Policies and Price Tags: The Public’s Perception of Face Transplantation and Its Funding

Abstract

Study Design: Survey study. Objective: Facial vascularized composite allotransplantation (FVCA) can cost over 1 million dollars per procedure and is usually not covered by insurance, yet this financial burden and public opinion surrounding this procedure are not well understood. This study is the first to evaluate the layperson’s opinions on the allocation of financial responsibility for FVCA and its inclusion in organ donation registries. Methods: Eight hundred and fifteen laypersons were surveyed through MTurk to assess their agreement with 11 statements about FVCA perceptions, funding, and inclusion on organ donation registries. Responses were analyzed with the Wilcoxon Signed-Rank test, the Kruskal-Wallis test, and the Dunn’s test. Results: The majority of respondents were supportive of FVCA in 10 out of 11 statements (P < 0.0001). They would be willing to undergo FVCA if they suffered from facial disfigurement; believe FVCA is as important as other organ transplants; believe faces should be included on the organ donation registry; support insurance companies providing coverage for FVCA regardless of trauma etiology; support tax dollars funding the procedure; and believe FVCA improves physical appearance and quality of life. Although respondents generally supported their tax dollars funding the procedure, fewer supported this for self-inflicted trauma (P > 0.01). Conclusions: This study highlights a disconnect between public preference for insurance coverage of FVCA and current lack of coverage in practice. Respondents’ acceptance of including faces in organ donation registries may help alleviate the issue of locating a donor, and increasing financial coverage may broaden this procedure’s accessibility to a wider range of individuals.

Background

Facial vascularized composite tissue allotransplantation (FVCA), also known as face transplantation, is becoming rapidly available across the globe with around 40 procedures performed since the first case in 2005.[1] Roughly 30% of these procedures are performed in the United States, with the remainder performed in countries including Spain, France, and Turkey.[2] Despite ongoing discussion regarding the risks and benefits associated with FVCA, it is slowly gaining traction as a viable clinical option for patients with facial trauma. However, major barriers continue to limit access to this life-changing procedure including limited donors and lack of insurance coverage.

In order to provide insurance coverage for a surgical procedure, it must first be deemed as ethical, valid, and the standard of care (SOC). Establishing the ethicality of a procedure often requires ethics committees, institutional review boards, and scholarly articles[3]; in the case of FVCA, the ethical considerations have been hotly debated since the first cadaveric face transplantation in 2005.[4,5,6,7] Critical to this debate is the risk to benefit ratio of FVCA, which has unique features even within the field of transplantation. Similarly to solid organ transplantation (SOT), FVCA requires lifelong immunosuppression, which is associated with side effects including infections, renal and heart failure, and even cancer.[8,9] Apart from these medicationinduced side effects, there are several post-operative complications that may result from FVCA including wound infection, necrosis, acute cell-mediated infection, misalignment of grafts, obstruction of the nasal pathways, exposure keratopathy, and even ptosis and/or ectropion of the eyelids.[10,11,12,13,14,15,16] Complications involving bone must also be considered, as many face transplants to date have included bone[15]: temporomandibular joint ankylosis, malocclusion, and palatal fistulas have all been reported in patients who have undergone FVCA with bone involvement.[15] Studies surrounding cutaneous complications of FVCA have further demonstrated that recipients lose 30% of their soft tissue volume on average between 6 and 36 months posttransplant.[17] A systematic review of long-term outcomes of patients with FVCA revealed that out of 23 FVCA recipients, 65% experienced either a neoplastic or metabolic complication following their procedure, with the most common being transient nephrotoxic episodes, dyslipidemia, and chronic kidney disease.[16]

Unlike SOT, FVCA does not prolong survival; benefits of FVCA are assessed by quality of life improvement and functional and psychosocial outcomes.[18] When assessing the risk to benefit ratio of FVCA, current consensus is that FVCA may be ethical if the harms associated with FVCA are limited.[2,4,6] Next, validity must be demonstrated by procedure success across multiple institutions, with positive outcomes reflected in the literature.[19] Finally, recognition of the procedure as SOC requires expertise from physicians, public insurers, and other relevant stakeholders, including the public. Presently, establishment of FVCA as SOC for craniofacial trauma has not yet been rigorously supported.

