The Americans with Disabilities Act (ADA): Allocation of Scarce Medical Resources During a Pandemic
The Americans with Disabilities Act (ADA):
Allocation of Scarce Medical Resources
During a Pandemic
Updated October 24, 2008
Nancy Lee Jones
Legislative Attorney
American Law Division
The Americans with Disabilities Act (ADA):
Allocation of Scarce Medical Resources
During a Pandemic
Summary
The emergence and rapid spread of a new avian influenza virus (H5N1) and its
potential for causing a human influenza pandemic have given rise to numerous
issues. One of these is the general lack of surge capacity within the U.S. health-care
system. Essentially, this means that a severe influenza pandemic could lead to much
greater demand for vaccines, antiviral medications, and other medical technology,
such as ventilators, than there are supplies. This potential imbalance has led to
recommendations for priorities for medical resources for certain categories of
individuals, including recommendations in the U.S. Department of Health and
Human Services (HHS) Pandemic Influenza Plan and more recent guidance by a
federal interagency working group. This report examines selected proposed priorities
in light of the nondiscrimination provisions of the Americans with Disabilities Act
(ADA) and Section 504 of the Rehabilitation Act of 1973. It will be updated as
appropriate.
Contents
In troduction ......................................................1
Background ......................................................1
Federal Pandemic Influenza Plan and Selected Allocation Proposals..........4
National Strategy and Implementation Plan for Pandemic Influenza......4
National Strategy for Pandemic Influenza.......................4
National Strategy for Pandemic Influenza Implementation Plan......4
HHS 2005 Recommendations Regarding Prioritization................5
Interagency Working Group Guidance on Allocating and
Targeting Pandemic Influenza Vaccine.........................6
Other Allocation Proposals......................................8
The Americans with Disabilities Act and Section 504
of the Rehabilitation Act.......................................11
Overview ...................................................11
Definition of Disability........................................12
Application of the ADA and Section 504 to the Allocation of
Scarce Medical Resources..................................13
In troduction .............................................13
Individual Medical Treatment Decisions.......................14
Alexander v. Choate.......................................14
Oregon Medicaid Waiver Proposals..........................15
Organ Transplant Policies..................................15
Application ..............................................16
List of Figures
Figure 1. Vaccination Tiers and Target Groups for a Severe Pandemic........8
The Americans with Disabilities Act (ADA):
Allocation of Scarce Medical Resources
During a Pandemic
Introduction
The emergence and rapid spread of a new avian influenza virus (H5N1) and its
potential for causing a human influenza pandemic have given rise to numerous
issues. One of these is the general lack of surge capacity within our health-care
system. Essentially, this means that a severe influenza pandemic could lead to much
greater demand for vaccines, antiviral medications, and other medical technology,
such as ventilators, than there are supplies. This potential imbalance has led to
recommendations for priorities for medical resources for certain categories of
individuals, including recommendations in the U.S. Department of Health and
Human Services (HHS) Pandemic Influenza Plan and more recent guidance by a
federal interagency working group. This report examines selected proposed priorities
in light of the nondiscrimination provisions of the Americans with Disabilities Act
(ADA) and Section 504 of the Rehabilitation Act of 1973.
Background
The increased transmission of the H5NI virus among avian populations has
raised concerns about a possible mutation of the virus that might cause a human1
influenza pandemic. The possibility of a human influenza pandemic similar to the
one in 1918, or even similar to the more moderate pandemics of 1957 and 1968, has
raised questions about the ability of our health-care system to respond to such a
crisis.2 Julie Gerberding, the Director of the Centers for Disease Control and
1 For a detailed discussion of pandemic influenza, preparedness, and response, see CRS
Report RL33145, Pandemic Influenza: Domestic Preparedness Efforts, by Sarah A. Lister.
2 For a history of the 1918 pandemic, see John M. Barry, THE GREAT INFLUENZA (Penguin
Books: New York, 2004). “In 1918 an influenza virus emerged — probably in the United
States — that would spread around the world.... Before that world-wide pandemic faded
away in 1920, it would kill more people than any other outbreak in human history.... The
lowest estimate of the pandemic’s worldwide death toll is twenty-one million, in a world
with a population less than one-third today’s.... Epidemiologists today estimate that
influenza likely caused at least fifty million deaths worldwide, and possible as many as one
hundred million.... And they died with extraordinary ferocity and speed. Although the
influenza pandemic stretched over two years, perhaps two-thirds of the deaths occurred in
a period of twenty-four weeks, and more than half of those deaths occurred in even less
(continued...)
Prevention (CDC), stated in congressional testimony that “medical surge capacity is
limited, and could be vastly outpaced by demand.”3
In a House hearing, Dr. Tara O’Toole, the chief executive officer and director
of the Center for Biosecurity at the University of Pittsburgh Medical Center, noted
that CDC has created a computer model that allows each hospital to calculate how
much surge capacity would be needed if a human influenza pandemic similar to that
of 1918 were to occur. As an example, Dr. O’Toole calculated the data for the
Atlanta area and provided the following description for those hospitals.
For example, in a 1918 type pandemic, in the Atlanta metro area, that region
would require 300% of its current (pre-epidemic) hospital bed capacity to care
for flu patients (and the necessary clinical staff to care for this increase in
patients); 700% of Atlanta’s pre-epidemic Intensive Care Unit capacity and
nearly four times as many ventilators to care just for the flu patients. These
demands do not take into account the resources that would be required to meet4
normal ongoing critical medical needs (care of heart attack victims, etc.).
Similarly, although efforts are underway to develop vaccines and stockpile
antiviral drugs, it is unlikely that there would be sufficient quantities of these
medications for all who might seek them during a pandemic.5 HHS has noted that
it will be six months after the start of a pandemic before current technology will
allow development of a well-matched vaccine.6 In an effort to address this six-month
2 (...continued)
time, from mid-September to early December 1918.” At 4-5.
3 Avian Influenza: Hearing Before the Subcommittee on Foreign Operations, Export
Financing and Related Programs of the House Appropriations Committee, 109th Cong., 2d
Sess. (March 2, 2006), Testimony of Dr. Julie L. Gerberding, Director, Centers for Disease
Control and Prevention, U.S. Department of Health and Human Services, reprinted at
[http://www.hhs.gov/as l/testify/t 060302b.html ].
