aids law past and future presidential advisory council on hiv/aids - 21 june 05 edward p. richards,...
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AIDS LawPast and Future
Presidential Advisory Council on HIV/AIDS - 21 June 05
Edward P. Richards, JD, MPHDirector, Program in Law, Science, and Public HealthProfessor, Louisiana State University Law Centerhttp://biotech.law.lsu.edu/cphl/slides/AIDS-com.htm
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"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."
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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
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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
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The Roots of Public Health Law Leviticus Roman water and sewer works Early renaissance Venice
Quadraginta Blackstone
Death for breaking quarantine
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Public Health in the Colonies Most of the population lived in poorly drained
coastal areas Cholera Yellow Fever
Urban Diseases Smallpox Tuberculosis
Average life expectancy was short
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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
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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
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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
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Public Health: 1850 - 1970 Sanitation
Drinking water Waste water
Environmental Health Food inspection Housing codes Working conditions
Communicable Diseases Vaccinations Investigation and control
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Communicable Disease Investigation and Control Mandatory reporting of cases
By name No anonymous testing
Disease investigation Contact tracing Screening (tuberculosis, syphilis)
Disease interventions Contact ("Partner") notification Education Treatment Isolation and quarantine
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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
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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
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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
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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
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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
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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
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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
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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)
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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
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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
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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?
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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
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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
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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
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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
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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
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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 Colorado passed the first HIV reporting law
None of the states with high numbers of AIDS cases required named HIV reporting It was argued that the only reason to report was to get
people treated. Most now report names, but allow anonymous testing
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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
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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
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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)
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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?
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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?
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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
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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.
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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
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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
Where Do We Go From Here?
End AIDS Exceptionalism
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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
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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
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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
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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
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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 Self-Defense Against Dangerous Persons, 16 Hast Const L Q 320 (1989)http://biotech.law.lsu.edu/cphl/articles/hastings/hastings-Contents.htm
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References Rosenau, M. J. The Uses Of Fear In Preventive Medicine, Boston Medical and Surgical
Journal, Vol. 162, #10, 305 - 307, Mar. 10, 1910http://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