AIDS Law
Past and Future
Presidential Advisory Council on HIV/AIDS - 21 June 05
Edward P. Richards, JD, MPH
Director, Program in Law, Science, and Public Health
Professor, Louisiana State University Law Center
http://biotech.law.lsu.edu/cphl/slides/AIDS-com.htm
"Secret Sex, Drug Use Fuel Rise in
AIDS"



Atlanta Journal-Constitution, 16 June 2005
Researchers said yesterday at CDC's 2005 National
HIV Prevention Conference in Atlanta that, given a
record 1.1 million people infected with HIV in the
United States, the fight against the epidemic is
becoming more complicated.
"The HIV epidemic is not over in the United States,
like many people think it is," Dr. Ron Valdiserri of
CDC's HIV division said at the conclusion of the
biennial conference. "It's an increasingly complex
epidemic in the US, with multiple populations
affected."
2
Objectives




Put public health in a historical context
Explain the breakdown in public support for
public health in the 1970s
Show how that breakdown led to AIDS
exceptionalism
Explain why ending AIDS exceptionalism is
the first step to controlling AIDS in the US
3
Public Health Law

Traditionally, public health dealt with external
threats to the individual




Communicable diseases
Environmental hazards
Many of these put the individual or business
in conflict with the good of society
Law was core to all public health

Discussing public health meant discussing law
4
The Roots of Public Health Law



Leviticus
Roman water and sewer works
Early renaissance Venice


Quadraginta
Blackstone

Death for breaking quarantine
5
Public Health in the Colonies

Most of the population lived in poorly drained
coastal areas



Urban Diseases



Cholera
Yellow Fever
Smallpox
Tuberculosis
Average life expectancy was short
6
Public Health Law Actions in
Colonial America




Quarantines, areas of non-intercourse
Inspection of ships and sailors
Nuisance abatement
Colonial governments had and used
Draconian public health powers

The Police Powers
7
Public Health in the Constitution

Federal Powers




Interstate commerce
International trade and travel
War
State Powers


Powers not given to the federal government
Police Powers

All public health except that related to foreign
shipping and commerce
8
Public Health as National Security

Epidemic disease destabilized society




The Black Death broke the feudal system
Yellow fever almost destroyed Philadelphia
The Courts and the Constitution gave the
states as much power over public health as
they gave the President and Congress over
foreign military threats
Bioterrorism reminds us of this nexus
9
Public Health: 1850 - 1970

Sanitation



Environmental Health




Drinking water
Waste water
Food inspection
Housing codes
Working conditions
Communicable Diseases


Vaccinations
Investigation and control
10
Communicable Disease
Investigation and Control

Mandatory reporting of cases



Disease investigation



By name
No anonymous testing
Contact tracing
Screening (tuberculosis, syphilis)
Disease interventions




Contact ("Partner") notification
Education
Treatment
Isolation and quarantine
11
Public Health Law: 1850 - 1970


Best public health practices shaped public
health law
The courts uniformly supported public health
laws (Richards 1989)


Laws were rejected if they were subterfuges for
restricting interstate trade or racial discrimination
Public health laws and public health
departments had broad public support
12
The Results: 1850 - 1970





Urban life expectancy almost tripled between
1850 and 1970
Tuberculosis and polio are under control
Food and water borne diseases are rare
Yellow fever, malaria, and smallpox are
eradicated in the US
Vaccinations and disease control are routine
and not controversial
13
Leading up to AIDS: 1970 - 1980


In 1969 U.S. Surgeon General William H.
Stewart testified before Congress that it was
time to close the book on infectious disease.
People no longer feared communicable
diseases
14
The Role of Fear in Public Health


"Reasonable fear saves many lives and
prevents much sickness. It is one of the
greatest forces for good in preventive
medicine ... and at times it is the most useful
instrument in the hands of the sanitarian."
(Rosenau 1910)
Fear drives public support for disease control
15
Public Health becomes Personal Health