4 Pandemic Flu: Joint Hearing Before the Prevention of Nuclear and Biological Attack and
Emergency Preparedness, Science and Technology Subcommittees of the House Homelandth
Security Committee,109 Cong., 2d Sess. (February 8, 2006), Testimony of Dr. Tara
O’Toole. Even with a moderate epidemic, the CDC has estimated an increase in
hospitalization and intensive care unit demand of more than 25%. See HHS Pandemic
Influenza Plan, Appendix D, [http://www.hhs.gov/pandemicflu/plan/appendixd.html].
5 See Department of Health and Human Services (HHS), Pandemic Planning Update (March
13, 2006); Lawrence O. Gostin, “Medical Countermeasures for Pandemic Influenza: Ethics
and the Law,” 295 JAMA 554 (February 1, 2006). Information from WHO has projected
that the potential supply of pandemic influenza vaccine has sharply increased due to recent
scientific advances and increased vaccine manufacturing capacity. “Last spring, the World
Health Organization (WHO) and vaccine manufacturers said that about 100 million courses
of pandemic influenza vaccine based on the H5N1 avian influenza strain could be produced
immediately with standard technology. Experts now anticipate that global production
capacity will rise to 4.5 billion pandemic immunization courses per year in 2010.”
“Projected Supply of Pandemic Influenza Vaccine Sharply Increases,” [http://www.who.int/
mediacentre/news/releases/2007/pr60/en/index.html ].
6 Department of Health and Human Services (HHS), Pandemic Planning Update IV at 7
(continued...)
period, the United States has, as of the end of 2007, stockpiled approximately 13
million doses of a pre-pandemic vaccine, with the expectation that this vaccine will
provide at least partial protection against new virus strains.7 To provide maximum
protection, however, a vaccine must be developed from the virus that is causing a
pandemic, and the specific virus would not be known until there is a pandemic.
Matched vaccine supplies will be limited or nonexistent at the start of a pandemic.8
Antiviral drugs would also be in short supply during a pandemic. The United
States is working toward a goal of stockpiling 81 million treatment doses, both
federal and state.9 Currently, approximately 50 million antiviral treatment courses
have been stockpiled.10 However, since viruses can develop resistence to current
antiviral drugs, HHS has awarded $103 million to develop a new influenza antiviral
drug. 11
In situations such as bioterrorism or pandemic influenza, where resources are
limited, issues concerning altered standards of care may arise. The allocation of
scarce medical resources would be part of this broader issue.12 One discussion of the
overall issue of altered standards of care noted that “under normal conditions, current
standards of care might be interpreted as calling for the allocation of all appropriate
health and medical resources to improve the health status and/or save the life of each
individual patient. However, should a mass casualty event occur, the demand for
care provided in accordance with current standards would exceed system
resources.”13 This report also notes that “altered standards” is not defined but
“generally is assumed to mean a shift to providing care and allocating scarce
6 (...continued)
(July 18, 2007) [http://www.pandemicflu.gov/plan/panflureport4.html].
7 Department of Health and Human Services (HHS), Pandemic Planning Update V (March
8 World Health Organization, “WHO Guidelines on the Use of Vaccines and Antiviral
During Influenza Pandemics,” (2004) [http://www.who.int/csr/resources/publications/
influenza/WHO_CDS_CS R_RMD_2004_8/en/index.html ].
9 Department of Health and Human Services (HHS), Pandemic Planning Update IV at 9
(July 18, 2007) [http://www.pandemicflu.gov/plan/panflureport4.html].
10 Department of Health and Human Services (HHS), Pandemic Planning Update V (March
11 Department of Health and Human Services (HHS), Pandemic Planning Update IV at 9
(July 18, 2007) [http://www.pandemicflu.gov/plan/panflureport4.html].
12 In addition to short supplies of vaccines and antivirals, many hospitals and emergency
rooms are currently operating either at or over capacity with little surge capacity for a large
influx of additional patients. A report by the Institute of Medicine noted that in many cities
hospitals and trauma centers have problems dealing with multiple car highway crashes and
concluded that “the lack of adequate hospital surge capacity is a serious and neglected
element of current disaster preparedness efforts.” See Institute of Medicine, Hospital-Based
Emergency Care: At the Breaking Point 206-207 (June 14, 2006).
13 Health Systems Resources, “Altered Standards of Care in Mass Casualty Events,” 8
(April 8, 2005), prepared for the Department of Health and Human Services, printed at
[ h t t p : / / www.ahr q.gov/ r esear c h/ al t s t a nd/ al t s t a nd.pdf ] .
equipment, supplies, and personnel in a way that saves the largest number of lives in
contrast to the traditional focus on saving individuals.”14 This could mean applying
principles of triage, the process of sorting victims according to their need for
treatment and the resources available.
Federal Pandemic Influenza Plan and
Selected Allocation Proposals
National Strategy and Implementation Plan
for Pandemic Influenza
National Strategy for Pandemic Influenza. On November 1, 2005,
President Bush issued the National Strategy for Pandemic Influenza. The national
strategy is a guide to preparedness and response to an influenza pandemic and
provides a framework for federal government planning for an influenza pandemic.15
The goals of the national strategy are “(1) stopping, slowing or otherwise limiting the
spread of a pandemic to the United States; (2) limiting the domestic spread of a
pandemic, and mitigating disease, suffering and death; and (3) sustaining
infrastructure and mitigating impact to the economy and the functioning of society.”
The National Strategy also emphasizes the need to establish priorities for the
allocation of vaccines and antivirals prior to the outbreak of a pandemic. These
priorities would be updated immediately after the outbreak begins, based on the
at-risk populations, available supplies, and the characteristics of the virus.16
National Strategy for Pandemic Influenza Implementation Plan. In
May 2006, the Homeland Security Council issued the implementation plan for the
National Strategy. This plan is described as “a comprehensive effort by the Federal
Government to identify the critical steps that must be taken immediately and over the17
coming months and years to address the threat of an influenza pandemic.”
In its chapter on protecting human health, the implementation plan discusses
priorities for scarce resources and notes that federal guidelines are being developed.
