Finances

Learning that your child needs a lung transplant is very difficult. Your first thought is to do everything you can to help your child. Your next concern may be meeting the cost of the medical care. The cost of a lung transplant can range from $150,000 to $200,000. In addition to the direct costs of the transplant operation and other secondary procedures, there will be a number of other expenses prior to or following the operation:

• Transportation to and from the transplant center for patients and family members, not only for the operation, but for patient evaluation and checkups. Routine checkups can be as often as twice a week.
• Lodging and food for family members while the patient is hospitalized.
• Lost time costs if your employer does not pay for time you are away from work.
• Childcare for the patient’s siblings.
• Medications, including the anti-rejection medications, which are required for the rest of the recipient’s life, can easily cost more than $10,000 during the first year after a transplant.

Some transplant families find that even with good financial resources, they may have difficulty covering all of the costs related to the transplant. As you go through the transplant evaluation and surgery, you will have questions about insurance and financial coverage. This section explores your options for covering all of your transplant costs.

Insurance
You may have health insurance coverage, such as BlueCross/BlueShield or an HMO, through an employer or personal policy. Many insurance companies offer at least optional coverage for transplant costs. However, the terms and extent of insurance coverage can vary widely. Many insurers negotiate contracts with hospitals to provide services at a lower cost or a higher level of reimbursement. Some insurers also designate certain transplant programs as Centers of Excellence, recommending but not requiring you to have the transplant performed at one of these hospitals. Read your policy carefully and contact the insurance company with any questions. Be sure to pay your premiums so the policy will not lapse.

Many insurance policies have a lifetime maximum payout limit or cap. Once a patient reaches this amount the insurance company does not pay any additional benefits. It is important to be familiar with the amount and terms of your insurance cap. You will also need to determine whether your insurance will pay for medication following transplant, as well as for organ recovery charges associated with the operation. Often insurance companies will pay 80 percent, and you must cover the remaining 20 percent.

You will be asked to provide your insurance information during the transplant evaluation. The lung transplant financial coordinator will verify your coverage and its terms. Authorization from your insurance carrier will be obtained. Remember, even with good insurance coverage, it is beneficial to have funds available for the other expenses associated with transplantation.

Financial Assistance
There are both federal and state programs available to assist with the financial burden associated with transplantation. Programs available in Maryland such as the Crippled Children’s Services or the Children’s Special Health Services should be available in other states. Because the programs vary from state to state, families are encouraged to contact their local health department or the transplant social worker early in the evaluation process.

Maryland Medicaid/Medical Assistance (MA)
Some families with insurance may also qualify for Medicaid/Medical Assistance (MA), a state-funded program which helps pay for healthcare. Your income and assets as well as medical expenses determine eligibility for MA. Once you are approved, MA becomes your secondary insurer; often covering the 20 percent of the medical expenses that are not covered by your insurance company. To apply for Maryland MA, call your local Department of Social Services, or speak to the transplant social worker.

During the transplant evaluation, you will be asked to present your Medical Assistance card. Preauthorization will be requested from Maryland Medicaid to ensure that Medicaid is aware of a potential transplant. If your MA coverage becomes inactive during the waiting period between evaluation and transplantation notify the financial coordinator in the business office immediately. The preauthorization is only good when MA is active. Even with Maryland Medical Assistance, you will need available funds for other expenses such as food, transportation and lodging.

Out-of-State Medicaid
If you have Medicaid from a state other than Maryland, the transplant financial coordinator will explore your coverage at the time of evaluation. They will submit a form to provider relations at your state capital requesting that Johns Hopkins become a provider of service. Once approval is received, the hospital must negotiate with the state to reach an agreement on the amount of payment. It is sometimes necessary for the state medical director to review the medical information and agree that the transplant is needed. It is important to realize that some states, such as Pennsylvania, have adequate transplant hospitals, and therefore will not agree to pay Johns Hopkins Children’s Center for your transplant.

Maryland Pharmacy Assistance
This state program provides payment of prescriptions for people not eligible for Medical Assistance. It is based on income only and does not cover every medication. You can apply for this program at your local Department of Social Services.

Supplemental Security Income (SSI)
The federal Supplemental Security Income (SSI) program sends money every month to lower-income children with a chronic illness or disability in addition to automatically qualifying your child to receive health care coverage through Medicaid. To apply for this benefit, call your local Social Security Administration office or call Social Security toll-free at (800) 772-1213. The line is often busy, so call early in the day. If your child is eligible, benefits will be paid back only to the application date, so don’t wait to call. Ask the social worker for an informational packet on SSI.

Children's Medical Services (CMS)
CMS is a program of the Maryland State Department of Health and Mental Hygiene for children up to 21 years of age who have a chronic or disabling condition. It helps provide medical coverage to families who do not qualify for Medical Assistance. Eligibility is based on both medical and financial criteria. CMS will often provide partial coverage for specific needs, such as medications, equipment, and vitamins that are not otherwise covered by insurance. See your social worker for an application and informational packet.

