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The United States does not handle the costs associated with organ transplant services and needs very well. Because of how fragmented our health insurance coverage is between the public and private sector, the costs can vary depending on how the person is insured. However, even with insurance, some people may not be able to get the transplant because they cannot afford the necessary anti-rejection medications afterwards. This is an issue that doesn't come up in NHS statistics. Compared to the vast resources available to secure finances for transplantation in the United States, the NHS appears more focused on how getting more transplants will save the health care system money every year.

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The many ways the costs of a transplant may be covered in the United States

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The many ways the costs of a transplant may be covered in the United States

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Depending on the financial situation and insurance coverage a person has access to, they may find themselves looking at several methods of paying for their surgery and post-surgical needs.

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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.

Private health insurance

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.

Insurance "caps"

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.

Tips

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

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:

kidneys

kidney-pancreas

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

lung

heart-lung

liver, including transplants necessitated by hepatocellular carcinoma (HCC)

intestines

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 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 ([800] 633-4227)/ TTY (877) 486-2048 or visit www.medicare.gov (click on Medicare Basics > Part D).

MediGap Plans

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 programs

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 >

State "high risk" insurance pool

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

Medicaid is a federal and state government health insurance program for certain low-income
individuals. Each state determines criteria for:

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

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

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

references

Fundraising campaigns

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 >

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Covering transplant costs - Transplant Living

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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.

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Snapshot of NHS statistics from Factsheet 7

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Snapshot of NHS statistics from Factsheet 7

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Though much of this data is more than 10 years old, it is interesting to look at when discussing how the United States handles the costs associated with organ transplantation.
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Only 3% of the NHS budget is spent on services related to kidney failure per year.

Dialysis costs an average of £30,800 per patient per year, whereas immunosuppressant medications cost £5,000 per patient per year.

On April 1, 2009, 6,920 patients were on the transplant waiting list, the majority of whom were on dialysis. The dialysis costs to the NHS were approximately £193 million per year. If each patient on dialysis received a transplant, the cost would be go down to about £41 million per year, saving the NHS £152 million per year.
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It seems clear that transplants save the NHS money over the long run, versus keeping patients on dialysis. The focus in these statistics is not on how to pay for transplants but on how having greater organ supply will save the NHS money in the long-term.

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Donation is life-changing for recipients

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Donation is life-changing for recipients

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After receiving donations, many recipients will be able to live long, healthy lives.

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Made Possible: Teen Blake’s Heart/Soccer (:60)

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Why I find this topic critically important in health care today

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America is the recipient of two kidney transplants

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Perceived equity vs actuality in United States

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Perceived equity vs actuality in United States

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"[...] equal access to organs does not mean equal access to organ transplantation. Even if there were a sufficient supply of suitable organs for transplantation, the reality is that the uninsured, underinsured and the poor do not currently have an equal opportunity to fully realize the benefits of organ transplantation because they do not have equal access to very expensive and necessary post-transplant immunosuppressant medications."

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Journal of Ethics | American Medical Association

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In almost every aspect of society, the resource-rich have an advantage over the resource-poor. The richer people are, the longer and healthier are their lives [1,2]. The philosopher Norman Daniels has argued that social policies are responsible for the inequalities that produce health disparities and suggests that we must look upstream from the point of medical delivery when examining the fairness of the distribution of these goods. Daniels uses Rawls' theory of justice as fairness [3] as the basis for his argument that health care is morally unique because it protects an individual's equality of opportunity:

The central moral importance, for purposes of justice, of preventing and treating disease and disability with effective health care services...derives from the way in which protecting normal functioning contributes to protecting opportunity...by keeping people close to normal functioning, health care preserves for people the ability to participate in the political, social and economic life of their society [1].

That is, by keeping people close to normal functioning, medicine also aims at the goal of protecting their equality of opportunity. In this policy forum, I will consider the extent to which medicine has met this goal in the area of organ transplantation.