These guidelines are to reflect the goals of the national strategy, as noted above. The
14 Id.
15 It should be noted that states and localities are generally responsible for public health
emergency response. For a discussion of state pandemic plans that are required as a
condition of federal funding for pandemic preparedness, see CRS Report RL34190,
Pandemic Influenza: An Analysis of State Preparedness and Response Plans, by Sarah A.
Lister and Holly Stockdale.
16 National Strategy for Pandemic Influenza, November 1, 2005, at [http://www.whitehouse.
gov/homeland/pandemic-influenza.html]. The National Strategy is to be consistent with The
National Security Strategy and the National Strategy for Homeland Security.
17 Homeland Security Council, National Strategy for Pandemic Influenza Implementation
Plan, viii (May 2006). See also National Strategy for Pandemic Influenza Implementation
Plan One Year Summary(July 17, 2007) [http://www.whitehouse.gov/homeland/
pandemi c-influenza-oneyear.html ].
implementation plan noted that priorities for vaccines and antiviral drugs will vary
depending on the severity of the pandemic and the supply of vaccines and antiviral
medications. For example, if supplies of vaccine and antiviral drugs are limited,
vaccine may be reserved for personnel who maintain critical infrastructure and health
care providers. The implementation plan further notes that the recommendations that
are included in the HHS Pandemic Influenza Plan, discussed infra, provide initial
guidance regarding the potential target groups being considered.
The implementation plan discusses medical standards of care and observes that
“[i]f a pandemic overwhelms the health and medical capacity of a community, it will
be impossible to provide the level of medical care that would be expected under pre-
pandemic circumstances.”18 The plan also notes that approaches to medical care
would change.
In a pandemic, hospital and ICU beds, ventilators, and other medical services
may be rationed. As in other situations of scarce medical resources, preference
will be given to those whose medical condition suggests that they will obtain the
greatest benefit from them. Such rationing differs from approaches to care in
which resources are provided on a first-come, first-served bases or to patients19
with the most severe illnesses or injuries.
HHS 2005 Recommendations Regarding Prioritization
The Department of Health and Human Services (HHS) issued a pandemic
influenza plan in November 2005 that provides initial guidance for HHS pandemic
influenza preparedness planning and response and offers detailed guidance to states20
and localities for their planning and response. The executive summary of the plan
notes that “an influenza pandemic has the potential to cause more death and illness
than any other public health threat” and that “it is unlikely that there will be sufficient
personnel, equipment, and supplies.”21 The plan also emphasizes that influenza
preparedness is a “shared responsibility” between the federal, state, and local
governments.22
18 Id. at 110.
19 Id.
20 HHS Pandemic Flu Plan [http://www.hhs.gov/pandemicflu/plan/overview.html]. The
ethical issues regarding allocation of medical resources are beyond the scope of this report.
For a discussion of these issues, see CRS Report RL32655, Influenza Vaccine Shortages
and Implications, by Sarah A. Lister and Erin D. Williams. Similarly, quarantine and
isolation issues are also beyond the scope of this report. See CRS Report RL33201, Federal
and State Quarantine and Isolation Authority, by Kathleen S. Swendiman and Jennifer K.
Elsea, and CRS Report RL33609, Quarantine and Isolation: Selected Legal Issues Relating
to Employment, by Nancy Lee Jones and Jon O. Shimabukuro.
21 Id.
22 Id. For a discussion of how this shared responsibility might work, see “Enhancing Public
Health and Medical Preparedness: Reauthorization of Public Health Security and
Bioterrorism Preparedness and Response Act,” Hearing before the Senate Committee onth
Health, Education, Labor and Pensions, 109 Congress, 2d Sess. (March 16, 2006),
(continued...)
Appendix D of the HHS pandemic influenza plan contains recommendations
regarding prioritization of pandemic influenza vaccine and antiviral drugs and
includes the rationale for the prioritization. The first priority individuals for vaccines
would be those involved in vaccine and antiviral manufacturing and medical workers,
because they would be needed to assure maximum production of vaccine and
antiviral drugs and to provide medical care. The second group would be individuals
at high risk of hospitalization and death, excluding the elderly in nursing homes and
those who are immunocompromised, because they would not be expected to respond
well to vaccination. The recommendations also rank various other groups. Healthy
children do not receive priority under these recommendations.
The recommendations for priority treatment differ for antiviral drug use. The
first priority group to receive antiviral drugs would be patients admitted to the
hospital due to severe influenza illness; the second priority group would be health-
care workers. The next tier would include influenza patients at greatest risk of
hospitalization and death, including immunocompromised persons and pregnant
women. After this group would be pandemic health responders, including vaccine
and antiviral manufacturers, police, fire fighters, corrections officials, and
government decision makers. The recommendations also rank various other
groups.23 The individuals in these groups may receive antiviral drugs for treatment
or, in some cases, as a preventative measure.
Interagency Working Group Guidance on Allocating
and Targeting Pandemic Influenza Vaccine
On July 23, 2008, HHS and the Department of Homeland Security (DHS) issued
a report entitled “Guidance on Allocating and Targeting Pandemic Influenza24
Vaccine.” On December 14, 2006, HHS had issued a request for information (RFI)
in the Federal Register asking for “input on pandemic influenza vaccine25
prioritization considerations from all interested and affected parties....” In addition,
the request for information indicated that limiting transmission may be an objective.
The Homeland Security Council Implementation Plan requires HHS with the
Department of Homeland Security (DHS) to make priority recommendations for
access to pre-pandemic and pandemic influenza vaccines. The recommendations are
to reflect the pandemic response goals that were described in the Implementation26
Plan, as well as maintaining national security.
22 (...continued)
Testimony of Richard A. Falkenrath.
23 See HHS Pandemic Influenza Plan, Appendix D [http://www.hhs.gov/pandemicflu/plan/
appendixd.html ].
24 U.S. Department of Health and Human Services, U.S. Department of Homeland Security,
“Guidance on Allocating and Targeting Pandemic Influenza Vaccine,” (July 23, 2008)
[http://www.hhs.gov/news/pr ess/2008pres/07/20080723a.html ].
25 71 Fed.Reg. 75252 (December 14, 2006).
26 These goals are “(1) stopping, slowing or otherwise limiting the spread of a pandemic to
the United States; (2) limiting the domestic spread of a pandemic, and mitigating disease,
(continued...)
