You may already know that the costs of the donor testing and surgery are covered by the recipients’ insurance. That’s true whether they have Blue Cross or any private insurance, Medicare, or Medicaid (usually—every state is different). That’s great, right? Absolutely, particularly if you have adequate paid sick leave and no additional childcare or travel and lodging expenses, that is, if the recipient’s transplant center is near you. And, fortunately, job security is now guaranteed for living donation under the Family and Medical Leave Act (FMLA).
But what if you don’t have much if any personal sick leave? The good news is that there are growing options. If you’re a federal employee, you’re entitled to up to 30 days paid leave a year for living organ donation. Most states have similarly begun to offer leave for their state employees, but not necessarily paid leave, so if you’re a state employee, ask the transplant center about the specific policy in your state. More than a dozen states are also starting to extend such benefits to private employees. The National Kidney Foundation has a terrific state-by-state list of donor leave laws and tax deductions/credits for living donors.
In general, in recent years (long after I donated to my son in 2006), several new sources of financial assistance have popped up, and several old sources are expanding eligibility and the expenses they cover.
Here are a few to check out:
*National Living Donor Assistance Center A federally funded program, NLDAC provides substantial financial assistance to potential living donors for out-of-pocket expenses for travel, food, and lodging, and assistance to low-income donors who do not have other compensation or reimbursement.
Donor Care Network Living donors who make $62,000 or less per year may be eligible for reimbursement of up to 4 weeks of lost wages. Also available: travel and lodging reimbursement, life and disability insurance, and legal representation. The program works with 12 transplant centers across the United States, so donors can get testing closer to home if needed.
Living Organ Donor Network Some transplant centers participate in this initiative that’s part of the American Foundation for Donation and Transplantation. It provides limited life/disability insurance to the living donors who get care at participating centers.
American Living Organ Donor Fund (ALODF) A nonprofit organization founded by a kidney recipient, its mission is to protect living organ donors from out-of-the ordinary medical and financial hardships through education and financial aid.
American Transplant Foundation ATF offers limited donor assistance grants, through a few transplant centers.
Renewal This orthodox Jewish charity provides information and resources for donors and recipients.
American Kidney Fund This huge nonprofit dedicated to fighting kidney disease mainly helps kidney patients but also provides small grants ($100/year) to living donors. It’s not much, but it’s something.
American Society of Transplantation (AST): Live Donor Financial Toolkit Although this is not a source of funds, it’s an invaluable practical resource to help potential donors in the donation process. Discusses costs in detail, what to expect, and risks; also offers ideas and links.
State-specific nonprofit programs are popping up all the time. Here are a couple of major ones. Ask your nurse coordinator about programs in the state where you or your potential recipient resides.
Georgia Transplant Foundation This Georgia nonprofit was founded in 1992. Living donors can apply for a financial assistance grant if either the donor or recipient resides in Georgia.
Iowa Anatomical Gift Public Awareness and Transplantation Fund Iowa residents who are donors can apply for assistance with certain expenses, up to $4,000.
* At this writing there is a movement in Congress, launched by Washington Rep. Jaime Herrera-Beutler, to expand NLDAC’s coverage to include lost wages. Rep. Herrera-Beutler’s husband donated his kidney to their toddler a few years ago. Contact your representative and ask him or her to support these important efforts. Be sure to share your own story with them.
If you know of other important sources of financial aid for living donors, please let me know: firstname.lastname@example.org