Q&A on Living Donation

Table of Contents:

1.
General Information on Living Donation
2.
Where Do I Start?
3.
The Evaluation Process
4.
Making the Decision
5.
Financial and Insurance Issues
6.
The Surgery
7.
What to Expect After Donation
8.
For Transplant Candidates

To print the entire Q & A, click here

 

5. Financial and Insurance Issues

  1. Who pays for living donation?
  2. Will my health or life insurance coverage be affected by donation?
  3. Is there any assistance available for lost wages, travel and lodging?
  4. Resources and Additional Information

 

Who pays for living donation?

Potential donors should talk with their transplant hospital about financial and insurance issues. The hospital will have a "Transplant Social Worker" and/or "Transplant Financial Counselor" who can advise potential donors about their options, along with what expenses will be incurred by the recipient's insurance, the donor or the hospital.

Generally, the recipient's Medicare or private health insurance will pay for the following for the donor (if the donation is to a family member or friend). Donors should always coordinate their tests with the transplant coordinator at the hospital in case there are any exceptions:

  • Evaluation to determine if the person is a good candidate for living donation
  • Donation surgery
  • Post-operative care

However, the following expenses generally wouldn't be paid by either the recipient or the donor's insurance:

  • Lost wages during the donor's recovery. Time off from work is not covered by Medicare or private insurance. However, donors may be eligible for sick leave, state disability and the Family and Medical Leave Act (FMLA).
  • Travel expenses. If you are traveling to a transplant hospital away from home, you can incur expenses for travel, lodging expenses during evaluation and recovery, phone calls to home, childcare, etc. Some transplant hospitals offer free or low-cost hospitality houses for you and your family–be sure to ask about your options.
  • Expenses for treatment of unrelated conditions that are discovered during the evaluation process
  • Some follow-up expenses may also not be covered, so it's important to discuss these matters with the transplant center. The financial counselor and/or transplant social worker at the hospital can answer any questions you have about the cost of donation.

Again, potential donors should talk to the transplant hospital about their unique situation.

You can also request a free booklet from the United Network for Organ Sharing entitled "What Every Patient Needs to Know." The booklet has an extensive section on financial issues for both donors and recipients, including social services, insurance coverage, Medicare and Medicaid coverage, fund raising campaigns and other possible sources of assistance. Contact UNOS at http://www.unos.org/contact/index.php or 888-894-6361 to request a copy.

Will my health or life insurance coverage be affected by donation?

There have been some instances in which living donors had difficulty changing insurance carriers after the donation, due to higher premiums or a pre-existing waiting period. It is not known how commonly these issues have arisen.

If you are considering donation, talk to the financial counselor and social worker at the transplant center to find out if donation will affect your health or life insurance coverage.

If you already have insurance, check your insurance contracts carefully to see if living donation would affect your current policies. You might also want to consult with a lawyer who is knowledgeable about insurance law.

In December 2000, a group of transplant professionals (surgeons, physicians, transplant coordinators, social workers) published recommendations related to the care of living donors. You can find their published recommendations here. The article does address life and health insurance coverage under the section on "Psychosocial Suitability". Here is the excerpt:

In addition, the psychosocial evaluation can address a variety of other issues including the ability of the potential donor and family to cope effectively with stresses associated with transplantation (before and after donation)..... [including] the ability of the donor to subsequently obtain life insurance without additional cost.

For example, with regard to obtaining insurance, a survey of health insurance companies conducted by Spital and Kokmen10 found that the majority of health care organizations did not consider healthy kidney donors to be at increased risk for medical problems and would not raise their premiums. To guarantee that a factual basis supports this contention of future insurability, more relevant prospective data are needed that would include live organ donation of the lung, liver, intestine, and pancreas.

Since the Spital and Kokmen report, some of the conference participants have been told by potential donors that their life insurance options would be limited if they became an organ donor. In such cases, it may be necessary for transplant centers to inform the insurance carrier of existing data that report that the patient is not at increased risk of death because of donation. Some organizations are attempting to offer insurance options specific to live organ donors (i.e., life, health, and disability insurance).

Again, it is important for potential donors to carefully consider these issues before proceeding with donation.

Is there any assistance available for lost wages, travel and lodging?