The federal interagency working group used the input gained from this RFI and
issued draft guidance on October 17, 2007.27 After consideration of comments, final
guidance was issued on July 23, 2008.28 The guidance for pandemic vaccine differs
markedly from the HHS 2005 recommendations. Although both schemes would give
priority to health care workers and vaccine manufacturers, the 2005
recommendations largely emphasize treatment for the most vulnerable populations,
the sick and elderly, while the guidance would give lower priority to these groups.
The guidance creates tiers for coverage, and varies the vaccination priority depending
on the severity of the pandemic. Since pandemics that have higher case fatality rates
are more likely to disrupt essential services, threaten public order and homeland
security, and disrupt supply chains, individuals who are necessary for these functions
would receive a higher priority in a severe pandemic. Conversely, individuals with
high risk conditions making them more vulnerable to serious illness would receive
greater priority in a less severe pandemic.29
The guidance gives its highest rank to deployed forces, critical health-care
workers, fire and police, and pregnant women, infants, and toddlers. The importance
of maintaining homeland and national security is highlighted and the guidance
recognizes the following objectives as the most important:
!protecting those who are essential to the pandemic response and
providing care for persons who are ill,
!protecting those who maintain essential community services,
!protecting children, and
!protecting workers who are at greater risk of infection due to their
job.30
26 (...continued)
suffering and death; and (3) sustaining infrastructure and mitigating impact to the economy
and the functioning of society.” National Strategy for Pandemic Influenza, November 1,
27 “Draft Guidance on Allocating and Targeting Pandemic Influenza Vaccine,”
[http://www.pandemi cflu.gov/vaccine/prioritization.html ].
28 U.S. Department of Health and Human Services, U.S. Department of Homeland Security,
“Guidance on Allocating and Targeting Pandemic Influenza Vaccine,” (July 23, 2008)
[http://www.hhs.gov/news/pr ess/2008pres/07/20080723a.html ].
29 Id. at 10-11.
30 Id. at 3.
Figure 1. Vaccination Tiers and Target Groups for a Severe Pandemic
Source: U.S. Department of Health and Human Services, U.S. Department of Homeland
Security, “Guidance on Allocating and Targeting Pandemic Influenza Vaccine,” (July 23,
Other Allocation Proposals
Other proposals also have been made for the allocation of scarce medical
resources.31 The World Health Organization (WHO) has suggested, as planning
guidance, providing vaccines to “essential service providers, including health care
workers” and groups at high risk of death and severe complications.32
In addition, other individuals have advanced allocation proposals in journal
articles. For example, two emergency medicine physicians have proposed criteria
for ventilatory support administration and for withdrawal of ventilatory support. The
first tier for not offering and withdrawing ventilatory support under this proposal
31 For a more detailed discussion of various proposals, see CRS Report RL32655, Influenza
Vaccine Shortages and Implications, by Sarah A. Lister and Erin D. Williams. It should be
noted that other countries use other ranking systems. For example, the Canadian plan would
rank healthy children below healthy adults, whereas the 2005 HHS plan would group
healthy adults and children together. The Canadian plan may be found at [http://www.phac-
aspc.gc.ca/cpip-pclcpi/index.html ].
32 World Health Organization, “WHO Guidelines on the Use of Vaccines and Antiviral
during Influenza Pandemics,” [http://www.who.int/csr/resources/publications/influenza/
WHO_CDS_CSR_RMD _2004_8/en/index.html ].
would include individuals with persistent hypotension unresponsive to adequate fluid
resuscitation and signs of additional end-organ dysfunction. This proposal has as its
second tier for receiving no services patients with various preexisting conditions,
such as acute renal failure requiring hemodialysis and AIDS.33 Another group of
commentators has explored the issues relating to “reverse triage,” that is, discharging
certain patients from hospitals to create room for other patients.34
Other commentators have argued for a “life-cycle allocation principle,” rejecting
other commonly used ethical principles for allocation such as “save the most lives,”
and “first come, first served.” 35 Their theory would give priority to individuals from
early adolescence to middle age “on the basis of the amount the person (has) invested
in his or her life balanced by the amount left to live.”36
A September 2008 article took a slightly different approach and argued for
priorities to be based on essential functions for society.37 The commentators argued
that the secondary consequences of a severe pandemic, such as threats to
infrastucture including water and food supplies, necessitate priority access to
vaccinations and other treatment for a diverse group of individuals and businesses.
Some, but not all, health care workers would continue to receive priority treatment.
The need for households and businesses to prepare for self-sufficiency was
emphasized and the commentators concluded that “[m]ultiple measures to keep key
functions, agencies, and households ever skeletally functional during a pandemic
33 John L. Hick, MD and Daniel T. O’Laughlin, MD, “Concept of Operations for Triage of
Mechanical Ventilation in an Epidemic,” 13 ACADEMIC EMERGENCY MEDICINE 223
(February 2006). For an analysis and criticism of this article and a discussion of an
“evidence-based standard of care,” see Kriti L. Koenig, David C. Cone, Jonathan L.
Burstein, and Carlos A. Camego, Jr., “Surging to the Right Standard of Care,” 13 ACADEMIC
EMERGENCY MEDICINE 195 (February 2006). See also Lawrence O. Gostin, “Medical
Countermeasures for the Pandemic Influenza: Ethics and the Law,” 295 JAMA 554
(February 1, 2006).
34 Chadd K. Kraus, Frederick Levy, and Gabor Kelen, “Lifeboat Ethics: Considerations in
the Discharge of Inpatients for the Creation of Hospital Surge Capacity,” 1 DISASTER
MEDICINE AND PUBLIC HEALTH PREPAREDNESS 51 (July 2007).
35 Ezekiel J. Emanuel and Alan Wertheimer, “Who Should Get Influenza Vaccine When
Not All Can?” 312 SCIENCE 854 (May 12, 2006).
36 Id. at 855. Several organizations, including the Institute of Medicine and the National
Vaccine Program Office in the Department of Health and Human Services, sponsored a
public engagement pilot project on pandemic influenza (PEPPPI) to discuss and rank goals
for a pandemic influenza vaccination program and to test a model for engaging citizens on
vaccine related policy decisions. The report of these groups concluded that assuring the
functioning of society should be the first immunization goal followed by reducing individual
deaths and hospitalizations. There was little support among this group for vaccinating
younger people first. See “Citizens Voices on Pandemic Flu Choices: A Report of the
Public Engagement Pilot Project on Pandemic Influenza” (December 2005).