In the case of FVCA, the public is considered a social and financial stakeholder, as its opinions and personal tax dollars are critical in establishing FVCA as SOC.[3] However, these opinions of FVCA have not been formally studied. Furthermore, the financial burden of FVCA creates a major barrier to its establishment as SOC: FVCA can cost over 1 million dollars.[3,18] Despite the fact that the cost of FVCA can be comparable to that of conventional reconstructive management with multiple procedures,[20,21] FVCA is still not broadly covered by federal health insurance programs in the United States. In some countries, however, FVCA has been either partially or fully funded by the nation’s public healthcare system.[22] For example, a face transplant performed at New York University Langone Health in 2018 received only a third of its funding from private insurance, whereas a face transplant in Canada in this same year was fully covered by the public healthcare system.[23,24] As FVCA is not typically covered by private insurance, most procedures in the United States have been funded by the Department of Defense (DoD): in 2009, Brigham and Women’s Hospital was awarded $6.4 million dollars for FVCA.[3,18,22] FVCA performed in Cleveland Clinic has similarly been funded by grants from the DoD. Other countries, like the United Kingdom, have not received monetary support for this procedure and have thus yet to perform FVCA. The National Health Services of Scotland, for instance, refused to provide funding to a transplant team in Glasgow due to the belief that the procedure would not benefit many patients.[22] The dearth of funding options and limited supply of funding from the DoD contributes to the limited number of FVCAs that may be performed, restraining the amount of scholarly work produced to support FVCA. This further emphasizes the need for FVCA to be accepted as SOC in order for insurance companies and/or public health care to provide financial coverage.[22] Consequently, the unique financial question that FVCA currently faces is the following: what is the price of improved quality of life, and who should bear the financial burden?

This study is the first to assess the public’s opinion of the financial obligations of FVCA and inclusion of face donation in organ donation registries. The findings of this study contribute to the ongoing conversation surrounding this innovative field and may be used to understand how, as financial and social stakeholders, the public views FVCA as a potential SOC.

Methods

Survey Questions

A survey was created on Qualtrics (Qualtrics, Provo, Utah) to determine the layperson’s perception of FVCA and its funding. Respondents were first presented with 2 preFVCA and post-FVCA photos of patients who had undergone this procedure following self-inflicted facial disfigurement, as well as a brief paragraph to educate respondents on the FVCA procedure, immunosuppressive therapy, and associated risks. Respondents then rated their agreement with 11 statements on a Likert scale from 1 to 5, with 1 meaning “strongly disagree” and 5 meaning “strongly agree.” These items evaluate respondent support of insurance coverage of FVCA, taxpayer funding of FVCA, likelihood of choosing to undergo the procedure themselves in the event of significant craniofacial trauma and amount willing to pay, the inclusion of faces in organ donation registries, whether FVCA improves quality of life and appearance, and the importance of FVCA.

Survey Administration

Amazon’s Mechanical Turk (MTurk) (Amazon.com, Seattle, Washington) was used to crowdsource survey responses from laypeople living in the United States. The survey was presented on Qualtrics and was accessible on computer and mobile device browsers. Before the survey began, a block of text explaining the study was presented to all participants. Participants were informed that survey completion served as their consent to participate. Respondents self-reported demographics after finishing the survey questions.

Inclusion/Exclusion Criteria

The survey was distributed to English-speaking individuals residing in the United States over the age of 18. As healthcare systems vary by country, the survey was limited to those residing in the United States to minimize confounding factors. The age limit was set due to the sensitive nature of some of the topics in the survey. The survey also included 2 attention check questions asking participants to mark a specific answer. Respondents who failed to select the correct answer in both questions were excluded from the study as their responses may not have been completed with full attention. Additionally, respondents who did not complete the survey in full were excluded from the study. Finally, respondents who completed the study in less than 6 minutes (as compared to predicted 15 minutes completion time) were excluded to ensure appropriate response quality. Only respondents who passed all aforementioned criteria were included and therefore rewarded $0.25 upon completion of the survey.