Rare and Expensive Case Management Program (REM)
Patients who currently have an active Maryland Medical Assistance (MA) card, and whose diagnosis is listed in the Rare and Expensive Disease List may qualify to participate in this state program. Lung transplants are not covered at this time. However, if a pre-existing condition such as cystic fibrosis or a congenital anomaly leads to lung transplant, the transplant will be covered. Please speak to your case manager or the transplant social worker to discuss your specific need.

Fundraising
If you are ineligible for state assistance, or it is not enough to manage your expenses, we recommend that you consider fundraising and speak to the transplant social worker about charitable organizations and other resources available to help meet expenses. While fundraising can provide needed funds, proceed with caution and plan carefully before you begin. There are many legal and financial issues to consider. For example, if you have been accepted for Medicaid benefits and funds are raised for you, the donated money could be considered income or an asset, thereby causing a loss of eligibility for Medicaid funds. You may want to speak with an attorney or accountant before you begin.

Before you start accepting donations, you should establish a trust fund or special account in your child’s name. Public funds should never be mixed with personal or family money. Also, if donated money has to be counted as income or assets, it is taxable. State and local laws may set additional guidelines regarding soliciting funds.

Publicly donated money can be handled in several ways. One option is to set up a special trust account at a bank with an appointed administrator to oversee use of the money for the patient’s needs. Sometimes a local volunteer or service group may be willing to hold funds in trust for the family if the group is legally able to do this. Another possibility is to place the donated funds with one of the advocacy/charitable organizations with a clear, written agreement that the money be used to benefit only the transplant patient. It is essential to have timely access to the money, through the established channels. Explore all different possibilities before committing to any of them.

Because public fundraising can be a large undertaking, and you must continue to devote time and attention to caring for your sick child and other family members, it is a good idea to ask for assistance from others to plan and carry out fundraising activities. Your family, friends and neighbors, as well as your religious congregation, local chapters of volunteer and community service groups, or local political leaders may be willing to assist.

You may want to contact the Children’s Organ Transplant Association (COTA) at (800) 366-2682, a national, nonprofit agency that assists families in raising funds. There is no fee for their services, and all funds raised go to the individual in need. It is a good idea to keep your social worker informed of your fundraising progress.

Medical Bills
The medical bills are overwhelming and the last thing parents want to deal with when their child is ill. It is important to keep bills organized from the beginning. It is your job to make sure the hospital has current insurance information, so the bills are paid promptly. Be familiar with your insurance coverage and check every Explanation of Benefits (EOB) for accuracy. If you find problems, call your insurance representative immediately to have the inaccuracy corrected. Billing systems vary, so make sure you understand the hospital’s system and the payment policy because you are the person ultimately responsible for payment.

Why Do We Get So Many Bills?
About a month after your child has been a patient at Johns Hopkins Children’s Center, you will begin to receive medical bills, and will continue to receive bills from the hospital each time your child is admitted. These bills will come from three places. The Johns Hopkins Hospital will send you bills for your child's surgery and inpatient care including the hospital room, supplies and tests performed while your child is an inpatient. You will also receive bills from The Johns Hopkins University Physicians Service for the physicians' fees. Finally, your outpatient clinic visits will be billed on a regular basis from the outpatient department. Each bill will have a contact number to call and discuss any questions. There is also a billing coordinator available at (410) 955-8288 to discuss all three bills.

What Should We Do With These Bills?
The individual bills you receive from the specific services mentioned above (inpatient, physicians and outpatient) contain a total amount that is due to the hospital and university. You may not be responsible for this total. If you have insurance, the hospital and university will (at the same time you receive your bill) bill your primary insurance company. After payment is received, if you have a balance and have secondary insurance, they will then be billed. Sometimes insurers may stall on making payments. If this occurs, Johns Hopkins may expect you to assist in resolving payment issues. You will be billed for your share after these steps are completed. At that time you will need to pay your share or make payment arrangements.

How Can I Stay Organized?
It may seem like an overwhelming task keeping your information organized.

Each bill has many important parts including:

• The primary bill showing the total amount and the secondary bill showing what your insurance has or has not paid.
• Insurance confirmation notices of payment or nonpayment (Explanation of Benefits).
• The final bill which you are responsible for paying.

The paper work must be organized and tracked. To help yourself, it is best to keep a notebook to organize the information and reduce the frustration of searching through miscellaneous scraps of paper. Notebooks with pockets arranged by month may be handy for filing your medical expense receipts. Also, you may want to keep extra forms and insurance documents in a pocket. Whether you use multiple folders or a flexible expanding file, organize your receipts so that you can easily find them when you are speaking with your insurance company or financial counselor. A chart tracking the date of visits, physicians seen and type of visit can also be helpful.