AIDS Law Past and Future

1. 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

2. "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."

3. 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

4. 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

5. The Roots of Public Health Law • Leviticus • Roman water and sewer works • Early renaissance Venice • Quadraginta • Blackstone • Death for breaking quarantine

6. 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

7. 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

8. 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

9. 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

10. Public Health: 1850 - 1970 • Sanitation • Drinking water • Waste water • Environmental Health • Food inspection • Housing codes • Working conditions • Communicable Diseases • Vaccinations • Investigation and control

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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)

20. 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

21. 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

22. 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?

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

29. 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

30. 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

31. 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)

32. 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?

33. 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?

34. 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

35. 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.

36. 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

37. 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

38. Where Do We Go From Here? End AIDS Exceptionalism

39. 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

40. 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

41. 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

42. 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

43. 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

44. 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