Statistical Analysis

All data was analyzed using Microsoft Excel and RStudio (RStudio, Boston, MA). The 1-Sample Wilcoxon-Signed Rank test was used to determine respondent agreement with the statements. The Shapiro-Wilk test confirmed that the data were non-parametric (P < 0.05), supporting the use of the Wilcoxon-Signed Rank test. The KruskalWallis test and Dunn’s test with a Bonferroni correction (significant at P < 0.05) were used to conduct post-hoc analyses and stratify the results based on age, education level, income level, gender, race and history of plastic surgery. All tests were 2-sided, and the WilcoxonSigned Rank test was considered significant at P < 0.01 to reduce the rate of false positives. The median and interquartile range for each item were calculated, and descriptive statistics were used to analyze the demographic data.

Results

A total of 1025 responses were collected with an average survey completion time of 14.53 minutes. After exclusion criteria was applied, 815 responses were included. The majority of respondents were female (64.7%), Caucasian (75.5%), and between 25-34 years old (29.3%;

Table 1. Demographics of Survey Respondents.

Demographics	No. (%)
No. of Responses	815
Gender
Female	527 (64.7%)
Male	282 (34.6%)
Genderqueer	1 (0.1%)
Non-binary	5 (0.6%)
Age
18-24	61 (7.5%)
25-34	239 (29.3%)
35-44	210 (25.8%)
45-54	151 (18.5%)
55-64	101 (12.4%)
65-74	50 (6.1%)
75-84	3 (0.4%)
Race
White	615 (75.5%)
Hispanic/Latino	36 (4.4%)
Black or African American	49 (6.0%)
Asian	54 (6.6%)
Native Hawaiian or Pacific Islander	1 (0.1%)
Middle Eastern	3 (0.4%)
Other	6 (0.7%)
Multiple races	51 (6.3%)
Education
Less than high school	8 (1.0%)
High school degree	79 (9.7%)
Some college, no degree	161 (19.8%)
Two-year college degree	106 (13.0%)
Four-year college degree	331 (40.6%)
Professional degree/Doctorate	130 (16.0%)
Income
Less than $20,000	163 (20.0%)
$20,000-$39,999	208 (25.5%)
$40,000-$59,999	167 (20.5%)
$60,000-$79,999	125 (15.3%)
$80,000-$99,999	71 (8.71%)
More than $100,000	81 (9.94%)

, Figure 1A to E). Most had a 4-year college degree (40.6%), earned a median income of $20,000-$39,000 (25.5%), and have never undergone plastic surgery (95.6%).

Table 2. One-Sample Wilcoxon Signed Rank Analysis of Responses.

Item	P	Md (IQR)	Conclusion
1	P < .0001	4 (4-5)	Likely to undergo FVCA
2	P < .0001	5 (4-5)	FVCA improves physical appearance
3	P < .0001	5 (4-5)	FVCA improves quality of life
4	P < .0001	4 (3-5)	Insurance should cover FVCA regardless of disfigurement cause
5	P < .0001	2 (1-4)	Insurance should cover FVCA if patient self-inflicted harm
6	P < .0001	4 (2-5)	Likely to support tax dollars funding FVCA regardless of disfigurement cause
7	P < .0001	2 (2-3)	FVCA does not drain resources
8	P < .0001	2 (1-3)	FVCA is not less important than solid organ transplants
9	P < .0001	2 (1-3)	People who self-inflict harm still deserve an FVCA
10	.0198	3 (2-4)	If the disfigurement is self-inflicted, I still support my tax dollars funding FVCA
11	P < .0001	4 (3-5)	Faces should be included in the organ donor registry

Abbreviations: Md, median; IQR, interquartile range.

and Figure 2 summarize the 1-sample Wilcoxon Signed Rank test. Respondents were supportive of FVCA in 10 out of 11 statements (P < 0.0001 for all). Overall, they would be willing to undergo FVCA if they suffered from facial disfigurement; believed FVCA is as important as SOT; believed faces should be included on the organ donation registry; supported insurance companies providing coverage for FVCA regardless of the cause of trauma; supported their tax dollars funding the procedure; and believed FVCA improves both physical appearance and quality of life. Although respondents generally supported their tax dollars funding the procedure, fewer supported this for self-inflicted trauma (38.04% in favor, 40.61% opposed, 21.35% neutral, P > 0.01).

