Financing a Transplant
Section 2: Insurance
Private or Personal Insurance
Who is a financial coordinator?
The financial coordinator will be the point person who will be running your insurance and checking your eligibility. In general, you will need pre-approval for evaluation for transplant, and then once the transplant team approves you for transplant, the insurance company will need to approve you for the actual transplant.
Health Maintenance Organizations (HMOs)
Many insurance companies are part of a larger network of hospitals and doctors. Insurance companies often contract with transplant networks to manage their transplant cases. Some insurance networks will not approve transplants at a particular center and will require the patient to use a transplant center within their network, even if the preferred center is in another state.
Financial Questions to Ask Your Insurance Company and Financial Coordinator
What financial assistance does the transplant center offer, if any?
How much of the transplant cost is covered by my insurance? (e.g. exactly how much will I have to pay out of pocket)
What happens if my financial coverage runs out?
If you have met your deductible, you will pay the 20% coinsurance on the bill which is 20% of $200, or $40 in this case.
If you have not met your deductible, you will pay the full $200 because it is lower than the $500 deductible.
If your policy has a $500 deductible and 20% coinsurance, the consumer is responsible for 20% of costs above $500.
What if your costs are $500,000 for the policy term? You would be responsible for almost $100,000!
Most consumers cannot afford this, so an out-of-pocket maximum is applied. This provision caps the consumer’s costs at a certain amount, say $7,000.
In this example, the consumer is responsible for the deductible ($500) and the coinsurance (20%) of all other costs up to a maximum of $7,000.
Once the out-of-pocket maximum is reached, the insurance company is responsible for 100% of all costs covered under the policy.
Insurance Coverage Changes to Consider
Reaching the maximum limit the insurance company will pay per year or per lifetime.
Divorce or separation from a spouse can lead to cancellation of coverage on the spouse’s policy.
Changes that may impact the insurance coverage; change in job status due to health, lay-off, change in student status, or other causes.
Changes in the patient’s insurance policy that can lead to increased co-pays and/or deductibles.
Children can stay on a parent’s health insurance plan until 26 years old, and after that they usually are required to find their own health insurance coverage.
Some employers will grant extended coverage past 26 years in extenuating circumstances. Check with your employer for policy details and possible exceptions if your child is in this situation.
Section 1: The Basics
Medical Costs of Transplant
- Pre-transplant evaluation and testing.
- Transplant hospital stay and transplant surgery.
- Post-transplant follow-up care and testing (usually transplant insurance covers up to one-year post-transplant, but each insurance policy is unique, so you should check with your policy to be sure of the exact guidelines).
- Anti-rejection and other medications (can cost upwards of $10,000 per year without utilizing insurance, assistance, or reimbursement programs).
- Fees for surgeons, physicians, radiologists, anesthesiologists.
- Fees for the surgical recovery (procurement) of the organ.
- Insurance deductibles or co-payments.
Non-Medical Costs of Transplant
- Transportation to and from the transplant center, before and after your transplant.
- Food and lodging before, during, and after your transplant (depending upon how close you are to your center will determine whether or not you will need to live near your transplant center prior to your transplant while you are waiting for the call. Typically centers require you to be within a 2-3 hour radius.).
- Parking fees at the transplant center, particularly if the transplant center is located in a large city.
- Possible child-care costs.
- Lost wages, if you or your caregiver have to leave work or quit a job in order to pursue transplant and FMLA or disability is not an option.
How can I afford lodging near my transplant center?
What are the most common sources of funding for transplant?
In general, the most common funding sources are:
- Medicare and Medicaid
- Charitable and advocacy organizations
- Other sources of insurance
Other financial resources and programs of interest include:
- Social Security Disability
Public fundraising is often used to help cover transplant expenses not paid by medical insurance. If you decide to use public fundraising as a way to cover your expenses, you may want to contact local newspapers or radio and television stations to help support your cause.
There are many online sites that can help with fundraising such as GoFundMe and Fundly. Also, organizations like COTA help transplant patients run fundraisers to generate funds to support them through the transplant process.
It is important to understand that any money you do raise can only be used for transplant-related expenses. Consider enlisting the help of your friends, family, community, local organizations, merchants, and religious groups to help you with your fundraising efforts.
Charitable and Advocacy Organizations
If you would like a listing of these organizations and links to their websites, please visit this page.
Tips for Budgeting and Managing Your Finances
Requiring frequent medical services places a strain on a family’s finances. These suggestions are designed to help you prioritize your spending as you navigate the transplant process.
1. Budget your monthly finances:
- Before the 1st of the month begins, put your predicted/average income at the top of a document/paper.
- After you have calculated your projected monthly income, write down all of the major expenses: rent or mortgage payment, utilities, transportation, and food costs.
- Subtract these projected costs from your income total.
- What you have remaining of your income can now be designated toward other costs, including bills/payments, clothing, entertainment, etc.
- Once you have everything accounted for in your budget, make sure that you are not spending more than your projected monthly income.
