Billing and Insurance

Prospective living donors are told during their evaluation that the would-be recipient (and consequently, their insurance) will be responsible for all costs associated with the living donor’s medical treatment. The truth, however, is not so simple.

  • The recipient’s insurance may have maximum spending limits for the living donor’s post-surgical care.
  • The recipient’s insurance may not cover any living donor expense after a certain period of time.
  • The recipient’s insurance will not, most likely, cover the cost of any mental health services or medications related to depression and/or anxiety the living donor may experience.

Transplant centers often ask living donors to provide their health insurance information during the evaluation process. Why is this necessary if the recipient’s insurance is responsible for all related expenses?

Some insurance policies have a ‘Living Donor Benefit’. When transplant programs began accepting non-genetically related persons as living donors, spouses stepped forward more than anyone else. Since most spouses shared a health insurance policy, and most insurance polices had lifetime spending limits, some insurance bureaucrat decided to create an LD benefit to shift the cost of the living donor’s care from the recipient’s policy limit to the living donor’s. The rationale was that the recipient’s illness had probably resulted in far more medical bills than the ‘healthy’ living donor spouse. The Living Donor Benefit was a way to keep the recipient from reaching their lifetime spending limit. It’s not particularly benevolent to the living donor, however. 

Another reason often cited is the “coordination of benefits”. This is partially related to the Medicare benefit given to every person diagnosed with end-stage renal disease under the Social Security Act, Section 1881 [42 USC 139 rr]. In this scenario, if a would-be recipient also has private insurance, the Medicare benefit is viewed as ‘secondary insurance’. However, this overlap has nothing to do with the living donor, or the living donor’s health insurance.

The living donor simply shouldn’t be saddled with the financial burden of her/his care. However, there have been instances where insurance companies have required the living donor’s insurance be billed (and the charge rejected) before they will provide coverage. This defies common sense, but it does happen.  

Example: a living kidney donor suffered a hernia as a result of her donation, requiring surgical intervention. The recipient’s insurance had a $1500 deductible which the recipient, a relative, refused to cover. The living donor’s insurance had an even higher deductible. The transplant center, who caused the hernia, refused to repair it without compensation. In order to get the required surgery, the living donor was forced to pay for the recipient’s deductible out of her own pocket.

Nothing prohibits transplant programs from accepting uninsured living donors, so many do. Analysis of the 2003 National Inpatient Sample, a nationally representative 20% sample of US hospital stays revealed that 16.9% of living organ donors were uninsured. (87). The current number is most likely higher.

**If a living donor provides the transplant center with their insurance information, they risk being billed for services, including complications and follow-up.**

A Q&A with Wendell Potter, insurance insider and author here.

What a Prospective Living Donor Can Do.

1. Be evaluated and have the procedure at a transplant center near the living donor’s place of residence. This will allow the living donor return to the facility that is legally and ethically responsible for treating any complications, as well as avoid any billing conflicts (see Choosing a Transplant Center for more)

2. A prospective living donor should investigate her/his insurance and find out if there is a Living Donor Benefit. Also, some health insurance companies consider living donation an elective surgery and will refuse to pay for complications they deem to be related to the procedure. 

– NY Attorney General released the following statement allowing insurance companies to deny coverage to living donors in 2008.

– Of 167 living kidney donors from 1983-1995 at The Cleveland Clinic, as of 1997, 9% reported that being a kidney donor had a negative impact on the ability to obtain health, life or disability insurance.(4)

– NATCO’s statement on living donor insurability.

– A review of existing literature in 2007 revealed that 3-11% of living donors experienced problems with their insurance post-donation.(70)

3. A few transplant centers participate in LODN, the Living Organ Donor Network, which collects data on living donors’ quality of life post-transplant, and offers life, disability and medical insurance for living donors as a safety net for complications which may arise from being a living donor, including mental health coverage. 

According to the LODN website, living donors from non-member transplant programs can participate in the registry and insurance. Enrollment costs $550 per living donor.

Ask the Transplant Coordinator if the facility participates in LODN. If not, ask the facility to purchase a LODN policy, using the voluntary fee usually paid to UNOS on a living donor’s behalf. If possible, bring documentation regarding the LODN policy and the non-mandatory nature of the UNOS living donor fee to the appointment.

4. Investigate the recipient’s insurance coverage. Do they have private insurance, Medicare or both? Have a conversation with the would-be recipient regarding all financial obligations/ramifications. It is not considered valuable consideration (or payment) for a recipient to compensate a living donor for expenses incurred as a result of the donation.

Remember: A living donor is enduring an unnecessary surgery to relinquish a major and necessary organ as treatment for the recipient. Discussing and agreeing to a financial arrangement for a living donor’s expenses is the least a would-be recipient can do.

5. Find out how the recipient’s death would affect insurance coverage for the living donor.  Without the recipient, the insurance coverage no longer exists. How will treatment for complications and follow-up will provided if the recipient’s insurance is unavailable?

6. Ask for, in writing, the names of the people responsible for any complications that arise, for how long, and who (what organization) will pay for your treatment including any therapy or mental health support. Do not sign any waiver releasing the transplant center from responsibility for any short or long-term complications.

7. Many transplant centers encourage their living donors to see their primary care physicians for their six-month, one-year and two-year follow-up appointments. Even if they provide the living donor with billing instructions for the PCP, do not assume the expenses will be taken care of.

If you haven’t visited your PCP in over a year, they will most likely ask for a copy of your current insurance card. Do not provide it. If your PCP has your updated insurance information, give strict instructions that any costs related to the follow-up appointments are NOT to be submitted to your insurance company.

If you receive a bill, contact the Ombudsmen at your transplant center then email, fax or mail (with receipt) the bill with a cover letter explaining the charges are a result of your federally mandated living donor follow-up.

As detailed on our Legal page, the Social Security Act of 1972, Section 1881 [42 U.S.C. 139 rr], establishes a Medicare benefit for patients diagnosed with end-stage renal disease AND their living donors.

“…any individual who donates a kidney for transplant surgery shall be entitled to benefits under parts A and B of this title with respect to such donation.”

This benefit has never been altered or rescinded, but neither has it been implemented.