Daniels claims that a principle that assures fair equality of opportunity will-among other things-prohibit discriminatory barriers to accessing the goods of health care. In the area of organ transplantation, the Uniform Anatomical Gift Act (UAGA) and the National Organ Transplant Act (NOTA) are intended in part to ensure this kind of equity of access to organs [4]. An important purpose of NOTA was to prohibit the assignment of a monetary value to an organ in order to prevent the commercialization of organs, thereby ensuring some level of equity of access to organs-and by extension to organ transplantation. Discrimination in access to deceased donor organs based on the socioeconomic status of the transplant candidate is prohibited. Title III of NOTA on the "Prohibition of Organ Purchases" states that it is "...unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce" [5].

It is in part because of this ban on socioeconomic discrimination that organ transplantation enjoys a privileged position with regard to the presumed fairness of its access system. It is often viewed as one of the only arenas in health care in which everyone has an equal opportunity of access, regardless of race, gender, socioeconomic status, celebrity, etc.-despite an absolute scarcity of resources.

There are currently more than 96,000 people listed on the United Network for Organ Sharing (UNOS) deceased organ donor waiting list, all of whom are waiting for an organ from the approximately 6,000 deceased individuals who donate organs in the U.S. each year [6]. A recent description of the UNOS waiting list and organ distribution system exemplifies the perception of the system's impartiality and fairness:

The rich ones don't get a leg up by mounting publicity campaigns or bribing doctors on the side. The poor ones don't have to worry because they know the list guarantees them an equal opportunity to live. There is no public outcry that the chief executive officer or celebrity has a secret edge over the others on the list [7].

The focus on equity and equality of access to organs is understandable given the persistent and critical scarcity of organs; however, it has overshadowed other critically important justice-related problems facing the transplant community. For instance, attention is often skewed to the particular ways in which the wealthy can leverage their socioeconomic status to gain access to organs, for example, by purchasing them. While it is true that attention should be paid to issues of unequal access to organs based on the greater advantages that wealthier transplant candidates have, the current national focus on access to organs only-and to deceased donor organs in particular-as a measure of equality of access to organ transplantation misses a larger and more pressing issue of inequality at stake in the area of transplantation: that of inequality in access to successful organ transplantation.

Only the Appearance of Equity

Indeed it may at first appear that any problems related to equity and equality of access to organ transplantation are related almost solely to this organ shortage. That is, one might think that if the supply of organs were adequate to meet the demand for them, everyone who needed organs could have them, and questions of equity and equality of access would become largely irrelevant, as they have in the case of dialysis. This, however, is mistaken; equal access to organs does not mean equal access to organ transplantation. Even if there were a sufficient supply of suitable organs for transplantation, the reality is that the uninsured, underinsured and the poor do not currently have an equal opportunity to fully realize the benefits of organ transplantation because they do not have equal access to very expensive and necessary post-transplant immunosuppressant medications. Looking upstream as Daniels suggests, it appears that the wealthy and well-insured do have a socioeconomic advantage over others on the national waiting list precisely because they can afford the necessary immunosuppressants. Without this medication, an equal opportunity to live cannot be guaranteed, even with a new organ.

The financial burdens associated with access to post-transplant medications can be significant. For example, kidney transplant recipients who qualify for Medicare coverage based solely on end-stage renal disease (ESRD) currently receive 80-percent coverage for immunosuppressant medications for a maximum period of 36 months. Given that the average half-life of a deceased donor kidney transplant (i.e., the point at which 50 percent of the organs will have survived and 50 percent will have failed) is 10 years and the average cost of the immunosuppressant medications is approximately $1,500 to $2,000 per month, even with ESRD Medicare coverage, poor kidney transplant recipients can expect to face medication costs of $300 to $400 per month for the first three years of their transplant and $1,500 to $2,000 per month thereafter, or as much as $182,400 over 10 years in costs not reimbursed by Medicare [8].