Living donors often lose wages during their recovery period, which can be a big expense. Living donors are typically responsible for any time lost from work, unless their employer is able to provide paid leave or allow the donor to use short-term disability. Some donors use a combination of vacation time, sick leave and/or short term disability during their recovery period. The NKF suggests that you discuss these issues with:

  • Your transplant center (Financial Counselor and/or Transplant Social Worker)
  • Your employer's Human Resources department

Donor Leave Laws

Employees of the Federal Government

Employees of the federal government receive 30 days paid leave for organ donation and 7 days for bone marrow donation. The leave is over and above the employee's sick and annual leave.

Employees of State Governments

Modeled after federal law (for federal employees), many states have begun to offer state employees up to 30 days leave (paid or unpaid) for serving as a living organ donor. This leave is considered separate from any annual or sick leave already accrued by an employee. Usually, the period of leave is 30 days for organ donors or 7 days for bone marrow donors. Click here for detailed state-by-state information.

Private Sector Employees

Eight states (Arkansas, Connecticut, Illinois, Louisiana, Maine, Minnesota, Nebraska and Oregon) allow a leave of absence for private sector employees but in many cases, it only applies to marrow (not organ) donors. Click here for detailed state-by-state information.

Tax Deductions or Credits

There is pending federal legislation that would provide a federal tax credit of up to $5,000 for unreimbursed expenses, including lost wages, for living donors of kidney, liver, lung, pancreas, intestine or bone marrow.

Please help us get this legislation passed! Visit www.kidney.org/takeaction to join the NKF's Take Action Network to advocate for legislation to help living donors, transplant recipients and kidney patients. Be sure to reply to ALL the featured alerts.

Many states have already enacted tax deductions or credits to living donors for unreimbursed expenses associated with donation. Click here for detailed state-by-state information.

Additional Sources of Assistance

The National Living Donor Assistance Center (NLDAC) may be able to pay for up to $6,000 of the living donor's (and his or her companion's) travel and lodging expenses. The transplant center where the recipient is waiting will apply on the living donor's behalf. Visit the NLDAC Web site at www.livingdonorassistance.org for more details and to read about general eligibility requirements and how the program works. Click here for a flyer about the program.

There are some other limited sources of financial assistance that might be available to you. Please click here for a list of possible options. You'll need to check with these organizations to determine if help is available for your particular situation and at what level.

Resources and Additional Information

Donor Leave Laws and Tax Deductions/Credits for Living Donors
National Living Donor Assistance Center (NLDAC) flyer
NKF's Take Action Network

LIVING ORGAN DONOR NETWORK - Insurance options

Living Organ Donor Network

The American Foundation for Donation & Transplantation (AFDT), formally known as Southeastern Organ Procurement Foundation, is an association of transplant related professionals and one of the oldest transplant groups in the country. AFDT operates the Living Organ Donor Network (LODN) which became operational in October 2000. Information regarding living kidney donors is be placed in a common data base. In addition, information on their decision to donate as well as their quality of life post donation are being collected at several time intervals and utilized to further the knowledge base for future living donors.

The Living Organ Donor Network provides a data registry that contain data sent in by living donors via a questionnaire sent to the living donor at several time intervals as long as the donor in interested in participating. This data is also shared with the transplant center to allow for better communication with the team members.

Also, available as an option, donors can be provided with a safety net of protection in the form of life, disability and medical insurance for complications which might arise from being a kidney donor. The life insurance benefit is $500,000.00 for donor and $250,000.00 disability insurance. The insurance is optional for transplant centers that participate in the program as well as for individuals that may wish to benefit from this protection. All information on an individual center's donors is forwarded to the center as received and the hospital has access to their data at all times.

AFDT secured coverage for LODN through AIG Insurance which currently underwrites the coverage for donors in the National Bone Marrow Donor Program upon which LODN is modeled. AFDT offers LODN to all kidney transplant centers in the country and there is no cost to the donor or the recipient to participate in the registry. However, the transplant center has to participate in order for the donors to be enrolled. There is a one time fee of $550 per donor for the optional insurance protection. Living donors may participate as individuals in the registry and purchase the insurance as an individual.

For information on how to participate or find kidney transplant programs that participate contact Arlene Skinner at AFDT by phone at 800-543-6399 or by email at skinner@seopf.org.

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