Transplant and Pulmonary Hypertension

Financing a Lung TransplantHealth Insurance

Lung transplants can be a great financial burden. There are a variety of medical and non-medical costs associated with the transplant process including pre-transplant evaluation and testing, surgery, follow-up care and testing fees, rehabilitation, food, lodging and travel expenses if you must relocate near the transplant center, child care and lost wages if your employer doesn't pay for the time you or family members spend away from work. While your social worker and financial coordinator will help you understand how you can best afford these costs, the following is some helpful information to clarify the process.

The first thing to come to terms with is that lung transplants are very expensive procedures. The United Network for Organ Sharing reports that a double lung transplant, including the organ procurement fee, hospital costs, physician fees and the cost of evaluation, follow-up and immunosuppressant drugs, can come to about $543,900. A heart and lung transplant can cost $655,600 or more. Please note that these are estimates and that each institution establishes its own price for transplant surgery. Moreover, these costs do not include non-medical costs associated with transplant (i.e. transportation, lodging, etc.).

There are several sources of funding that patients typically turn to in order to fund their transplant:

Private Insurance

If you have private insurance through an employer or personal policy, read your policy carefully to understand the terms and benefits regarding transplants. Contact your insurance company if you have any questions, and keep a log of any conversation you have with your insurance representative or the hospital billing office. If you still have questions after speaking with the insurance company, contact your state insurance commissioner.

Though your insurance will cover some of the costs of transplant, you will still be responsible for deductibles, co-pays, or any charges that exceed your insurance "cap" (the maximum amount of money an insurance company will pay in a lifetime, a year, or for a certain procedure). Be sure to pay your insurance premiums on time so that you do not lose your insurance.

Tips for dealing with your insurance company:

  • Make sure that you read and understand your policy.
  • Contact your insurance company, financial coordinator and/or state insurance commissioner if you have any questions.
  • Keep your premium payments up to date and follow the rules of your insurance company to avoid a lapse or loss of insurance.
  • If your transplant center asks you to be involved in any experimental procedures or studies, be sure to ask your insurance company if your policy will cover the payment.
  • Keep copies of all medical bills, insurance forms and payments.
  • Ask your insurance company about pre-certification or using a specific provider.
  • Make sure to keep your transplant center informed about your insurance, particularly if you have more than one insurance company.
  • Always keep a log of your conversations with your insurance company or anyone in the hospital's billing office.

Medicare

Medicare does not always pay all of your medical expenses; payment is based according to a set fee, which may be less than the actual cost of the transplant. Therefore, patients covered by Medicare will be required to pay deductibles, co-pays and various other expenses. A private insurance policy, called a supplemental or "Medigap" policy can help cover some of the expenses that Medicare does not cover.

To receive full Medicare benefits for a transplant, your transplant center must be a Medicare-approved facility that meets certain standards. If you have questions about the type of Medicare coverage that you have or how Medicare can help pay transplant expenses, you can call the Medicare hotline at 1-800-633-4227 or visit Medicare online.

  • Medicare Part A covers certain lung and heart/lung transplants in Medicare-approved facilities, as well as inpatient hospital care and some home healthcare.
  • Medicare Part B covers doctors' services, outpatient hospital care and anti-rejection drugs.
  • Medicare Part D can help pay for prescription drugs not covered by Part A or B.

A full list of what is covered by each Medicare plan is available on the Medicare website.

Prescription Drug Assistance Programs

Many drug companies provide medications for patients who are financially needy. A full directory is available on the Pharmaceutical Research and Manufacturers of America (PhRMA) website.

The Veterans Administration

You may be eligible for VA benefits if you have been honorably discharged from the military. If you first became ill while in the service or are indigent, you may be eligible to receive a transplant at a VA medical center. To find out if you qualify contact your local veterans hospital or VA office.

Additionally, TRICARE is a regionally managed program for active duty and retired members of the uniformed services, their families and survivors. In order to receive benefits, you must be pre-authorized by your regional TRICARE. To do so, your transplant physician must submit a summary to the TRICARE office. TRICARE may help cover lung and heart/lung transplants. For more information call 303-676-3526 or visit TRICARE's website.

Advocacy Groups & Charitable Organizations

Some advocacy groups and charitable organizations provide limited financial assistance to transplant patients through grants and direct funding. These groups provide other aid as well, including information, patient support and help in dealing with insurance companies. A list of organizations that may be able to provide some financial assistance to transplant patients and their families is available online.

Fundraising Campaigns

Some transplant patients carry out fundraising campaigns as a source of financing. Use caution if you do this; if you are on Medicaid, for example, donated money may be counted as income and disqualify you for Medicaid coverage. You should establish a trust fund or special account to put donated money into. Check all legal requirements in advance by contacting city and county governments and consulting with a legal adviser. Once you are ready to seek donations, consider contacting local newspapers and radio or television stations. Enlist the support of local merchants and other sponsors to promote or contribute to your events. For inspiration, check out what other PHers are doing to raise funds for PHA along with awareness.


Language Based on Treatment Fact Sheet Issued by PHA's Scientific Leadership Council

To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed in 2009

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.