A potential transplant candidate with ESRD on Medicare and employed fulltime earning the 2007 minimum wage rate in Illinois of $6.50 per hour can expect to spend 26 to 35 percent of her pretax income on these medications alone for her first three years post-transplant. (And that's assuming she is able to continue employment with minimal interruption from her organ transplant procedure and has no supplemental insurance). After paying for her medications, she will have a pretax monthly income of between $737.50 and $837.50. Once Medicare coverage ends after three years, even assuming no increase in the costs of immunosuppressant medications, the monthly costs for the immunosuppressant medications necessary to maintain organ function will exceed her monthly income [9].

The costs of post-transplant medications pose a real and significant barrier to successful organ transplantation based on the socioeconomic circumstances of the recipient. This barrier is not neutral; the wealthy do have an edge and the poor are not guaranteed an equal opportunity to live. In some cases, these costs prevent patients who are otherwise medically good candidates for transplantation from making it onto the national deceased organ donor waiting list, either by their own choice or based on the recommendations of their health care team. Those who do get on the waiting list and receive a deceased donor organ transplant but cannot in the end afford the necessary medication will inevitably experience organ failure. Among the survivors, some will go back on dialysis and possibly back on the national deceased donor organ waiting list. Many will die while waiting on the list; others will simply wait to die. Poverty is not only a significant barrier to organ transplantation, it is in effect a de facto contraindication for it.

Even if we could immediately and successfully implement measures to ensure that the poor have an equal opportunity to access suitable organs for transplantation, the reality is that the poor do not currently have an equal opportunity to access the necessary postoperative immunosuppressant medications to maintain and fully realize the benefits of organ transplantation. In addressing solutions to the problem of access to organ transplantation, it is important to focus on the full scope of the problem in both its pre- and post-operative aspects. In the context of organ transplantation, justice requires both equal access to organs and equal access to the medications needed to maintain those transplanted organs. The current inequities in access to successful organ transplantation based on the socioeconomic status of potential transplant recipients do not assure fair equality of opportunity and thus are fundamentally unjust. The structural inequalities inherent in the larger health care and social systems in which organ transplantation takes place are not impartial but pose very real barriers to access based on the socioeconomic status of potential organ transplant candidates.

Equal access to successful transplantation, regardless of the socioeconomic status of the potential organ transplant recipient, would at minimum require guaranteed long-term access to post-transplant immunosuppressant medications-like the guaranteed access to dialysis currently provided by the federal government. Optimally, it would require significant changes to the fundamental structural inequalities inherent in the larger health care and social systems. Right now the only thing that the poor are guaranteed is that there will still be a spot open for them at the dialysis center if and when their transplanted kidneys fail because they cannot afford the necessary immunosuppressant medications to maintain organ function. When one looks upstream from the point of access to organs, one sees that the current system is not impartial. Moreover, its partiality is not just.

Citation

Virtual Mentor. 2007;9(6):441-445.

DOI
10.1001/virtualmentor.2007.9.6.pfor1-0706.
The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.

Author Information

Mary Simmerling, PhD is the director of research integrity at the University of Chicago, where she is also a senior fellow in the MacLean Center for Clinical Medical Ethics and an associate in the Department of Surgery, Section of Transplantation.

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Beyond Scarcity: Poverty as a Contraindication for Organ Transplantation

# data[].attributes.attachment_link.description
In almost every aspect of society, the resource-rich have an advantage over the resource-poor. The richer people are, the longer and healthier are their lives [1,2]. The philosopher Norman Daniels has argued that social policies are responsible for the inequalities that produce health disparities and suggests that we must look upstream from the point of medical delivery when examining the fairness of the distribution of these goods.

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Medicare coverage for end-stage renal disease covers 80% of immunosuppressant medications for 36-months.

However, about half of the people with a kidney transplant will live at least 10 more years post-transplant.