The most common cost range respondents were willing to pay for an FVCA was $10,000-$99,000 (36.43%) (Figure 3). Only 12.05% were willing to pay more than $500,000, yet only 5.68% of those willing to pay this amount reported an income greater than $150,000.

The Kruskal-Wallis test revealed significant differences in responses based on demographic variables. Post-hoc analysis highlighted specifically which demographic groups varied in response to one another based on age, gender, race, history of plastic surgery, education level, and income. While educational level and income were noncontributory to differences in responses, the remainder of the variables demonstrated significant findings:

Age

Post-hoc analysis revealed a significant difference in opinions in the improvement of appearance (item 2) and importance of FVCA compared to SOT (item 8) based on respondent age (P < 0.05 for both). Older respondents (55-64) found FVCA to improve patient appearance more than younger respondents (25-34). However, older respondents (45-74) were less likely than younger (18-44) to think FVCA was as important as other organ transplants.

Gender

Post-hoc analysis revealed that male respondents were more likely to believe that FVCA pulls valuable resources (item 7) and is not as important as SOT (item 8) (P < 0.05 for both).

Race

Stratification by race showed that Asian respondents were less likely than Caucasian respondents and respondents who indicated their race as “Other” to believe that insurance should cover the cost of FVCA if the facial disfigurement is self-inflicted (P < 0.05). Additionally, Caucasian respondents were more likely than Asian respondents to support faces being included on the organ donation registry (P < 0.05).

Previous Plastic Surgery

Respondents with previous plastic surgery were less likely to support insurance companies covering the cost of FVCA for self-inflicted injury and more likely to support the statement that FVCA pulls valuable resources from those who are more in need (P < 0.05 for both). Among those who have undergone plastic surgery, the Kruskal-Wallis test did not reveal a significant difference in responses based on the reason for plastic surgery (congenital malformation, cosmetic reasons, facial trauma, other) (P > 0.05).

Discussion

This study reveals 3 important findings. First, respondents generally support FVCA. Second, there is a disconnect between respondents’ opinions on FVCA financial coverage and the current lack of coverage in practice. Finally, the cause of a patient’s trauma may affect the layperson’s willingness to support FVCA with tax dollars. These results shed light on the public’s opinion of FVCA and may ultimately be used in policy creation to both improve FVCA insurance coverage and include faces in organ donor registries.

Providing insurance coverage for a medical procedure begins with recognition of the procedure as SOC. Once a procedure has been found to be ethical and valid, establishment as SOC is largely dependent on the public’s support of and desire for the procedure.[3,19] Our results support the fact that, according to the public, FVCA should be considered SOC: respondents’ desire of FVCA is suggested by their willingness to undergo FVCA should they suffer from facial disfigurement, even after being informed of the associated risks and lifelong immunosuppression. They additionally expressed a desire to include faces in organ donor registries and believe that this procedure improves patient quality of life, is as important as other organ transplants (procedures already deemed SOC), and does not draw valuable resources from others in need. Respondents also support insurance coverage and tax dollar funding for these procedures. These findings suggest overall public support of FVCA and its funding and encourage acceptance of FVCA as SOC by the legal bodies governing insurance coverage.

While the majority of respondents thought FVCA should be covered by insurance and tax dollars regardless of trauma etiology, support was less universal with selfinflicted etiology. Varying attitudes and personal bias regarding mental health may explain the relatively normal distribution of responses in this item, with a median response of 3 (“neutral”). Respondents may not recognize psychiatric illness as a medical problem in the same way they would a congenital or external cause of craniofacial trauma, and may therefore blame the patient for their disfigurement rather than recognizing it as sequela of mental illness. However, successful management of this sequela first requires management of the underlying mental health condition to avoid subsequent harm; FVCA is therefore contraindicated in patients with active psychiatric illness. Further research is necessary to clarify the intricacies of mental health and transplantation, as this study demonstrates that this is a divisive topic among the public and a complicated issue for patients.

