Organ Gap: More Women Donate and They Pay for It

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http://womensenews.org/story/medicine/141115/organ-gap-more-women-donate-and-they-pay-it

Organ Gap: More Women Donate and They Pay for It
By Elisa Gordon

Many potential donors are not poor enough to get assistance from the National Living Donor Assistance Center. Yet they are still struggling to make ends meet so that they can donate to help their family or friends in need of a transplant.
 
We know about the wage gap and the gender gap of inequity in so many disciplines from journalism to STEM fields. But what about the organ donation gap?

Sixty percent of living kidney donors in the United States are women. And 60 percent of patients with kidney failure are men. And so the majority of costs associated with donation--both physical and fiscal--are on women.  Similarly, most living donors are women in many other countries such as Switzerland, China, and India.

Living kidney donation seems to foster gender and financial inequalities that reinforce traditional gender income disparities. As most living kidney donors are women, they are the ones undertaking the greatest financial risk.

Many married women are giving kidneys to their spouses. When considering all of the 655 kidney recipients who received a transplant from their spouses last year in the United States, 74 percent of them were men who received a living donor kidney transplant from their wives.

But only 26 percent of recipients who received a transplant from their spouses were women that same year, according to the Organ Procurement and Transplantation Network/United Network for Organ Sharing.

If you look at this gender divide in donation rates from a financial framework, as more living donors are women, more women than men bear a greater financial burden.  Technically, all of the living donor's care is paid for by the recipient's insurance, including the medical, surgical procedure and recovery care.

The intention is that living donors can help save or improve another person's life without worrying about financial repercussions. That is not always the case.

Hidden Costs Pile Up

Insurance does not necessarily cover the day-to-day expenses that donors incur for donor evaluation, hospitalization for donation, and medical follow-up and clinic visits. Those costs may include lost wages, travel and parking, lodging or child care.

These expenses mount up. Living kidney donors pay, on average, about $5,000, and even as much as $20,000 in out-of-pocket expenses, as reported recently in the journal, Transplantation.

Given the growing organ shortage, with more than 101,000 patients awaiting a deceased donor kidney transplant, finding ways to remove such financial disincentives to enable living donors to donate is a leading priority in the transplant field.

The National Living Donor Assistance Center (NLDAC), an initiative jointly sponsored by the Health Resources and Services Administration and the American Society of Transplant Surgeons, covers some living kidney donors' expenses of travel, lodging and meals, but not lost wages. The center pays up to $6,000 for a period of time up to two years following donation.

Limited Eligibility for Assistance

This assistance is not easy or automatic. Donors are eligible for assistance from NLDAC only if they cannot get reimbursement for their expenses from the kidney recipient, federal or state compensation programs, insurance, or a prepaid health service provider.

They are also eligible if the total household incomes of the donor and recipient are below 300 percent of the poverty level, with exceptions for financial hardship.

That total household income level is less than $35,010 for a household of one, or $71,550 for a household of four for the 2014 tax year. Some have suggested that fear of lost wages or even job loss from taking time off work for donating may deter some people from donating.

Federal and state laws vary in offering tax deductions and credits for organ donation, and paid and unpaid leave from work after donating.

For instance, Illinois permits state employees and public employers to take time off work with pay for donating an organ, according to the donor leave law. But New York permits state employees both paid leave for organ donation donor leave and state tax deductions up to $10,000 for travel, lodging, and lost wages from the donation. Because such state laws vary, financial disparities to living donors are reinforced by geography.

Brakes on Commercial Incentives

Thirty years ago this year, the National Organ Transplant Act of 1984 ruled that there cannot be any "valuable consideration" given to living donors. This means that you can't pay someone to incentivize them to donate.

Organs cannot be for sale. It is an ethical choice not to commercialize the transaction.

But there's a distinction between incentivizing and just helping donors recover their expenses incurred from donating. The NLDAC program aims to help offset these expenses. But many potential donors are not poor enough to get NLDAC assistance. Yet they are still struggling to make ends meet so that they can donate to help their family or friends in need of a transplant.

Not surprisingly, lower income levels of living donors were found to be a major driver of the decrease in living donation rates over the past decade, according to a recent article in Journal of the American Society of Nephrology.

Many in the transplant field are actively lobbying Congress to amend the National Organ Transplant Act to remove financial disincentives to donate. Women donors stand the most to gain by such change. Until policymakers amend the National Organ Transplant Act to remove these roadblocks, healthy women donors will continue to disproportionately face financial pressures.

Policy makers need to recognize that changing the National Organ Transplant Act will help to reduce the financial expenses incurred by living donors, as well as help to reduce gender inequities in donation itself.

Elisa Gordon is a medical anthropologist and conducts research on ethical issues in organ transplantation and donation. She is Vice-Chair of the Ethics Committee of the United Network for Organ Sharing (UNOS); the views expressed in this article are the author's own and do not necessarily reflect the views of UNOS.