Introduction by Bob Aronson
Information provided by Transplant Living
The National Marrow Donor Program
Because there is a shortage of organs the odds of getting a transplant are not good, There are a lot of factors that influence whether any one person will get an available organ and one of them is the ability to pay. Unfortunately our system is heavily weighted toward those who either have insurance or an independent ability to finance the surgery and the aftercare. A transplant and the aftercare and medication for the first year after the surgery can cost as much as a million dollars. Sometimes even those with the ability to pay need some assistance.
Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.
UNOS is the private government contractor that facilities all organ transplants in the United States. The information in his blog is copies from their website which provides a wealth of information about the entire donation/transplantation process. It is one of the most comprehensive resources available. Bob’s Newheart thanks them for compiling this information and for its willingness to share it with you via our blog.
Most transplant programs have social workers and financial coordinators who can help you with the financial details of your transplant. Depending on the structure at your center, one or both will help you develop a strategy.
Common funding sources to help with the costs of transplants include:
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?
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.
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.
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 >
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 transplant of:
- 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.
If you have questions about Medicare eligibility, benefits, or transplant programs, contact your local Social Security office, or Medicare at 800-633-4227 or www.medicare.gov.
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).
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 >
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.
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 >
The National Marrow Donor Program is also a resource for information on where to get financial assistance. They offer this advice.
You or someone you know might need an organ/tissue transplant you must show an ability to pay before you will be accepted by most transplant centers. Most people rely on insurance but insurance policies differ from one company to the next. Be sure about what your policy covers, talk to your plans benefits manager or to the hospital social worker to get a clear idea of what is covered.
It is very likely that the following items are NOT COVERED by your health insurance company. This information was generated by the National Marrow Donor Program. http://tinyurl.com/b8pb4s4
You may want to ask if the following items are covered by your specific health insurance plan:
- Testing to find a matched unrelated or related donor
- Donor costs
- Transplants for a rare diagnosis
- Travel and lodging expenses to and from the transplant center for patient and/or caregiver
- Food costs while staying near transplant center
- Parking costs
- Prescriptions for post-transplant discharge or outpatient medications
- Office visits coverage
- Home health care
- Psychiatric coverage
- IV injections
- Clinical trials
- Sperm/egg storage
- Insurance premiums when patient is not employed
- Fees for post-transplant home preparation (carpet and drapery cleaning, replacing filters on heaters, air conditioning cleaning)
- Change in cost of living after transplant (different food needs, for example)
- Child-care costs
If your insurance does not cover all of your costs related to transplant, you may be eligible for Financial Assistance for Transplant Patients.
Financial assistance for transplant patients
Financial assistance resources may be available to you, if your insurance does not cover all of the costs related to your bone marrow or cord blood transplant. Your transplant center social worker will help you find financial aid that is available through Be The Match® and other organizations.
If insurance does not cover all of the costs related to your bone marrow or cord blood transplant, financial assistance resources may be available to you.
Applying for financial aid programs may include many steps. Your transplant center social worker will help you find financial aid that is available through Be The Match® and other organizations, and help you complete the applications.
Be The Match financial aid programs
Be The Match financial assistance is available for patients who are searching for a donor on the Be The Match Registry®, or who have had a bone marrow or cord blood transplant with a donor from the registry. Financial assistance from these programs can help you pay for the cost of a donor search and for some post-transplant expenses. Talk with your transplant center financial coordinator to see if you are eligible for these programs.
*Funds for financial aid programs are available through the generous contributions to Be The Match.
Transplant costs worksheet can help you calculate the transplant costs not covered by insurance.
Search Assistance Funds
Search Assistance Funds can help pay the costs not covered by insurance for searching Be The Match Registry of unrelated adult donors and cord blood units. If you are eligible, Be The Match will notify the transplant center. This allows your donor search process to begin as quickly as possible.
To be eligible:
- You are searching for an unrelated donor or cord blood unit from the Be The Match Registry.
- Your transplant center has determined you do not have enough insurance coverage to cover the donor search costs.
- You must be a U.S. resident.
Transplant Support Assistance Funds
Transplant Support Assistance Funds help pay for some costs during the first 12 months after transplant that are not covered by your insurance. These funds can be helpful with costs related to:
- Temporary housing, if you and your family or caregiver need to relocate for the transplant.
- Food for you and your family or caregiver.
- Parking and gas for ground transportation.
- Co-pays for prescriptions and clinic visits.
To be eligible:
- You have had a transplant using an unrelated donor or cord blood unit from the Be The Match Registry.
- You must be within the first 12 months of your transplant.
- You meet financial eligibility criteria.
- You must be a U.S. resident.
ExploreBMT is a resource to connect you and your family with financial support and information from organizations you can trust.
Other financial aid programs
There are several more financial aid programs available to help you with your transplant costs. Ask your transplant center social worker to help you identify and apply for programs that you may be eligible for, including Be The Match financial aid programs.
Even if you have coverage for transplant, fundraising is a good path to take to assist with costs not covered by insurance, such as prescriptions and temporary housing. It is also a great way for your family and friends to be involved with your care.
Asking for help is perfectly okay, and you may find that many of your loved ones will step forward to support your fundraising campaign. If you do decide to raise funds, it is best to do it before your transplant, as the money raised will help you budget for your medical expenses.
These organizations can help you plan your fundraising campaign:
Help HOPE Live (Formerly the National Transplant Assistance Fund (NTAF)
Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients. He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy.
Bob is a former journalist, Governor’s Communication Director and international communications consultant.