- It’s important that you budget every month from the predicted income coming into your household.
- If you find yourself “in the red,” meaning you have more expenses than income, you will need to
- A) cut expenses down and/or
- B) leave bills/payments unpaid or negotiate payments.
It is best if you have a little money left over from your income to put towards extra payments on your debt or into your savings, instead of having all of your income spent on expenses at the end of the month.
2. Have an emergency fund:
- Consider saving 3-6 months of basic expenses (e.g., rent/mortgage, transportation, food, utilities) in a savings account.
- This is better than using a credit card in an emergency- as credit cards will eventually need to be paid back.
- If you are budgeting each month, you should be able to put money aside to put toward an emergency fund.
- Do not use this emergency fund for non-emergencies, as that is not the purpose.
- The emergency fund is to be utilized for periods of unexpected job loss, income loss, or increased and unforeseen medical expenses.
- It’s important to have a large emergency fund when someone is facing a chronic illness. This is because you never know when you’re going to need to take off of work, travel, or even leave a job.
- Do not save your emergency fund in an investment or 401k- make sure the emergency fund is in a place you can access it easily and is not at risk of being lost in a stock market downturn.
3. Plan for large expenses:
- A sinking fund is where you can save money for an expense that is recurring or is predicted.
- This is separate from an emergency fund, as an emergency fund is for unpredicted emergencies.
- If you are aware that you will be needing to take time off of work in 3 months, create a sinking fund to get you through that period.
- Estimate the money you will need, and save for it every month leading up to that event or expense.
- A way you can plan for large upcoming expenses is to create a sinking fund in your budget.
- Planning ahead is extremely important so you know your family and you will be secure, even when large expenses hit.
4. Refrain from taking on debt:
- It can be very tempting to take out debt when facing a medical crisis, however, this can be very financially destructive in the long-term.
- Borrowing from your own investments can mean penalties and taxes.
- Try to preserve your future investments and retirement as best you can.
- With credit cards, it’s advised to pay them off every month so that the interest payments don’t create more debt for you to pay.
- Try to think long-term and be proactive in creating a financially secure future.
Be diligent about keeping track of bills and negotiating payments when you can. Here in the U.S., It’s advised to have health insurance so you can better afford your medical expenses, as without insurance it is challenging for anyone to afford the extreme costs of medical care.
Requiring frequent medical services places a strain on a family’s finances, and a transplant is no exception. Even with insurance, an intestinal or multivisceral transplant can be very expensive. According to the 2020 Milliman US organ and tissue transplant report, it is estimated that an intestinal transplant will cost over $1.2 million in 2020. As a transplant patient or caregiver, it is important that you understand both your medical costs and non-medical costs. This will help you to properly assess what you will need to cover in your own budget versus what insurance or financial assistance may help you cover.
Section 3: Government Programs
Medicare is an insurance program funded by the federal government and is available to those who are citizens or permanent residents of the United States and meet one of the following:
- >65 years old OR
- Are disabled (Medicare usually begins two years after disability) OR
- Have permanent kidney failure requiring dialysis or kidney transplant (end-stage renal disease, ESRD).
Medicare has two components, Part A and Part B
Medicare Part A Hospital Insurance- Offered free to those who qualify:
- Inpatient hospital services.
- Skilled nursing.
- Some home health services.
- Kidney, kidney-pancreas, and pancreas-after-kidney transplants.
- Certain heart, lung, liver, heart-lung, pancreas, and intestinal transplant, if you already have Medicare due to age or disability.
- Hospice care.
Medicare Part B Medical Insurance- Pay a Premium:
- Physician services.
- Outpatient hospital services.
- Medical equipment and supplies.
- Some other medical services part A doesn’t cover.
- Part of the cost of anti0rejection medications for the life of your transplanted organ, if your transplant was covered by Medicare and you are older than 65 or you are disabled according to Medicare for reasons other than ESRD.
Medicare Part D- Prescription Drug Coverage
Medicare prescription drug coverage is an optional benefit offered to everyone who has Medicare. If you decide not to get Medicare drug coverage when you're first eligible, you will pay a late enrollment penalty of 1% of the premium payment for each month you do not enroll. For example, if you are eligible and wait a year, you will pay a premium that is 12% higher than if you enroll at the time of eligibility.
To get Medicare drug coverage, you must join a Medicare plan that offers prescription drug coverage. Each plan can vary in cost and drugs covered.
To find a Medicare drug plan that will work for you, please visit this site.
In general, the plans have monthly premiums and co-pay amounts that you will have to pay. Once your prescription costs reach a certain amount, there will be a period of time known as the ‘donut hole’ where you will need to pay 100% of your prescriptions covered by Medicare Part D.
Once you reach your out-of-pocket maximum, you will have ‘catastrophic coverage’ where medications will be covered at 95%. The premium co-pay and out-of-pocket amounts change each year. You will need to be prepared to cover out-of-pocket expenses under Medicare Part D. It is recommended that you apply for extra help to avoid the ‘donut hole.’
