Planning to Pay for a Transplant

It is important to understand that having a lung transplant can be expensive before, during, and after the transplant. Your health insurance may cover many of the costs, but not all of them.

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Summary
  • Lung transplant requires payments be made by insurance and patients and their families.
  • Your health insurance may cover many of the costs, but not all of them.

Lung transplant requires payments be made by insurance and patients and their families. Some examples of costs for which you may be fully or partially responsible include:1

  • Laboratory tests
  • Medications, including drugs that suppress the immune system to prevent organ rejection
  • Organ procurement (obtaining the organ from the donor)
  • In-hospital stays
  • Transportation to and from the transplant center
  • Rehabilitation, including physical therapy or occupational therapy
  • Nonmedical costs, such as living expenses or relocating to a residence close to the transplant center, if necessary

Making a Financial Plan

Members of the transplant team, such as the center's financial coordinator and social worker, can help you develop a plan to pay for all of the transplant-related expenses, including and especially those not covered by your insurance. Here is a list of questions to ask your center's financial coordinator. 

Cystic Fibrosis Foundation Compass is a personalized service that can help you with insurance, financial, legal, and other issues. You can contact Compass at any point to learn more about financial assistance programs to help you afford a transplant. You can contact Compass at:

844-COMPASS (844-266-7277)
Monday - Thursday, 9 a.m. - 7 p.m. ET
Friday, 9 a.m. - 3 p.m. ET
compass@cff.org

Insurance Coverage

Insurance coverage, and the amount of money you have to pay, varies by type of insurance. Most health insurance and government programs, including Medicaid, will pay for a lung transplant, although it may not cover all of the costs. Medicaid, however, will only cover transplants in the state from which you receive it. For example, if you receive Medicaid in Ohio, your transplant would need to be done at a center in Ohio.

If you have Medicare or Medicaid, contact your insurance representative to find out what your policy will cover. More information about Medicare and transplant coverage is available on the Medicare website. Medicaid coverage differs by state. For more information about your policy, see the Medicaid website. CF Foundation Compass can help you understand what is covered and what the costs are regardless of what type of insurance you have.

If you have private insurance, such as one through your job or a family member's job, contact the company to find out if there are any limitations to your coverage or specific requirements related to transplant. Review a list of important questions to ask your insurance company.

Social Security Disability

You also may be eligible for Social Security Disability, which provides a monthly income. The Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs provide assistance to people with disabilities. Although they are different programs, they are both managed by the Social Security Administration. SSDI and SSI allow people who are deemed disabled to access Medicare and Medicaid, but there are several things you should keep in mind, including:

  • You have to meet specific medical criteria to be eligible for either program
  • You must be unable to work substantially; there are limits to how much you can work and still apply for disability
  • There is a waiting period from when you apply and when you are approved
  • There is a delay from when you are approved to when you receive your monthly payment
  • For Medicare, there is a two-year waiting period from when you receive SSDI payment until you are eligible for Medicare
  • Medicare Advantage plans have networks and may restrict access to out-of-state transplant centers or have limited options within a geographic area

It is also important to realize that SSDI may stop about one year after transplant if you are no longer considered disabled.

Ask a Compass case manager, the financial coordinator at the transplant center, or your social worker for more information about applying for Social Security Disability.

Getting Financial Assistance

Your financial coordinator or social worker may be able to put you in touch with nonprofit groups that provide financial assistance to transplant recipients. Many such organizations are listed in this Financial Resources Directory available from the United Network for Organ Sharing (UNOS).

Most insurance companies will cover the cost of the transplant itself. Other hidden expenses, however, such as transportation to and from your transplant center or relocation costs, can quickly add up and make it difficult for many with CF and their families to afford a transplant on their own. Organizations such as Children's Organ Transplant Association (COTA), which also helps adults, can help you or your loved ones deal with these extensive costs by organizing fundraisers, reaching out to local communities, and generating support to help cover transplant-related expenses. This can help eliminate many of the financial barriers standing between you and the lifesaving transplant you need.

Another option is to raise funds yourself to help pay for transplant-related expenses. There are organizations that help transplant patients establish personal websites to raise funds. Your financial coordinator or social worker can help you identify an organization that is appropriate for you. A list of important questions to ask when choosing a fundraising organization is available from UNOS. However, this kind of fundraising can affect your eligibility for income-based programs, such as Medicaid.


REFERENCES

1. U.S. Department of Health and Human Services: Organ Transplantation - The Process 

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Lung Transplantation
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