Respondents who were “extremely likely” or “somewhat likely” to undergo FVCA were further asked to indicate how much they would pay for this procedure. Only 12.05% were willing to pay the upper end of FVCA’s true cost of greater than $500,000, but only 5.68% of these respondents reported an income greater than $150,000. This discrepancy in income and amount willing to pay suggests a relative perceived value of FVCA that is often higher than individuals’ ability to pay. FVCA can cost anywhere from $350,000 to approximately 1 million dollars,[20,21] leaving a significant fiscal gap for patients in need of this procedure. Based on reported demographics, only 9.94% of respondents may be able to afford FVCA, underscoring the necessity to relieve this financial barrier through insurance-mediated efforts.

The difficulty of finding face donors is yet another barrier to FVCA. Beyond the standard organ transplant issues of screening for ABO type and negative crossmatch, there is the added need for matching physical characteristics including blood type, age, race, and sex.[25,26] Though human leukocyte antigen (HLA) matching is often completed for solid organ transplant, it is unclear whether this is required for successful VCA.[26] VCA teams are required to communicate these characteristics to their corresponding organ procurement organization (OPO) in order to assess whether the donor is an appropriate match for the recipient.[26] The OPO further requires that VCA teams report skin color (using standardized cards of different colors) and specific physical dimensions of the body part in question.[26]

Anatomical considerations may also preclude face donation—depending on the injury and needs of the recipient, recipient anatomy may not be compatible with the donor’s craniofacial anatomy. Limited data exists regarding determining patient eligibility for FVCA and the criteria selection, though Rifkin et al describes criteria to help identify eligible patients based on the experience of an FVCA surgeon.[27] Significant tissue loss to the majority of the face is a strong indication for FVCA, as autologous reconstruction would not be as feasible given the lack of viable tissue in the face.[27] From a psychosocial standpoint, strong support systems and a lack of active psychiatric issues are further indications for the procedure.[27]

Further contributing to donor scarcity is the fact that faces are not listed as a donation option in organ transplant registries. Instead, those who wish to donate their face must separately indicate this on their form, as this process requires a separate authorization.[28,29] Therefore, although the deceased may have registered as an organ donor, this does not include donation for FVCA by default, so the postmortem consent for face donation is a difficult conversation for families since the donor cannot provide input.[25] Providing individuals the explicit choice to donate their face in an organ registry may help facilitate these conversations and ease family burden.

There is very limited data surrounding the VCA donor pool, and even less about the FVCA donor pool. Wainright et al. was the first to report on nearly all deceased VCA donors in the history of VCA transplantation as identified from the Organ Procurement and Transplantation Network.[30] This study included 11 individuals who donated their face and revealed that all these individuals were white and predominately male (72.7%). All VCA donors in the cohort were also solid organ donors, and 81.8% of individuals that donated their face were between the ages of 18 and 54. Both BMI (22.5-36.2) and cause of death (head trauma, stroke, and anoxia) greatly varied among FVCA donors. However, head trauma in particular was a very common cause of death among FVCA donors (45.5%).[30]

Survey studies have already demonstrated a strong willingness of the public to donate their face.[31,32] Other literature suggests that individuals are less likely to donate their face as compared to other organs such as the kidney or liver, but that there is an increased likelihood of organ donors to donate their face as compared to non-organ donors.[33,34] Given respondents’ support of providing the option for others to donate their face, inclusion of faces in the organ registry may increase FVCA visibility and accessibility, provide face donors with a voice in the donation decision-making process, and encourage establishment of this procedure as SOC. However, VCA transplantation is a much more novel surgical procedure that may be met with more hesitation in comparison to SOT due to the personal connotation that body parts like the hands, face, or genitourinary organs may carry.[30,35,36] A survey of public opinion regarding willingness to donate one’s face revealed that the main reasons limiting individuals from donating their face included the fear of family members seeing their donated body parts on another individual, fear of losing their identity, and a discomfort surrounding the procurement process and funeral concerns.[37] Despite these hesitations, Plana et al. demonstrated that educational initiatives that discuss the indications of FVCA, the process of matching donors with recipients, and operative complications and outcomes may increase the likelihood of individuals’ willingness to donate their face.[35]