Total lifetime out-of-pocket costs with Medicare coverage can be as much as $182,400.

Poverty becomes a reason for why people do not have needed organ transplants in the United States.

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Journal of Ethics | American Medical Association

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In almost every aspect of society, the resource-rich have an advantage over the resource-poor. The richer people are, the longer and healthier are their lives [1,2]. The philosopher Norman Daniels has argued that social policies are responsible for the inequalities that produce health disparities and suggests that we must look upstream from the point of medical delivery when examining the fairness of the distribution of these goods. Daniels uses Rawls' theory of justice as fairness [3] as the basis for his argument that health care is morally unique because it protects an individual's equality of opportunity:

The central moral importance, for purposes of justice, of preventing and treating disease and disability with effective health care services...derives from the way in which protecting normal functioning contributes to protecting opportunity...by keeping people close to normal functioning, health care preserves for people the ability to participate in the political, social and economic life of their society [1].

That is, by keeping people close to normal functioning, medicine also aims at the goal of protecting their equality of opportunity. In this policy forum, I will consider the extent to which medicine has met this goal in the area of organ transplantation.

Daniels claims that a principle that assures fair equality of opportunity will-among other things-prohibit discriminatory barriers to accessing the goods of health care. In the area of organ transplantation, the Uniform Anatomical Gift Act (UAGA) and the National Organ Transplant Act (NOTA) are intended in part to ensure this kind of equity of access to organs [4]. An important purpose of NOTA was to prohibit the assignment of a monetary value to an organ in order to prevent the commercialization of organs, thereby ensuring some level of equity of access to organs-and by extension to organ transplantation. Discrimination in access to deceased donor organs based on the socioeconomic status of the transplant candidate is prohibited. Title III of NOTA on the "Prohibition of Organ Purchases" states that it is "...unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce" [5].

It is in part because of this ban on socioeconomic discrimination that organ transplantation enjoys a privileged position with regard to the presumed fairness of its access system. It is often viewed as one of the only arenas in health care in which everyone has an equal opportunity of access, regardless of race, gender, socioeconomic status, celebrity, etc.-despite an absolute scarcity of resources.

There are currently more than 96,000 people listed on the United Network for Organ Sharing (UNOS) deceased organ donor waiting list, all of whom are waiting for an organ from the approximately 6,000 deceased individuals who donate organs in the U.S. each year [6]. A recent description of the UNOS waiting list and organ distribution system exemplifies the perception of the system's impartiality and fairness:

The rich ones don't get a leg up by mounting publicity campaigns or bribing doctors on the side. The poor ones don't have to worry because they know the list guarantees them an equal opportunity to live. There is no public outcry that the chief executive officer or celebrity has a secret edge over the others on the list [7].

The focus on equity and equality of access to organs is understandable given the persistent and critical scarcity of organs; however, it has overshadowed other critically important justice-related problems facing the transplant community. For instance, attention is often skewed to the particular ways in which the wealthy can leverage their socioeconomic status to gain access to organs, for example, by purchasing them. While it is true that attention should be paid to issues of unequal access to organs based on the greater advantages that wealthier transplant candidates have, the current national focus on access to organs only-and to deceased donor organs in particular-as a measure of equality of access to organ transplantation misses a larger and more pressing issue of inequality at stake in the area of transplantation: that of inequality in access to successful organ transplantation.

Only the Appearance of Equity

Indeed it may at first appear that any problems related to equity and equality of access to organ transplantation are related almost solely to this organ shortage. That is, one might think that if the supply of organs were adequate to meet the demand for them, everyone who needed organs could have them, and questions of equity and equality of access would become largely irrelevant, as they have in the case of dialysis. This, however, is mistaken; equal access to organs does not mean equal access to organ transplantation. Even if there were a sufficient supply of suitable organs for transplantation, the reality is that the uninsured, underinsured and the poor do not currently have an equal opportunity to fully realize the benefits of organ transplantation because they do not have equal access to very expensive and necessary post-transplant immunosuppressant medications. Looking upstream as Daniels suggests, it appears that the wealthy and well-insured do have a socioeconomic advantage over others on the national waiting list precisely because they can afford the necessary immunosuppressants. Without this medication, an equal opportunity to live cannot be guaranteed, even with a new organ.