37 Nancy E. Kass, Jean Otto, Daniel O’Brien and Matthew Minson, “Ethics and Severe
Pandemic Influenza: Maintaining Essential Functions Through a Fair and Considered
Response,” 6.3 BIOSECURITY AND BIOTERRORISM: BIODEFENSE STRATEGY, PRACTICE, AND
SCIENCE 227 (Sept. 2008).
allow us to be less susceptible to the secondary consequences of pandemic influenza,
allow us to better attend to those most vulnerable, and allow us to increase the chance
that, when pandemic waves pass, there will be a society to which we can all return.”38
The Infectious Diseases Society of America (IDSA) issued a report in January
2007 containing principles for action during an influenza pandemic and specific
recommendations.39 IDSA emphasized the need for guidance concerning priorities
for vaccines and observed that “[t]he U.S. must preserve medical readiness by
ensuring that health care workers, including physicians, nurses, pharmacist, allied
health personnel, first responders, and others are able to perform their duties during
an influenza pandemic.”40 In its response to the HHS request for information on
vaccine prioritization, IDSA noted that the principle served by the priorities should
be “mitigation of suffering and death while sustaining the functioning of society.”41
The exact implementation of this principle would depend upon the particular
epidemiological characteristics of a pandemic. For example, a pandemic that caused
high death rates among children but not adults would necessitate different priorities.
Generally, IDSA noted the importance of critical infrastructure personnel and key
health care providers. However, the comments also noted that “a scheme that
incorporates consideration of years of life lost, or years of quality life lost should be
considered” and that the life-cycle proposal of Ezekiel Emanuel and Alan
Wertheimer, which was discussed previously, was a “good starting point.”
The New York State Department of Health issued a draft plan on March 15,
2007, for determinating who would receive ventilator treatment during a pandemic
where there is a shortage of ventilators.42 The draft plan would apply to all patients
in acute care hospitals in the state without regard for age, occupation, or role in the
community, and would be applicable only as a last resort after hospitals had canceled
elective medical procedures. The plan did not list specific diseases or age as
exclusion criteria but focused on functionality, using a sequential organ failure
assessment score. There would be no priority for health care workers or first
responders. The proposal also addresses legal issues, noting that the document, when
finalized, would provide strong evidence regarding an acceptable standard of care.
The New York State Department of Health is seeking comments on the draft plan.
Although a detailed analysis of the plans of various countries is beyond the
scope of this report, it should be noted that different countries approach priorities for
vaccines and other medical supplies in various ways. A 2006 analysis of pandemic
plans from forty-five countries found marked variability in proposed vaccine priority
schemes, in particular with respect to the priority ranking assigned to children.43
38 Id.
39 [http://www.idsociety.org/WorkArea/showcontent.aspx?id=5728].
40 Id. at 15.
41 [http://www.idsociety.org/WorkArea/showcontent.aspx?id=5728].
42 [http://www.health.state.ny.us/press/releases/2007/2007-08-23_vent_comments.htm].
43 L. Uscher-Pines et al., “Priority Setting for Pandemic Influenza: An Analysis of National
(continued...)
The Americans with Disabilities Act and
Section 504 of the Rehabilitation Act
Overview
The Americans with Disabilities Act (ADA)44 has often been described as the
most sweeping nondiscrimination legislation since the Civil Rights Act of 1964. It
provides broad nondiscrimination protection in employment, public services, public
accommodation and services operated by private entities, transportation, and
telecommunications for individuals with disabilities. Congress found that individuals
with disabilities continually encounter various forms of discrimination, often
resulting from “stereotypic assumptions not truly indicative of the individual ability
of such individuals to participate in, and contribute to, society.”45 As stated in the
act, the ADA’s purpose is “to provide a clear and comprehensive national mandate
for the elimination of discrimination against individuals with disabilities.”46
Title II of the ADA prohibits discrimination by state and local governments,
whereas Title III of the ADA prohibits discrimination by places of public
accommodation, which are defined to include hospitals or offices of a health-care47
provider. Many of the concepts used in the ADA originated in Section 504 of the
Rehabilitation Act of 197348 and its interpretations, and the two statutes are generally
interpreted in the same manner, although their areas of coverage differ somewhat.
Section 504 prohibits discrimination against individuals with disabilities in any
program or activity receiving federal financial assistance, in the executive branch, or
the U.S. Postal Service; the ADA covers the private sector and state and local
governments.
Although the ADA does not specifically mention coverage of disasters, its
provisions are broad and would provide nondiscrimination protection for emergency
situations. The Department of Justice has observed that “one of the most important
roles of local government is to protect their citizenry from harm, including helping
people prepare for and respond to emergencies. Making local government emergency
preparedness and response programs accessible to people with disabilities is a critical
43 (...continued)
Preparedness Plans,” PLoS Medicine, vol. 3, no. 10, October 17, 2006.
44 42 U.S.C. §§12101 et seq. For a more detailed discussion of the ADA, see CRS Report
by Nancy Lee Jones.
45 42 U.S.C. §12101(7).
46 42 U.S.C. §12101(b)(1).
47 42 U.S.C. §12181(7).
48 29 U.S.C. §794.
part of this responsibility. Making these programs accessible is also required by the
ADA.”49
The Department of Justice has issued an ADA guide for local governments
regarding making community emergency preparedness and response programs
accessible to people with disabilities.50 This guide includes planning for individuals
who use oxygen or respirators or who have need for medications; however, the guide
is focused on disasters that occur during a short period of time and in a specific
location, such as a terrorist attack or hurricane, rather than on an influenza pandemic,
which could last more than a year and span the world. Despite this focus, the ADA
would appear to require planning undertaken regarding a potential influenza
pandemic to including planning for individuals with disabilities.