Visit this site to apply for the extra help program.
In terms of transplant medications and coverage, here is a table to explain medication coverage:
“Medigap” Supplemental Policy or Secondary Insurance
You may choose to buy a private insurance policy to cover the portion of medical expenses that Medicare does not cover, since Medicare alone is not sufficient to cover 100% of transplant costs.
Medicaid is a state medical assistance program that covers most costs for hospital stays, clinic visits, and medication. There are some procedures or exams not covered by Medicaid, and some must be pre-approved. Some Medicaid programs are based on family income, and others are based on medical needs.
Medicaid is a state funded program and is based on need. There are two categories of need determined individually by each state:
- Categorically needy: if you fall below the income and resource level designated as the “poverty line” by your State.
- Medically needy (spend down): The “spend down” is the process of deducting medical costs from your income until your income level and you become eligible for Medicaid (not in all States).
Some individuals are exempt from the income-based rules, including those whose eligibility are based on blindness or disability, but eligibility requirements vary based on state. Visit your state’s Medicaid website for individual eligibility requirements or contact your financial coordinator at your transplant center for more information.
TRICARE is the federal government’s health insurance program for the branches of uniformed service. Patients must receive pre-authorization for transplant just like other forms of insurance. Contact your nearest branch for more information regarding your benefits and eligibility.
Social Security Disability (SSI or SSDI)
If your medical condition prevents you from working, you may qualify for disability benefits.
Social Security provides benefits to people who are disabled. Under this program:
- You must be unable to perform any work for which you are qualified.
- Your disability must be expected to last at least a year or result in death.
- You must have earned enough work credits when you were able to work (SSDI only).
- You must file a formal application.
- If you are turned down the first time but believe you qualify, you may file an appeal.
If you qualify,
- You may receive benefits until you are able to work again on a regular basis.
- Certain members of your family may also qualify for benefits.
- A number of incentives are available to help you return to work.
Social Security Administration disability programs
Social Security Disability Insurance (SSDI): SSDI is for individuals who are working and paying Social Security taxes. You must wait 5 months after disability begins to receive SSDI benefits. You may begin receiving these benefits while you are involved in an approved rehabilitation program.
Supplemental Security Income (SSI): SSI makes monthly payments to disabled individuals with few assets and low incomes. No waiting period is required before receiving SSI benefits.
Apply for disability as soon as you become disabled as the claims process can take 3-5 months to complete.
Review of your application: The Social Security office will check your application to see if you meet initial requirements for disability. They will then send your application to your State’s Disability Determination Service for a formal evaluation. Reviewers will gather information from your doctors about your medical condition, history and treatment, as well as your ability to perform normal work activities. You will receive written notice about your claim.
Even if another insurer or government agency has ruled that you are disabled, you must still meet Social Security requirements in order to receive Social Security benefits.
Review periods and termination of benefits: Your case will be reviewed periodically to see if you are still disabled. Your benefits will end if:
- You work on a regular basis and earn a certain amount of money per month after deducting disability-related work expenses.
- Your medical condition improves and you are no longer considered disabled (unless you are in a vocational rehabilitation program, like ticket to work, to learn more visit this site).
Family Medical Leave Act (FMLA)
A family member may be able to take time off from work under the Family Medical Leave Act, and you and your family may be able to use Family Medical Leave Act benefits to protect your job while you are recovering. The Family Medical Leave Act (FMLA) of 1993 allows eligible employees to take up to 12 weeks of unpaid, job-protected leave for certain family and medical reasons. Not all companies are required by law to offer these benefits.
To be eligible for FMLA, an employee must:
- Work for a covered employer,
- Have worked for a total of 12 months, and
- Have worked at least 1,250 hours during the last 12 months.
FMLA benefits can be used to:
- Care for a spouse, child or parent with a serious health condition,
- Take medical leave when the employee can’t work due to a serious health condition, or
- Take blocks of time or work fewer hours daily or weekly.
Under the FMLA, the employer must:
- Inform employees of their rights and responsibilities under the FMLA,
- Continue insurance coverage while employees are on leave, and
- In most cases, return the employee to the same job or a job with equal pay and benefits.
- May have to pay insurance premiums while on leave or
- May have to pay insurance premiums for the time off if they did not return to work after the FMLA time off.
You can get additional information about the Family Medical Leave Act by visiting this site.
Section 4: Additional Resources
Family Member Story: Fundraising
Read Cassidy's story on her fundraising efforts for her sister, Molly.
Helpful Link: Centers for Medicare and Medicaid (CMS) Intestinal Transplant Policy
Centers for Medicare and Medicaid (CMS): Government webpage explaining national coverage policy for intestinal and multivisceral transplantation.
Helpful Websites: Financial Resources
Financial Resource Organizations and Websites: This page has a listing of organizations that help with fundraising and other forms of financial assistance for individuals going through a variety of medical situations.
Helpful Websites: Medication Assistance
Medication Assistance: Visit this section for a listing of websites that can help with prescription medication costs.