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 AI
2、DS“,Atlanta Journal-Constitution, 16 June 2005 Researchers said yesterday at CDCs 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 o
3、ver in the United States, like many people think it is,“ Dr. Ron Valdiserri of CDCs HIV division said at the conclusion of the biennial conference. “Its an increasingly complex epidemic in the US, with multiple populations affected.“,3,Objectives,Put public health in a historical context Explain the
4、 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 Communi
5、cable 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 Quadr
6、aginta 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
7、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 fede
8、ral 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 s
9、tates 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 Di
10、seases 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 Treatmen
11、t 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 law
12、s 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 an
13、d 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 Healt
14、h,“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 Per
15、sonal 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 displa
16、ced 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 plaintiffs la
17、wyers,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 b
18、egan 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 ch
19、ildren, 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 gl
20、obal 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 sym
21、pathetic 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
22、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 Ba
23、thhouses 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
24、 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) Bathh
25、ouses 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 fro
26、m 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 AI
27、DS 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 informati
28、on 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 empl
29、oyees 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 posi
30、tive 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 anonymo
31、us 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)
32、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
33、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
34、 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
35、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 t
36、hat 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
37、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 Co
38、ntrol 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 exce
39、ptionalism 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 inform
40、ation 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
41、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 Law
42、s,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 states ability to use traditional public health measures in all are
43、as 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,39,The Federal Governments Role,Since the feder
44、al 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 Require
45、ments 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,
46、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 p
47、rojects 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
48、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 e
49、mergencies,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- Barr Syndrome: A Case Study in Relative Risk and
50、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 AID
51、S 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,