Medicaid and the Great Society - 1964





Created a huge fund for indigent medical care
Important focus on prenatal and pediatric care
Transformed many health departments into
medical care providers
Personal medical care expertise displaced
public health expertise
Medical care values displaced public health
values
16
Vaccine Liability Cases

Restatement of Torts 2nd - 1965





Created strict liability
Exception for drugs only covers risks the
doctor/patient was warned of
Allows liability for unforeseeable risks
Allows alternative design claims
Fueled anti-vaccine campaigns by plaintiff's
lawyers
17
Stonewall Riots - 1969



Focused public attention on police harassment
of gay men and women
Showed the political power of gay voters and
supporters in big cities
Made the newly emerging bathhouse culture
off limits to public health enforcement
18
Tuskegee Syphilis Experiment

This experiment began in the 1930s to study the
natural history of untreated syphilis in black men. It
was continued until the late 1960s, long after
penicillin became available (1945), making syphilis
treatment safe and effective. This study did great
harm to the participants, and to their wives and
partners and children, who were also infected during
the duration of the experiment. It undermined the
credibility of the public health establishment in
minority communities and created suspicion of all
public health programs targeting minorities.
(Tuskegee 1973)
19
Swine Flu - 1976





Driven by the real fear of a global flu
pandemic
Vaccine was rushed into production
A national compensation program was set up
Massive push to vaccinate the public
No cases of Swine Flu
20
Swine Flu - The Epilog




Fear of Guillain-Barre syndrome and the lack
of a good lab test lead to over diagnosis
Lawyers helped patients find sympathetic
docs
Huge liability for the government, (Unthank)
despite limited scientific support (Freedman)
Federal and local public health loses
credibility and becomes more politically
sensitive
21
Hepatitis B in Bathhouses - 1976

Data published in 1976 and 1977 showed a
huge hepatitis B epidemic in the bathhouses




Almost everyone who was active became infected
Hepatitis B is sometimes fatal, with long term
complications
Nothing was done to close the bathhouses
Why?


Distracted by Swine Flu?
Politically unwilling to take unpopular action?
22
Bathhouses and HIV: 1976-1980

HIV was rare initially



Bathhouses allow a huge number of different contacts
Bathhouses allow mixing of social classes and
nationalities
HIV is hard to catch




Bathhouses allow high frequency sex
Bathhouses allow high risk sex
Bathhouses encourage other STIs, which increase HIV
transmission
Bathhouse clientele also included IV drug users
23
What if the Bathhouses had been
Closed in the 1970s?

Without bathhouses, HIV would be a small
problem in the US



Mathematical models show that bathhouses
amplified the HIV epidemic in gay men
Models show that bathhouses are still critical to
the spread of HIV in the US (Thompson)
Bathhouses were the start of AIDS
exceptionalism, before AIDS was discovered
24
1981 - Ground Zero in the US

GRID and the first cases (5 years late)


HIV was originally concentrated in several metropolitan
areas on the coasts: San Francisco, Los Angeles, Houston,
Miami, and in the East Coast Metroplex from Baltimore
through Washington DC, New Jersey, New York City to
Boston.
Working out the epidemiology



We did traditional investigation for the first cases
Exactly the same epidemiology as the hepatitis B in the
bathhouses in the 1970s
Exactly the same people
25
Initial Fears

When it was known that AIDS was a disease of gay
men and IV users, questions were raised about
whether it could be spread to others




Pressure to fire gay waiters and hair dressers
Claims of housing discrimination against persons with
AIDS
These claims were difficult to substantiate
Civil libertarians pushed to keep information about
AIDS secret
26
The Bathhouses Redux




Bathhouses in NY were left open until 1985, when
death weakened the opposition to closing (St. Marks
Baths)
Public health experts who pushed to close
bathhouses lost their jobs (Joseph 1993)
Gay activists, bathhouse owners, and even health
department employees claimed that bathhouses were
good places to do sex education
Some never closed and many others have reopened
27
The HIV Test