The financial burdens associated with access to post-transplant medications can be significant. For example, kidney transplant recipients who qualify for Medicare coverage based solely on end-stage renal disease (ESRD) currently receive 80-percent coverage for immunosuppressant medications for a maximum period of 36 months. Given that the average half-life of a deceased donor kidney transplant (i.e., the point at which 50 percent of the organs will have survived and 50 percent will have failed) is 10 years and the average cost of the immunosuppressant medications is approximately $1,500 to $2,000 per month, even with ESRD Medicare coverage, poor kidney transplant recipients can expect to face medication costs of $300 to $400 per month for the first three years of their transplant and $1,500 to $2,000 per month thereafter, or as much as $182,400 over 10 years in costs not reimbursed by Medicare [8].

A potential transplant candidate with ESRD on Medicare and employed fulltime earning the 2007 minimum wage rate in Illinois of $6.50 per hour can expect to spend 26 to 35 percent of her pretax income on these medications alone for her first three years post-transplant. (And that's assuming she is able to continue employment with minimal interruption from her organ transplant procedure and has no supplemental insurance). After paying for her medications, she will have a pretax monthly income of between $737.50 and $837.50. Once Medicare coverage ends after three years, even assuming no increase in the costs of immunosuppressant medications, the monthly costs for the immunosuppressant medications necessary to maintain organ function will exceed her monthly income [9].

The costs of post-transplant medications pose a real and significant barrier to successful organ transplantation based on the socioeconomic circumstances of the recipient. This barrier is not neutral; the wealthy do have an edge and the poor are not guaranteed an equal opportunity to live. In some cases, these costs prevent patients who are otherwise medically good candidates for transplantation from making it onto the national deceased organ donor waiting list, either by their own choice or based on the recommendations of their health care team. Those who do get on the waiting list and receive a deceased donor organ transplant but cannot in the end afford the necessary medication will inevitably experience organ failure. Among the survivors, some will go back on dialysis and possibly back on the national deceased donor organ waiting list. Many will die while waiting on the list; others will simply wait to die. Poverty is not only a significant barrier to organ transplantation, it is in effect a de facto contraindication for it.

Even if we could immediately and successfully implement measures to ensure that the poor have an equal opportunity to access suitable organs for transplantation, the reality is that the poor do not currently have an equal opportunity to access the necessary postoperative immunosuppressant medications to maintain and fully realize the benefits of organ transplantation. In addressing solutions to the problem of access to organ transplantation, it is important to focus on the full scope of the problem in both its pre- and post-operative aspects. In the context of organ transplantation, justice requires both equal access to organs and equal access to the medications needed to maintain those transplanted organs. The current inequities in access to successful organ transplantation based on the socioeconomic status of potential transplant recipients do not assure fair equality of opportunity and thus are fundamentally unjust. The structural inequalities inherent in the larger health care and social systems in which organ transplantation takes place are not impartial but pose very real barriers to access based on the socioeconomic status of potential organ transplant candidates.

Equal access to successful transplantation, regardless of the socioeconomic status of the potential organ transplant recipient, would at minimum require guaranteed long-term access to post-transplant immunosuppressant medications-like the guaranteed access to dialysis currently provided by the federal government. Optimally, it would require significant changes to the fundamental structural inequalities inherent in the larger health care and social systems. Right now the only thing that the poor are guaranteed is that there will still be a spot open for them at the dialysis center if and when their transplanted kidneys fail because they cannot afford the necessary immunosuppressant medications to maintain organ function. When one looks upstream from the point of access to organs, one sees that the current system is not impartial. Moreover, its partiality is not just.