Definition of Disability
The starting point for an analysis of rights provided by the ADA or Section 504
is whether an individual is an individual with a disability. The ADA and Section 504
definitions of disability were amended by the ADA Amendments Act, P.L. 110-325
to broaden the definition of disability from that provided by Supreme Court
interpretations.51 The ADA Amendments Act defines the term disability with respect
to an individual as “(A) a physical or mental impairment that substantially limits one
or more of the major life activities of such individual; (B) a record of such an
impairment; or (C) being regarded as having such an impairment (as described in
paragraph (3)).”52 Although this is essentially the same statutory language as was
in the original ADA, P.L. 110-325 contains new rules of construction regarding the
definition of disability which provide that
!the definition of disability shall be construed in favor of broad
coverage to the maximum extent permitted by the terms of the act;
!the term “substantially limits” shall be interpreted consistently with
the findings and purposes of the ADA Amendments Act;
!an impairment that substantially limits one major life activity need
not limit other major life activities to be considered a disability;
!an impairment that is episodic or in remission is a disability if it
would have substantially limited a major life activity when active;
!the determination of whether an impairment substantially limits a
major life activity shall be made without regard to the ameliorative
49 [http://www.usdoj.gov/crt/ada/emergencyprep.htm]. This requirement would be under
Title II of the ADA, which covers state and local governments. For a discussion of
emergency preparedness under the ADA, see CRS Report RS22254, The Americans with
Disabilities Act and Emergency Preparedness and Response, by Nancy Lee Jones.
50 Id.
51 For a detailed discussion of the amendments see CRS Report RL34691, The ADA
Amendments Act: P.L. 110-325, by Nancy Lee Jones.
52 P.L. 110-325, §4(a), amending 42 U.S.C. §12102(3).
effects of mitigating measures, except that the ameliorative effects
of ordinary eyeglasses or contact lenses shall be considered.53
The most likely discrimination issue that would arise under the ADA or Section
504 during an influenza pandemic would be whether an existing disability, such as
visual impairment, affects the provision of medical services to an individual.
However, there could also be situations where infection with the pandemic influenza
virus could raise issues under these statutes. Individuals with serious contagious
diseases, such as pandemic influenza, would most likely be considered individuals
with disabilities,54 although the nondiscrimination mandates are not applicable if an
individual is a direct threat to the health or safety of others.55 Thus, even if an
individual infected with a pandemic influenza virus was determined to be an
individual with a disability, a physician or other health-care provider may not be
required to treat that individual if doing so would create a direct threat to the health
of the provider.56
Application of the ADA and Section 504 to
the Allocation of Scarce Medical Resources
Introduction. Title II of the ADA prohibits discrimination by state and local
governments, whereas Title III of the ADA prohibits discrimination by places of
public accommodation, including hospitals or offices of a health-care provider.57
Section 504 prohibits discrimination against individuals with disabilities in any
program or activity receiving federal financial assistance, in the executive branch, or
in the U.S. Postal Service.58 If a state or locality provides a service, a “qualified
individual with a disability” may not be denied the benefits of the service or be
subject to discrimination.59 “Qualified individual with a disability” is defined for the
purposes of Title II of the ADA as “an individual with a disability who, with or
without reasonable modifications to rules, policies, or practices, the removal of
architectural, communication or transportation barriers, or the provision of auxiliary
aids and services, meets the essential eligibility requirements for the receipt of
53 Low vision devices are not included in the ordinary eyeglasses and contact lens exception.
54 See Bragdon v. Abbott, 524 U.S. 624 (1998), where the Supreme Court found that an
HIV-infected individual was covered by the ADA, and School Board of Nassau County v.
Arline, 480 U.S. 273 (1987), where the Supreme Court found that an individual with
tuberculosis was covered under Section 504.
55 For a more detailed discussion of this issue, see CRS Report RS22219, The Americans
with Disabilities Act (ADA)Coverage of Contagious Diseases, by Nancy Lee Jones.
56 Bragdon v. Abbott, 524 U.S. 624 (1998). In Bragdon, although the HIV-infected
individual was found to be an individual with a disability, and thus covered under the ADA,
the direct threat exemption was discussed and the case was remanded for consideration of
whether filling the cavity of an HIV-infected individual would create a direct threat of
transmission.
57 42 U.S.C. §12181(7).
58 29 U.S.C. §794.
59 28 C.F.R. §35.130 (ADA regulations); 45 C.F.R. 84.4 (Section 504 regulations).
services or the participation in programs or activities provided by a public entity.”60
The Section 504 regulations define the term “qualified handicapped person” as
meaning in relevant part “a handicapped person who meets the essential eligibility
requirements for the receipt of such services.”61
There has been no situation directly analogous to one that might be posed by
allocation issues regarding medical resources during an influenza pandemic, but
some situations have arisen that may be instructive. These include situations
involving individual medical treatment decisions, the reduction of the number of
inpatient hospital days paid for by Medicaid, allocating health-care services under
Medicaid in a proposed Oregon Medicaid waiver, and organ transplant allocation
policies.
Individual Medical Treatment Decisions. The ADA and Section 504 of
the Rehabilitation Act of 1973 have been found not to apply to individual medical
treatment decisions.62 In other words, a physician’s medical judgment concerning
treatment will be given deference and generally will not trigger discrimination issues.
The requirement that an individual with a disability be qualified has been seen by at
least one court to be “geared toward relatively static programs or activities such as
education” and thus is unable to be applied in “the comparatively fluid context of63
medical treatment.” When the disability is related to the condition to be treated,
courts have found that “it will rarely, if ever, be possible to say ... that a particular64
decision was ‘discriminatory.’” However, in one district court case, Section 504
was found to require the provision of medical treatment to an anencephalic infant,
despite the advice of physicians and the hospital’s ethics committee recommending
that the child not be resuscitated.65
Alexander v. Choate. Questions have also been raised regarding the
application of Section 504 and the ADA to the application of policies regarding
60 42 U.S.C. §12131(2).
61 45 C.F.R. §84.3(l)(4).
62 Burger v. Bloomberg, 418 F.3d 882 (8th Cir. 2005)(“... a lawsuit under the Rehab Act or
the Americans with Disabilities Act (ADA) cannot be based on medical treatmentth
decisions.”); Schiavo ex rel. Schindler v. Schiavo, 403 F.3d 1289, 1294 (11 Cir. 2005);th
Fitzgerald v. Corr. Corp. of America, 403 F.3d 1134, 1144 (10 Cir. 2005); Wilson v.
Woodford, 2006 U.S. Dist. LEXIS 12330 (E.D. Calif. March 23, 2006)(“The treatment, or
lack of treatment, concerning Plaintiff’s medical condition does not provide a basis upon
which to impose liability under the RA or ADA.”)