In 1985 a blood test for HIV became available
The debate shifted to the identification of HIV carriers
who had not yet developed AIDS
Some states required reporting positive HIV tests by
name, as with other diseases such as syphilis


None of the states with high numbers of AIDS cases
required named HIV reporting


Colorado passed the first HIV reporting law
It was argued that the only reason to report was to get
people treated.
Most now report names, but allow anonymous testing
28
Anonymous Testing

Only for HIV



Health departments had always had a few people give
fake names in sexually transmitted disease (STD) clinics,
but the clinic policies did not encourage this
There is no evidence that anonymous testing has a
significant effect on HIV testing (Judson 1988)
Anonymous testing prevents reporting and
investigation



Congress was lobbied to require anonymous testing sites
as a condition of federal funding
States with named reporting were forced to allow
anonymous testing
Anonymous testing is still offered in most states
29
Reporting




All communicable disease reporting is local, with
data sent from the state to the federal government.
There are no national standards or laws for disease
reporting
HIV data is very weak because of anonymous
testing, lack of named reporting, and no contact
investigation
HIV rates and spread are based on models, not real
data


Models tend to lag epidemics
Models are biased to show that prevention is working
30
Contact Tracing




Contact tracing is the best way to find hidden cases
Many states do not do contact tracing because they
see it as an invasion of privacy
It also requires named reporting and no anonymous
testing to get good input data.
It does not require perfect reporting - overlapping
contacts help fill in missing data (Hethcote)
31
Partner Notification


Warning people who have been exposed to a
communicable disease
This has been opposed on privacy grounds.



It would interfere with the right to avoid knowing
that one was exposed to HIV.
If the contact is monogamous, it is impossible to
hide the identity of the person who exposed them
What about the person being exposed?
32
Benefits of Contact Tracing and
Partner Notification



HIV is hard to catch
Many persons who are exposed can be warned
before they are infected
Persons who need help in avoiding exposure, such as
poor women, can be given social service support




Poor minority women have been hit hard by HIV
They do not know they are exposed
They need help to deal with infected partners
Remember that headline from the CDC last week?
33
Does Disease Control Cost too Much?

Contact tracing and partner notification is
expensive because HIV is now so common



The benefit of preventing cases of HIV is very
high
The human and financial costs of the continued
spread of HIV is higher
Minority communities are the hardest hit
34
HIV in Medical Care


AIDS exceptionalism extends to HIV in routine
medical care
HIV is not treated the same as other diseases



This delays diagnosis and reporting
This interferes with effective treatment
HIPAA


Whatever the original concerns about privacy of HIV
information, HIPAA has now imposed a rigorous national
medical information privacy standard.
HIPAA standards are adequate to protect HIV
information.
35
Consent to HIV testing


HIV testing should be a routine part of medical care
Many states have special laws for consent to HIV
testing




These require onerous extra paperwork and counseling to
order HIV tests
They often require the patient to be told non-medical
information intended to discourage testing
These requirements are unique to HIV and interfere
with screening pregnant women and others
There are also special medical record keeping
requirements for HIV data in some states
36
AIDS and Other Public Health Laws




Since AIDS was the hottest public health law issue in
the 1980s and 1990s, all public health law was seen as
AIDS law
AIDS activists and civil libertarians lobbied state
legislatures to weaken other public health laws to limit
the state's ability to use traditional public health
measures in all areas
Quarantine and isolation laws were the main target,
but other disease control laws also suffered
Ironically, the Supreme Court is more likely to uphold
public health laws now than it was 30 years ago
37
Where Do We Go From
Here?
End AIDS Exceptionalism
The Federal Government's Role



Since the federal government shapes state
disease control through its funding, it must
change its priorities to encourage proper
disease control for HIV
Most goals can be reached with funding
incentives and do not require national public
health laws
It will require changing state laws and rules
39
Proposed Requirements for Federal
AIDS Funding