Citation

Virtual Mentor. 2007;9(6):441-445.

DOI
10.1001/virtualmentor.2007.9.6.pfor1-0706.
The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.

Author Information

Mary Simmerling, PhD is the director of research integrity at the University of Chicago, where she is also a senior fellow in the MacLean Center for Clinical Medical Ethics and an associate in the Department of Surgery, Section of Transplantation.

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Beyond Scarcity: Poverty as a Contraindication for Organ Transplantation

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In almost every aspect of society, the resource-rich have an advantage over the resource-poor. The richer people are, the longer and healthier are their lives [1,2]. The philosopher Norman Daniels has argued that social policies are responsible for the inequalities that produce health disparities and suggests that we must look upstream from the point of medical delivery when examining the fairness of the distribution of these goods.

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This graphic is from https://transplants.org/get-informed/ and shows the the amount of money a person must prove they have before being placed on the waitlist for various transplant surgeries. They are required to have proof of funding for 20% of overall costs.

If a patient cannot afford the costs of medication after the surgery, they may denied an organ they matched with.

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NHS statistics on the costs associated with end-stage renal disease and kidney transplants

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NHS statistics on the costs associated with end-stage renal disease and kidney transplants

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Organizations in America that are devoted to fundraising to help cover transplant costs

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Organizations in America that are devoted to fundraising to help cover transplant costs

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https://helphopelive.org/

https://transplants.org/

https://www.americantransplantfoundation.org/programs/pap/

https://bonemarrow.org/

https://cota.org/ (specifically designed to raise funds for children and young adults that need a transplant)

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Americans have to get creative to cover costs

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Americans have to get creative to cover costs

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In this article, Hedda Martin describes using crowd-sourced fundraising methods to raise the money she needed to be placed on the waitlist for a heart. Originally, she was denied because she could not prove she had the money to cover the costs.

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When Patrick Mannion heard about the Michigan woman denied a heart transplant because she couldn't afford the anti-rejection drugs, he knew what she was up against.

On social media posts of a letter that went viral last month, Hedda Martin, 60, of Grand Rapids, was informed that she was not a candidate for a heart transplant because of her finances. It recommended "a fundraising effort of $10,000."

Two years ago, Mannion, of Oxford, Conn., learned he needed a double-lung transplant after contracting idiopathic pulmonary fibrosis, a progressive, fatal disease. From the start, hospital officials told him to set aside $30,000 in a separate bank account to cover the costs.

Mannion, 59, who received his new lungs in May 2017, reflected: "Here you are, you need a heart - that's a tough road for any person," he said. "And then for that person to have to be a fundraiser?"

Martin's case sparked outrage over a transplant system that links access to a lifesaving treatment to finances. But requiring proof of payment for organ transplants and post-operative care is common, transplant experts say.

"It happens every day," said Arthur Caplan, a bioethicist at the New York University Langone Medical Center. "You get what I call a 'wallet biopsy.'"

Virtually all of the nation's more than 250 transplant centers, which refer patients to a single national registry, require patients to verify how they will cover bills that can total $400,000 for a kidney transplant or $1.3 million for a heart, plus monthly costs that average $2,500 for anti-rejection drugs that must be taken for life, Caplan said. Coverage for the drugs is more scattershot than for the operation itself, even though transplanted organs will not last without the medicine.

For Martin, the social media attention helped. Within days, she had raised more than $30,000 through a GoFundMe account, and officials at Spectrum Health confirmed she was added to the transplant waiting list.

In a statement, officials there defended their position, saying that financial resources, along with physical health and social well-being, are among crucial factors to consider.

"The ability to pay for post-transplant care and life-long immunosuppression medications is essential to increase the likelihood of a successful transplant and longevity of the transplant recipient," officials wrote.

