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