63 United States v. University Hospital, 729 F.2d. 144, 156 (2d Cir. 1984).
64 United States v. University Hospital, 729 F.2d. 144, 157 (2d Cir. 1984), discussing the
application of Section 504 to the treatment of a newborn with multiple physical and mental
disabilities. Several cases alleging violations of Section 504 were brought on behalf of
infants with disabilities in the 1980s. For a detailed discussion of this issue, see Bonnie P.
Tucker and Bruce A. Goldstein, Legal Rights of Persons with Disabilities: An Analysis of
Federal Law §20 (1992).
65 In the Matter of Baby K, 832 F.Supp. 1022 (E.D. Va. 1993), aff’d on other grounds, 16
F.3d 590 (4th Cir. 1994).
medical resources. In Alexander v. Choate,66 the Supreme Court grappled with the
issue of whether a reduction of the number of inpatient hospital days paid for by
Medicaid would violate Section 504. This reduction would have a disparate impact
on individuals with disabilities, but this alone was not seen as sufficient to violate the
nondiscrimination requirements. Upholding Tennessee’s 14-day limitation, the
Supreme Court stated:
Section 504 does not require the State to alter this definition of the benefit being
offered simply to meet the reality that the handicapped have greater medical
needs.... Section 504 seeks to assure even-handed treatment and the opportunity
for handicapped individuals who participate in and benefit from programs
receiving federal assistance... The Act does not, however, guarantee the
handicapped equal results from the provision of state Medicaid, even assuming67
some measure of equality of health could be constructed.
Oregon Medicaid Waiver Proposals. Similar issues were raised in the
early 1990s by the state of Oregon Medicaid waiver proposal, which attempted to set68
priorities for allocating health-care services. The methodology used to set the
priorities for the ranking in the Oregon plan involved data supplied by health-care
providers (e.g., the likelihood of recovery from certain diseases or conditions) and
“values” contributed by the general public through public hearings and community
meetings, in a telephone survey, and by the Oregon commissioners. The values were
given weight based on three attributes: value to society, value to an individual
needing the services, and whether it was essential to a basic health-care package. The
value to an individual included an element described as “quality of life,” which was
quantified largely through a telephone survey in which the respondents scored the
severity of certain symptoms or functional impairments on a scale of 1 to 100, with
0 representing death and 100 representing perfect health. The survey did not reach
this was due to various factors, including “deaf/language barrier.” The U.S.
Department of Health and Human Services (HHS) denied the waiver application70
based on conflicts with the ADA, especially the “quality of life” components. One
commentator noted that this decision made “a legitimate point of fundamental
difficulty in any rationing scheme that gives quality of life measurement a significant
role.”71
Organ Transplant Policies. The intersection of the ADA and organ
allocation policies is another similar issue. The Public Health Service Act provisions
66 469 U.S. 287 (1985).
67 Id. at 303-304.
68 For a detailed discussion of this proposal, see Office of Technology Assessment,
“Evaluation of the Oregon Medicaid Proposal,” OTA-H-531 (May 1992).
69 Oregon Health Services Commission, PRIORITIZATION OF HEALTH SERVICES C-2 (1991).
70 See Paul T. Menzel, “Oregon’s Denial: Disabilities and Quality of Life,” 22 THE
HASTINGS CENTER REPORT 21 (November/December 1992).
71 Id. See also David Orentlicher, “Rationing and the Americans With Disabilities Act,”
relating to organ procurement and transplantation72 require the Secretary of HHS to
contract with a private, nonprofit corporation to establish and operate the Organ
Procurement and Transplantation Network (OPTN). In 1986, the United Network
for Organ Sharing (UNOS) was awarded a federal contract to administer the OPTN,
whose primary function is to maintain a national computerized list of potential
recipients and a system that matches donors and recipients.73
In McElroy v. Patient Selection Committee,74 the plaintiff alleged a violation of
Title III of the ADA when the hospital refused to provide kidney transplant services
due to the plaintiff’s mental illness. The district court found no ADA violation and
granted summary judgment for the hospital since the evidence showed that the
rejection of the plaintiff’s application for a kidney transplant was for medical reasons.
The doctor who evaluated the plaintiff on behalf of the hospital’s patient selection
committee had testified that the transplant procedure “is complex and intrusive and
requires long-standing adherence to immuno-suppressive agents and cooperation
with the various different people who treat a patient.... Adherence to immuno-
suppressive agents and cooperation with his medical team is highly doubtful in light
of his history and his chronic psychotic illness for which he has yet to establish
complete and autonomous control.”
Another transplant situation raised potential ADA issues, but did not give rise
to litigation. Sandra Jensen was an individual with Down Syndrome who needed a
heart-lung transplant. Surgeons at two hospitals initially rejected her for the
procedure claiming that she lacked the mental capacity to participate in her care.
However, pressure from community members and advocacy groups led the hospitals
to reconsider and, after further examination, Stanford University surgeons determined
that they had misjudged Ms. Jensen’s ability to comprehend her condition and handle
her care, and performed the surgery.75
Application. How, then, could these ADA and Section 504 precedents be
applied to proposed priorities for the allocation of scarce medical resources when the
scenarios that arise from a possible influenza pandemic are imposed on modern
society? First, it should be noted that there are numerous ways in which allocation
priorities could be made and that these priorities vary depending on, for example,
whether the situation involves the distribution of vaccine or the provision of antiviral
medications or the use of ventilators. In addition, the HHS pandemic influenza plan
recommendations for priorities emphasize that the recommendations were based on
certain critical assumptions that might change.76 Similarly, the guidance issued by
72 42 U.S.C. §§273 et seq.
73 For a more detailed discussion of this system, see CRS Report RL30109, Medicare and
Medicaid Organ Transplants, by Sibyl Tilson, available upon request.
74 2007 U.S.Dist.LEXIS 86321 (D. Neb. Nov. 21, 2007).
75 For a more detailed discussion of this situation and an argument for the application of the
ADA, see Angela T. Whitehead, “Rejecting Organs: The Organ Allocation Process and the
Americans with Disabilities,” 24 AMERICAN J. OF LAW AND MEDICINE 481 (1998).
76 The assumptions for the vaccine prioritization recommendation were (1) that the greatest
(continued...)