Significant variations in opinions are seen among the separate demographic groups in this study. Age stratification reveals that although older participants find that FVCA improves recipient appearance more than younger respondents, the older cohort is less likely to believe FVCA is as important as other organ transplants. The former finding may be due to differing beauty standards among generations, and the latter may result from different perceptions of the importance of appearance and functionality restored by FVCA among age groups. For example, the older cohort may perceive FVCA as a purely cosmetic procedure rather than a functional and life-changing surgery.[38] Males were also found to believe that FVCA is not as important as other organ transplants and that it takes away valuable resources from others. This difference may be attributed to gender-based differences in relative value systems regarding the importance of appearance. Women have historically been subject to increased societal pressure to be physically attractive and desirable, and may consequentially value their own physical appearance more than men, be more impacted by negative body image social pressures, and have lower appearance self-esteem.[39,40,41] Given the relatively greater importance placed on appearance for women, they may therefore be more likely to appreciate a procedure that greatly enhances this quality. Further research is necessary to elucidate differences among male and female perceptions of FVCA and its patients.

Race stratification shows that Asian respondents are less likely to believe insurance should cover the cost of FVCA for self-inflicted facial disfigurement, and less likely to support faces being included on the organ donation registry. This could result from cultural differences between groups and varied value attributed to an individual’s physical appearance and individual identity. Finally, while respondents with a history of plastic surgery would be expected to empathize with other plastic surgery patients, those with previous plastic surgery were surprisingly less likely to support insurance coverage of FVCA and believed FVCA draws away valuable resources from others more in need. Although it is unclear whether these patients had insurance support for their prior plastic surgery procedures, it is possible that previously paying out of pocket rendered respondents less likely to support insurance coverage of other procedures with cosmetic as well as functional benefits.

This study is not without its limitations. In addition to the expected limitations of any survey-based study, differences in understanding of insurance coverage and the organ donation registry may have impacted respondents’ question interpretation. However, these differences also likely represent the general public’s varied knowledge of these topics. Although respondents were shown a screen of information to inform them about FVCA and the risks, it is possible that some respondents did not read the information. Lastly, although some survey items were modeled after questions in other studies, the survey itself is not validated. The medium of MTurk is associated with additional limitations. Respondent demographics are not similar to that of the US as a whole, so opinions of certain groups (younger, more educated, less wealthy, females) may be overemphasized.[42] The large sample size of 815 respondents in this study, however, increases the likelihood that these results can be generalized to the public. Though there are several advantages to online survey studies including cost and time effectiveness, a limitation that must be considered is self-selection bias. Self-selection bias describes the concept that a survey sample is not chosen at random, but rather is dependent on a participant’s willingness and decision to ultimately complete the survey.[43] It is possible that MTurk workers that completed the survey were interested in the topic of FVCA,[44] and were therefore more likely to support the field than individuals who were not interested. The impacts of this potential selection bias may further limit the generalizability of our study’s results, as individuals who do not support the funding of the procedure may not be adequately represented in the survey results. Furthermore, MTurk has been shown to be a very reliable alternative to traditional survey methods for healthrelated topics.[45,46] The high internal consistency and testretest reliability of MTurk workers makes this platform a promising tool for the future of health-related research.[47,48]

Conclusions

This study is the first to assess the layperson’s perspective of financial coverage of FVCA and the role this procedure plays in the context of other organ transplants. These findings may help push policy changes that will increase accessibility of FVCA both in terms of funding and donor availability by including faces on the organ donation registry. With more FVCA procedures, a greater volume of scholarly work may be produced to encourage FVCA as SOC and to optimize patient outcomes.