state employees additional vacation or sick time if they are living donors.

How is Eligibility Determined if the Living Donor is Participating in a Paired Exchange Program?
Yes, you remain eligible with your swapped for donor. You still apply with your originally intended but incompatible recipient.

What Happens If I Use Funds From the NLDAC and I Am Unable to Donate?
Many factors may prevent an intended and willing donor from proceeding with the donation. Such circumstances include present health status of the intended donor or recipient that would prevent the transplant or donation from proceeding, perceived long-term risks to the intended donor, circumstances such as acts of God (such as major storms or hurricanes) or other unforeseen events outside the intended donor’s control. In such cases, the intended donor and accompanying persons may receive reimbursement for the qualified expenses incurred.

Has the NLDAC ever had to use the deferral process?
The NLDAC has NEVER used the deferral process in its history.  The deferral process refers to a situation in the event that there is not enough funding for NLDAC to approve all eligible applicants, priority will be given to donors whose household income is within 350% of the HHS Poverty Guidelines, and those who demonstrate financial hardship. The NLDAC has always had enough money for all of it’s eligible candidates.

Conclusion
The National Living Donor Assistance Center provides financial assistance to NLDAC provides assistance to living kidney donors and other solid organ donors, who wish to donate, but are restricted by associated costs like travel expenses, lost wages and dependent care costs. Considering there are almost 100,000 people who are desperate for a kidney on the transplant list and last year, only around 20,000 people were transplanted, with over 3,000 new patients are added to the kidney waiting list each month and 13 people dying each day while waiting for a life-saving kidney transplant, the NLDAC group may be the lifesavers that many are looking for.

References

National Living Donor Assistance Center Website
https://www.livingdonorassistance.org/;

About Us
https://www.livingdonorassistance.org/About-Us/Mission-Background;
How the NLDAC Helps
https://www.livingdonorassistance.org/How-to-Apply/How-NLDAC-Helps;

Eligibility Guidelines
https://www.livingdonorassistance.org/How-to-Apply/Eligibility-Guidelines;

FAQs
https://www.livingdonorassistance.org/Resources/FAQs#a-1110

Organ Donation and Transplantation Statistics
https://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats