Having clear answers to your questions is often the first and most important step when your child is facing a heart transplant. We have compiled answers to the questions we hear most often about transplant. To read our Q&A, simply click on each of the questions below.
There are over 250 transplant centers in the United States. Each center is fully accredited by the United Network for Organ Sharing (UNOS).
Many factors should be considered including:
Access: Travel time and cost of commuting to the transplant center
Cost: Insurance coverage for the transplant center
Support System: Availablity of family and friends for help and support
The Program: The medical and surgical team experience and the program’s experience with organ transplant.
UNOS is the United Network for Organ Sharing. UNOS oversees all organ transplants in the United States. UNOS manages the national transplant waiting list and has set forth guidelines and policies that ensures fairness for all patients waiting for organs, sets professional standards for quality patient care, provides accreditation to transplant programs and educates the public on the importance of organ donation.
Organ Procurement Organization are responsible for the recovery, preservation and transportation of the organs for transplant. As a community resource organ procurement organizations educate the public about the critical need for organ donation. Our local Organ Procurement Organization is Lifeline of Ohio (LOOP).
Yes. This is called “multiple listing” and this allows patients to be considered for organs that become available in other areas of the country. If you choose to be listed at another center you must be first evaluated by that particular center and then listed.
The overall cost of transplant can be very expensive. This cost can include evaluation and testing, ICU care, the transplant surgery and follow up care. In addition there may be loss of wages if you miss work. Very few patients can pay for all of the cost of transplant. Many of the costs are covered by insurance. Your transplant team here at Nationwide Children's Hospital will help guide you to obtain adequate coverage and a financial strategy to cover other expenses.
Patients added to the UNOS waitlist may wait days or years. The factors that affect wait time includes patient listing status, how ill the recipient is, and the availability of persons who donate organs.
Listing status determines if patients will wait for transplant in the hospital or at home. Typically, patients listed as Status 1A or 1B will wait for transplant in the Intensive Care Unit (ICU) or on the regular nursing floor of the hospital. If you live outside of Franklin County, up to four family members can stay at the Ronald McDonald House while a patient is in the hospital waiting for transplant. Patients listed as Status 2 may have the option of being at home while waiting for transplant.
Individual plans, benefits and coverage limits can vary a great deal from patient to patient. It is important to do your own research and find out of your policy covers transplant and if you will be responsible for any costs. Most insurance plans will cover some portion of the costs. You may want to ask your insurance provider some of the following questions:
Is transplant a covered benefit?
Is a heart transplant covered by my health plan?
Is there is a life-time maximum amount of money my plan will allow for transplant? What is it?
How are prescription medications covered?
Does the insurance plan cover medicine directly or is medication subcontracted to a "Pharmacy Benefits Manager"?
Is the cost of medications included in the lifetime maximum amount of coverage
Can you go to any transplant program or does your insurance limit you to only specific, designated hospitals?
Will your policy cover the transplant at Nationwide Children's Hospital?
Do you have an insurance case manager?
What is his/her name and number?
Supplemental Security Income or SSI pays monthly benefits to people who are disabled, blind, or age 65 or older with limited income and resources. The Social Security Administration manages this program. Blind or disabled children, as well as adults, can get SSI benefits. If a family is over the income limits to receive cash benefits, patients may still be eligible for Medicaid for the Disabled. Medicaid for the Disabled can be used as a primary insurance or as a secondary insurance to cover co-pays and other costs.