Covering transplant costs
Learn more about qualifying for Social Security benefits after an organ transplant.
Note: This information is only a brief summary and is not intended to provide complete information. Ask your transplant financial team and your insurance provider or employee benefits officer for the latest information or help.
You or your family may have health insurance coverage through an employer or a personal policy. Although many insurance companies offer optional coverage for transplant costs, the terms and benefits of insurance vary widely. Read your policy carefully and contact your insurance company if you have questions about how much of your costs they will pay, including your lab tests, medications and follow-up care after you leave the hospital.
Some insurance questions to consider:
- Is my transplant center in-network with my insurance company?
- If my transplant center is out-of network, do I have an out-of-network benefit for transplant?
- What deductibles will apply?
- What are my co-payments for doctor visits, hospitalizations and medications?
- Does my plan require prior authorization?
- Who needs to get prior authorization?
- Does my plan have a lifetime maximum or “cap” for transplant services?
- Do any pre-existing-condition requirements
Regardless of how much your insurance covers, you are responsible for any costs not paid by your insurance, unless you have made other arrangements. If you are responsible for paying any or all of your insurance premiums, be sure to pay them on time so that you do not lose your insurance.
Transplant center social workers and financial coordinators can also help you with the information you need. They can contact your insurance company to check on your benefits and explain your coverage in more detail.
Many insurance policies state a total amount of money that will pay out in your lifetime, also referred to as a “cap.” After the insurance company pays this amount, they are not required to pay additional benefits. Some policies also put a cap on how much they will pay for a particular procedure or treatment, such as a transplant or the total amount of drugs per year. Even after the actual transplant, the ongoing cost of care may exceed the cap. Because the amount of the cap varies greatly depending on the individual policy, it is important to be familiar with the terms of your insurance cap and keep track of how your insurance dollars are spent.
Experimental and investigative procedures
If your transplant center asks you to be involved in any experimental procedures or studies, be sure to ask your center or insurance company if your insurance policy will cover the payment. It is important to know that you do not have to agree to be involved in any experimental procedures or investigational studies. If you still have questions, contact your employer’s benefits office or your state insurance commissioner.
- Keep copies of all medical bills, insurance forms and payments (or canceled checks).
- Ask your insurance company about pre-certification or using a specific provider.
- Follow the rules set forth by your insurance company so that your benefits will not be decreased.
- Always keep a log (who you talked to, date and time and questions answered) of your conversations with anyone in the hospital’s billing office or your insurance company.
- Make sure to keep your transplant center informed about your insurance, especially if you have more than one insurance company.
- For more helpful tips, see the Financial Q&A.
COBRA extended employer group coverage
If you are insured by an employer group health plan and you must leave your job or reduce your work hours, you may qualify for extended coverage through COBRA (Consolidated Omnibus Budget Reconciliation Act of 1985). This federal law requires certain group health plans to extend coverage for 18 to 36 months after benefits end. This requirement is limited to companies employing 20 or more people. You pay the full cost of the premiums for the group health plan. Learn more by contacting your employer’s benefits office or visit the federal Department of Labor Web site >
Health insurance marketplace
Also known as the health insurance “exchange,” the marketplace is a set of government-regulated and standardized health care plans in the United States. Open enrollment starts October 1, 2013. Coverage starts as soon as January 1, 2014. Learn more at www.healthcare.gov >
Medicare is a federal health insurance program available to people who are 65 or older, disabled or have end stage renal disease (ESRD).
Medicare, like most private insurance plans, does not always pay 100% of your medical expenses. In most cases, it pays hospitals and health providers according to a fixed fee schedule, which may be less than the
actual cost. You must pay deductibles and other expenses. Medicare currently offers coverage for
- pancreas, either after a kidney transplant or for certain indications
If you already have Medicare due to age or disability, Medicare also covers other transplants:
- heart, in certain circumstances
- liver, including transplants necessitated by hepatocellular carcinoma (HCC)
To receive full Medicare benefits for a transplant, you must go to a Medicare-approved transplant program. These programs meet Medicare criteria for the number of transplants they perform and the quality of patient outcomes.
Medicare prescription drug plans
Medicare Part D covers costs for prescription drugs. To get this coverage you must choose and join a Medicare drug plan. For more information call (800) MEDICARE ( 633-4227)/ TTY (877) 486-2048 or visit www.medicare.gov (click on Medicare Basics > Part D).
Many people on Medicare also choose to buy a private “Medigap” policy to pay for costs not
covered by Medicare. Check with a local insurance agent or go to www.medicare.gov (click on
Resource locator > Medigap).
State Health Insurance Assistance Program
The State Health Insurance Assistance Program (SHIP) is a national program that offers one-on-one
counseling and assistance to people with Medicare and their families. Your transplant social worker or financial coordinator can provide information on your state’s SHIP program, or learn more now >
Many states offer a high-risk health insurance pool to provide access to coverage to individuals
with serious pre-existing medical conditions. Typically the premiums are higher, and the coverage may be more limited. Ask your transplant center social worker or financial coordinator if your state has a high-risk insurance pool or learn more now >
Medicaid is a federal and state government health insurance program for certain low-income
individuals. Each state determines criteria for:
- reimbursement rates
Most Medicaid programs only cover transplants performed in their state, unless there are no
centers that can transplant that organ. For more information, contact your local human services
department or the financial coordinator at your transplant center.
Charitable organizations offer a range of support, from providing information about diseases, organs and transplants, to encouraging research into these diseases and treatments.
Also, although it is very unlikely that one organization can cover all of the costs for an individual patient, some organizations provide limited financial assistance through grants and direct funding. For example, an organization may only be able to help with direct transplant costs, food and lodging or medication costs.
Advocacy organizations advise transplant patients on financial matters. If you agree to a financial arrangement with an advocacy organization, it is important to make sure that the funds are available in a manner that suits your needs. You may even want legal assistance in reviewing a written agreement before signing. Your bank can also help you review the arrangement.
Every advocacy organization should be able to provide supporting information and background documentation to prove they are legally recognized to help those in need. Brochures and other background information should never serve as substitutes for these documents. Ask advocacy organizations to provide you with copies of the following documents:
- a current federal or state certification as a charitable, non-profit organization
- a current by-laws, constitution and/or articles of incorporation
- a financial statement for the preceding year, preferably one that
- an audit report from an independent organization
Public fundraising is often used to help cover transplant expenses not paid by medical insurance. Before you begin seeking donations, it may be necessary to check with your city/county governments, legal advisor or transplant team about the many legal and financial laws and guidelines.
If you decide to use public fundraising as a way to cover your expenses, you may want to contact local newspapers, radio or television stations to help support your cause. In addition, try to enlist the support of local merchants and other sponsors to promote or contribute to your events. Your friends, neighbors, religious groups, local chapters of volunteer or service groups and other community groups may also be able to help.
It is also very important to understand that the funds you raise only be used for your transplant-related expenses and donated money sometimes has to be counted as taxable income. In cases in which money must be counted as income, you may lose your Medicaid eligibility.
TRICARE and Veterans Administration
Government funding for families of active-duty, retired, or deceased military personnel may be available through TRICARE. TRICARE standard may share the cost of most organ transplants and combinations. TRICARE also covers living donor kidney, liver, and lung transplants. Patients must receive pre-authorization from the TRICARE medical director and meet TRICARE selection criteria. Pre-authorization is based on a narrative summary submitted by the attending transplant physician. For more information about TRICARE, contact the health benefits advisor at your nearest military health care facility, call the TRICARE Benefits Service Branch at (303) 676-3526 or learn more now >