HHS and DHA on allocating and targeting pandemic influenza vaccine contains a
number of variables depending on the severity of a pandemic and the vulnerability
of various groups. This analysis, therefore, will be general in nature.
Exactly how the ADA or Section 504 will affect priorities for the allocation of
scarce medical resources is uncertain. No event comparable to the scenarios
projected by a pandemic influenza, such as the one of 1918, has occurred since the
enactment of the ADA or Section 504, although other national disasters have
happened, such as the terrorist attacks on 9/11 and the devastation of hurricanes
Katrina, Rita, and Wilma.77 These disasters have highlighted the difficulty of
providing medical equipment and supplies to individuals with disabilities, including
homebound individuals, and the importance of planning.78 However, they do not
provide much guidance on how scarce medical resources are to be allocated.
It should be reiterated that Title II of the ADA would apply to policies
implemented by states and localities and that ADA Title III would apply to private
entities, such as hospitals, whereas Section 504 would cover recipients of federal
financial assistance, federal executive agencies, and the U.S. Postal Service. After
finding coverage, the next step is to determine whether the individual is an individual
with a disability and whether discrimination has occurred.
76 (...continued)
risk of hospitalization and death would be infants, the elderly, and those with underlying
health conditions; (2) that the health-care system would be “severely taxed if not
overwhelmed due to the large number of illnesses and complications”; (3) that during a
pandemic wave between 25% and 30% of persons will become ill during a six- to eight-
week outbreak; (4) that there is limited information available to assess potential impacts on
critical infrastructure sectors, such as transportation and utility services; and (5) that the
U.S.- based vaccine production capacity would be 3 to 5 million doses per week, with three
to six months needed before the first doses were produced. These assumptions, however,
could change. For example, individuals who are at greatest risk of hospitalization and death
may not be infants, the elderly, and those with underlying health conditions. In the 1918
pandemic, most deaths occurred in young adults. See HHS Pandemic Influenza Plan,
Appendix D, [http://www.hhs.gov/pandemicflu/plan/appendixd.html].
77 An influenza pandemic differs from these other disasters in that it would be global in
nature; span a year or more, with waves of peak activity in various areas; and have
significantly greater potential mortality. One commentator found that “If 1918-19 mortality
data are extrapolated to the current U.S. population, 1.7 million people could die, half of
them between the ages of 18 and 40. Globally, those same estimates yield 180-360 million
deaths....” Michael T. Osterholm, “Preparing for the Next Pandemic,” 84 FOREIGN AFFAIRS
78 See e.g., National Council on Disability, SAVING LIVES: INCLUDING PEOPLE WITH
DISABILITIES IN EMERGENCY PLANNING (April 15, 2005), reprinted at [http://www.ncd.gov/
newsroom/publications/2005/saving_lives.htm]; Congressional briefing, Emergency
Management and People with Disabilities: Before, During and After (November 10, 2005),
reprinted at [http://www.ncd.gov/newsroom/publications/2005/transcript_
emergencymgt.htm]; Emergency Preparedness for the Elderly and Disabled: Field Hearingth
Before the Senate Special Committee on Aging, 107 Cong., 2d Sess. (February 11, 2002).
Certainly some situations (e.g., denial of a vaccine to an individual solely
because of a visual or mobility impairment unrelated to how that individual would
respond to the vaccine) would most likely run afoul of the ADA’s goal of eliminating
actions resulting from stereotypic assumptions and of its nondiscrimination
requirements.79 A determination of who is to receive vaccines or other medical
treatments that are in limited supply should involve careful consideration and
safeguards to avoid the reliance on stereotypical assumptions that might trigger a
violation of the ADA or Section 504. However, a determination that an individual
not receive a vaccine because the vaccine would not be effective given his or her
health situation would be unlikely to raise ADA concerns, because it would be based
on a medical determination of treatment. The mere fact that a decision would have
a disparate impact on individuals with disabilities would not necessarily be sufficient
to violate the nondiscrimination mandates.80
Many of the situations that might occur are likely to be much more difficult to
analyze, especially if physicians and hospital staff are faced with the kind of extreme
situations described in congressional hearings.81 For example, decisions regarding
who should be admitted to a hospital when there is a shortage of beds, as well as who
should receive scarce medications, could be difficult to make. To the extent that
these decisions are based on an individual medical treatment decision (e.g., where the
individual is allergic to the scarce medication or would not mount an immune
response to the vaccine), case law under the ADA and Section 504 would indicate
that a violation of these statutes would be unlikely. However, to the extent that the
decision is based on stereotypical assumptions, there may be a violation of the ADA
or Section 504.
An influenza pandemic with shortages of medical supplies, such as ventilators,
could raise issues concerning whether treatment that has begun should be stopped.
For example, if an individual with a severe underlying medical condition such as
heart failure were infected with the influenza virus and, as a result of the virus, was
on a ventilator with unlikely prospects for survival, would the removal of such an
individual from the ventilator so it could be used for an individual with a stronger
likelihood of survival violate the nondiscrimination mandates of the ADA or Section
79 42 U.S.C. §12101.
80 Alexander v. Choate, 469 U.S. 287 (1985).
81 See e.g., Pandemic Flu: Joint Hearing Before the Prevention of Nuclear and Biological
Attack and Emergency Preparedness, Science and Technology Subcommittees of the Houseth
Homeland Security Committee,109 Cong., 2d Sess. (February 8, 2006), Testimony of Dr.
Tara O’Toole.
82 This is one of scenarios examined, although not in the context of the ADA or Section 504,
in John L. Hick, MD and Daniel T. O’Laughlin, MD, “Concept of Operations for Triage of
Mechanical Ventilation in an Epidemic,” 13 ACADEMIC EMERGENCY MEDICINE 223
(February 2006).
83 The closest analogy would be to the situations raised by assisted suicide or “right to die”
cases; however, these cases do not directly concern an immediate shortage of medical
(continued...)
in extreme situations, such as where hospitals are grossly overcrowded and
understaffed and where the hospitals may be operating in a triage situation. Finally,
these types of issues involve not only the application of law, but also an application
of the underlying ethical considerations.
83 (...continued)
equipment. For a discussion of these issues, see CRS Report 97-244 A, The “Right to Die”:
Constitutional and Statutory Analysis, by Kenneth R. Thomas.