In the most pragmatic light, that makes sense. More than 114,000 people are waiting for organs in the U.S. and fewer than 35,000 organs were transplanted last year, according to the United Network for Organ Sharing, or UNOS. Transplant centers want to make sure donated organs aren't wasted.
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"If you're receiving a lifesaving organ, you have to be able to afford it," said Kelly Green, executive director of HelpHopeLive, the Pennsylvania organization that has helped Mannion.

His friends and family have rallied, flocking to fundraisers that ranged from hair salon cut-a-thons to golf tournaments, raising nearly $115,000 so far for transplant-related care.

Allowing financial factors to determine who gets a spot on the waiting list strikes many as unfair, Caplan said.

"It may be a source of anger, because when we're looking for organs, we don't like to think that they go to the rich," he said. "In reality, it's largely true."

Nearly half of the patients waiting for organs in the U.S. have private health insurance, UNOS data show. The rest are largely covered by the government, including Medicaid, the federal program for the disabled and poor, and Medicare.

Medicare also covers kidney transplants for all patients with end-stage renal disease. But, there's a catch. While the cost of a kidney transplant is covered for people younger than 65, the program halts payment for anti-rejection drugs after 36 months. That leaves many patients facing sudden bills, said Tonya Saffer, vice president of health policy for the National Kidney Foundation.

Legislation that would extend Medicare coverage for those drugs has been stalled for years.

For Alex Reed, 28, of Pittsburgh, who received a kidney transplant three years ago, coverage for the dozen medications he takes ended Nov. 30. His mother, Bobbie Reed, 62, has been scrambling for a solution.

"We can't pick up those costs," said Reed, whose family runs an independent insurance firm. "It would be at least $3,000 or $4,000 a month."

Prices for the drugs, which include powerful medications that prevent the body from rejecting the organs, have been falling in recent years as more generic versions have come to market, Saffer said.

But "the cost can still be hard on the budget," she added.

It's been a struggle for decades to get transplants and associated expenses covered by insurance, said Dr. Maryl Johnson, a heart failure and transplant cardiologist at the University of Wisconsin School of Medicine and Public Health.

"It's unusual that there's 100 percent coverage for everything," said Johnson, a leader in the field for 30 years.

GoFundMe efforts have become a popular way for sick people to raise money. About a third of the campaigns on the site target medical needs, the company said.

But when patients need to raise money, they should use fundraising organizations specifically aimed at those costs, transplant experts say, including HelpHopeLive, the National Foundation for Transplants and the American Transplant Foundation.

There's no guarantee funds generated through such general sites such as GoFundMe will be used for the intended purpose. In addition, the money likely will be regarded as taxable income that could jeopardize other resources, said Michelle Gilchrist, president and chief executive for the National Foundation for Transplants.

Her group, which helps about 4,000 patients a year, has raised $82 million for transplant costs since 1983, she said. Such efforts usually involve a huge public-relations push. Still, 20 percent of the patients who turn to NFT each year fail to raise the needed funds, Gilchrist said.

In those cases, the patients don't get the organs they need. "My concern is that health care should be accessible for everyone," she said, adding: "Ten thousand dollars is a lot to someone who doesn't have it."

Every transplant center in the U.S. has a team of social workers and financial coordinators who help patients negotiate the gaps in their care. Lara Tushla, a licensed clinical social worker with the Rush University transplant program in Chicago, monitors about 2,000 transplant patients. She urges potential patients to think realistically about the costs they'll face.

"The pharmacy will not hand over a bag full of pills without a bag full of money," she said. "They will not bill you. They want the copays before they give you the medication."
KHN's coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

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No Cash, No Heart. Transplant Centers Require Proof Of Payment.

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When Patrick Mannion heard about the Michigan woman denied a heart transplant because she couldn't afford the anti-rejection drugs, he knew what she was up against. On social media posts of a letter that went viral last month, Hedda Martin, 60, of Grand Rapids, was informed that she was not a candidate for a heart transplant because of her finances.