End anonymous testing.
Named reporting of all positive HIV tests
Screen pregnant women
End all special requirements for HIV testing


HIV testing should be no different than any other
medical test
Post test counseling should not be allowed to
stand in the way of testing
40
Federal Government Funding






Contact tracing
Partner notification and assistance
Uniform disease reporting
A national clearinghouse for HIV reports
A national system for assuring that infected persons
receive up to date information on HIV treatment and
available social services.
Public health law projects designed to protect
existing powers and expand traditional disease
control laws
41
Why HIV Control Matters to
National Security






The US must have a working national reporting and
communicable disease investigation system
This cannot be a shadow plan, used only for
emergencies
It must be part of working disease investigation system
It must be used every day to maintain staffing and
readiness.
HIV costs more than other communicable diseases, yet
little of this money supports disease control.
HIV funding could support the public health
infrastructure necessary to respond to public health
emergencies
42
References







ASTHO: Association of State and Territorial Health Officers, Guide to Public
Health Practice:
AIDS Confidentiality and Anti-Discrimination Principles (March 1988)
Freedman, D.A. & Stark, PB.The Swine Flu Vaccine and Guillain- Barré
Syndrome: A Case Study in Relative Risk and Specific Causation, 23 Evaluation
Review 619 (1999)
Hethcote, HW and Yorke, JA.Gonorrhea Transmission Dynamics and Control,
Springer-Verlag, Lecture Notes in Biomathematics 56 (1984)
http://biotech.law.lsu.edu/cphl/Models/gon/index.htm
Joseph, Stephen, Dragon Within the Gates: The Once and Future AIDS Epidemic
(1993)
Judson F. and Vernon T., The Impact of AIDS and HIV on State and Local Health
Department, 78 Am. J. Pub. Health 387 (1988).
Richards, EP. "Communicable Disease Control in Colorado: A Rational Approach
to AIDS," 65 U. Dev. L. R. 127-179 (1988)
http://biotech.law.lsu.edu/cphl/articles/CO_HIV.pdf
Richards, EP The Jurisprudence Of Prevention: The Right Of Societal SelfDefense Against Dangerous Persons, 16 Hast Const L Q 320 (1989)
http://biotech.law.lsu.edu/cphl/articles/hastings/hastings-Contents.htm
43
References







Rosenau, M. J. The Uses Of Fear In Preventive Medicine, Boston Medical and Surgical
Journal, Vol. 162, #10, 305 - 307, Mar. 10, 1910
http://biotech.law.lsu.edu/cphl/history/articles/Rosenau_fear.htm
Rothenberg R, Bross D, and Vernon T, Reporting of Gonorrhea by Private Physicians: A
Behavioral Study, 70 Am. J. Pub. Health 983 (1980)
Shilts, Randy: And the Band Played On (New York: St. Martin's Press, 1987) (not the
movie)
St. Marks Baths: City of New York v New St. Mark's Baths, 130 Misc. 2d 911, 497 N.Y.S.2d
979 (1986)
http://biotech.law.lsu.edu/cases/STDs/St_marks_I.htm
Thompson, JR. Is the United States Country Zero for the First-World AIDS Epidemic?''
(2000) {The Journal of Theoretical Biology}, pp. 621-628; and James R. Thompson,
Understanding the AIDS Epidemic: A Modeler's Odyssey'' (1999), in Mathematical
Modeling, D. Shier and T. Wallenius, eds., New York: CRC Press pp. 41-69.
http://biotech.law.lsu.edu/cphl/Models/index.htm
Tuskegee - FINAL REPORT of the Tuskegee Syphilis Study Ad Hoc Advisory Panel, HEW
(1973)
http://biotech.law.lsu.edu/cphl/history/reports/tuskegee/tuskegee.htm
Unthank v. United States, 732 F.2d 1517 (10th Cir. 1984)
http://biotech.law.lsu.edu/cases/vaccines/Unthank.htm
44