Rapid Organ Recovery Ambulance Program (RORA) has the potential to exploit a marginalized population for the benefit of a different population. Bellevue Hospital Center, the primary applicant of the consortium, is located in Manhattan and serves a diverse population. According to the proposal submitted to Health Resources and Services Administration (HRSA), the target population:
...disproportionately includes ethnic and linguistic minority and immigrant groups who often have limited English proficiency and low health literacy.
The consortium tries to negate concerns about focusing on this population by describing its experience providing them medical services and hinting that the program will benefit that population. In a January 2008 progress report, the issue of minority targeting is briefly addressed. The progress report was mistakenly released in response to Judicial Watch’s Freedom of Information Act request and contained some interesting critiques:
...specifically, data was requested to address perceptions that the public hospital system might be taking organs from immigrants while other populations would benefit. HHC agreed to take the lead in obtaining all necessary political support pending satisfactory responses from the team in early 2008.
While acknowledging the issue, RORA does not deny it nor try to correct it; rather it simply tries to avoid the perception. Any focus on one demographic that is not intrinsic to the study’s topic violates principles of equality.
The target immigrants may be skeptical of organ procurement because of the rampant black markets in many of their origin countries. At the same time, they may be unaccustomed to donation law in the United States and have limited English proficiency leading to misinformation and misunderstanding of organ procurement. A 2005 New York City Comptroller report criticized 75% of New York City hospitals for failing to provide Spanish language information for basic health care, not to mention any other languages. Meanwhile, a 2004 City Council Health Care hearing reported that several immigrants have been forced to sign forms and give consent in situations that they do not understand. The lack of information in several languages impeded treatment and has implications for informed organ donation.
During a time of bereavement and language difficulties, the next of kin will be susceptible to exploitation. Individuals from other nations may mistakenly believe that they have to give their loved ones’ organs for transplantation and the rhetoric employed will further mislead them. A March 2008 article in New England Medical Journal revealed that organ procurement agencies adopt a "presumptive approach for organ donation:
Under this approach, organ-procurement coordinators are encouraged to introduce themselves to families as members of the "medical team" or as "grief counselors," without necessarily disclosing that their role is explicitly one of dual advocacy, since — operating under the assumption that organ donation is simply "the right thing to do" — they simultaneously represent the interests of the patient or potential donor and the pool of potential recipients.
The NEMJ report reveals how the key phrase has changed from “if you decide to donate” to “when you decide to donate.” The language employed would likely influence a native English speaker and could leave English as a Second Language next of kin believing that consent is not an option.
The project targets immigrants because they compose the population surrounding the hospital and also because they typically are minorities. Given that only 50% of eligible donors agree to donate, programs like RORA seek to increase these odds by “obtain[ing] acceptance for the organ donation program from UDCD.” While 82% of Whites are likely to donate, only 75% of Latinos and Asians and only 64% of Blacks are likely to donate. Moreover, data from United Network for Organ Sharing (UNOS) indicates that the majority of transplants at New York University Center, a member of the RORA consortium, benefit Whites disproportionately more than any other race. In 2007, 55 White, 12 Black, 22 Hispanic, 18 Asian and 1 Multiracial patients received transplants. The imbalanced amount is not attributed to any cause, but may include: organ matches and access to health care.
The program makes no guarantees that minority procured organs will be transplanted in minorities and cannot because the Uniform Anatomical Gifts Act stipulates that a donor cannot specify organs based on race. There is a distinction between recruiting and encouraging minorities to sign up as organ donors and treating them as “human subjects” as the RORA program does. The Minority Organ Tissue Transplant Education Organization (MOTTEP) identifies the need to increase minority donors due to the large number of minorities affected by disease and the current allocation system. While donors do not necessarily need to racially match the recipients, some individuals have rare tissue types that may only match someone with the same ethnic background. Nonetheless, research is beginning to reveal that rejection preventing drugs (immunosuppressants) diminish the importance of racial matching. The prescription’s cost and current allocation system that stipulates best match based on race, however, still limit the minority population from receiving transplants.
While Medicare will cover the costs of an organ transplant, it will only cover the cost of the prescription drugs for the following 3 years. This causes some patients to have no practical means to get the transplant and makes many ineligible; in order to receive a transplant, a patient is evaluated as to whether he will be able to care for himself based on mental capacity, health history and financial situation. Financially challenged patients, therefore, will have to rely on good organ matches and the ability to gain Medicare funding. Nonetheless, given that the Institute of Medicine found that minorities have less access to health care regardless of insurance, the challenge is not just financial and so targeting one population for procurement without simultaneously providing better health care is mistreatment.
Equally disconcerting about the population focus is that minorities and immigrants are the same individuals with the highest rates of poverty and least access to health care. A Health Disparity in New York City report shows that 46% of Hispanics, 42% of Blacks, 32% of Asians, and 27% of Whites make less than $25,000. Similarly another New York City report indicates that foreign born New Yorkers have the worst health care access, especially Hispanics;
Even among adults who have health care coverage, foreign-born adults under age 65 who speak Spanish are nearly twice as likely as those who speak English to report being unable to obtain medical care when needed (15% vs. 8%).
The same report specifies that “the foreign-born population appears healthier than those born in the U.S. on some measures, including smoking, obesity, infant mortality, low birthweight, and new HIV diagnoses;” elements screened for organ procurement. The immigrants represent a healthy population ideal for harvesting organs.
In addition to the minority immigrant population, Bellevue Hospital Center serves a relatively large population of mentally ill and homeless individuals. Over 37% of the beds at Bellevue are reserved for psychiatric purposes. The proposal does not further mention the relevant mental health statistics of the neighborhoods it serves; Bellevue serves 3 of the city’s 5 Bureaus and is located near Grammercy Park in Manhattan. The New York City Department of Health and Mental Hygiene indicates that the Grammercy Park neighborhood has the 6th highest number of mentally ill persons out of 42 neighborhoods. The study shows that Grammercy Park in particular has 1298 mentally ill persons and Manhattan in general has the 2nd highest percentage of hospitalized mentally ill people. Curiously, while mentally ill persons can donate organs, they usually are not eligible to receive organs, creating a double standard. In addition to a relatively high population of mentally ill, the homeless in the area are defenseless to exploitation. While New York City Department of of Homeless Services (DHS) does not identify homeless individuals by neighborhood, Manhattan has the most DHS sponsored drop-in homeless shelters in all of New York City (Manhattan’s large population does not diminish the potential for exploitation). While the proposal does not indicate targeting either population, the populations are vulnerable without meticulous oversight.
The program proposal and the grant committee have failed to adequately provide such oversight. The pilot program will operate between the hours of 12 am and 8 am to “permit the rapid transport of potential donors, given the significantly reduced traffic congestion at that time.” Nonetheless, the time slot also reduces the program’s transparency. The proposal has not included adequate oversight separate from those with a stake in the success of the program.
Documents
2007 Extramural Grant Program: (4 pages) Discussion of applicants for HRSA grant.
RORA Application Materials: (16 pages) RORA application-HRSA form.
Emails: (4 pages) Emails between RORA and HRSA. Some discussion of funding and costs.
Goldfrank and Teperman Bios: (9 pages)
Grossman and Dubler Bios:(15 pages)
HRSA RORA application Federal Assistance: (4 pages)
HRSA Rora Clinical Intervention: (36 pages) Program guidance.
HRSA RORA Grant Award: (4 pages) Includes breakdown of grant funding)
Letters: (10 pages) Letters of support from participating doctors and institutions.
NY Conditions of Award: (10 pages) 10 questions posed, 3 questions responded to via email.
RORA application: (27 pages) Proposal and narrative of RORA application.
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