The impact of laws on HIV and STD prevention

The role of law in HIV and STD prevention and control is important because of the impact of these diseases. At an individual level, these can be devastating diseases, some lasting a lifetime. At the level of public health, HIV and the STDs are major problems in the United States. Despite the introduction of HIV treatments in 1996, AIDS and HIV remain at epidemic levels. Since the start of the epidemic, nearly 800,000 persons have been reported with AIDS, and half of those are known to have died. In the last twenty years, AIDS has increased most dramatically among women and minorities, and AIDS deaths have been strongly associated with poverty and with minority and female status. It is estimated that approximately 900,000 Americans are currently living with HIV infection and that roughly half of these are untested, untreated, or both. Rates of new infections have been high and stable since the early 1990s.1

STD rates are even higher. Each year, 15 million people in the United States, of which onefourth are teenagers, become infected with one or more STDs. Chlamydia is the most common of all bacterial STDs, with an estimated three million new cases occurring each year. Gonorrhea is on the rise for the first time in twenty years, and an estimated 650,000 new cases occur each year in the United States. Yearly incidence rates for other STDs are one million for herpes and over five million for human papillomavirus. The direct and indirect costs of the major STDs, not including HIV infection, and their complications are estimated to total at least $10 billion annually.2

Efforts to curb HIV and STD incidence occur largely at the state level. The first three of the following sections provide descriptions of efforts in Georgia, Florida, and New York, respectively. A final section addresses the impact of law on the HIV pandemic.

Legislation to Address the Incidence of Chlamydia in Georgia

The passage of Georgia's Chlamydia Screening Bill into law followed a multi-year effort driven by public health officials, legislators, and health and women's advocacy groups to improve the health of women in the state.

A challenge of diagnosing chlamydia is that eighty percent of infected women are asymptomatic, and a clinical examination may not always reveal the presence of the disease. The complications of untreated chlamydia in women can lead to ectopic pregnancy, pelvic inflammatory disease (PID), and even sterility. Ectopic pregnancy is a leading cause of maternal death among African-- American women in Georgia, and Medicaid costs for treating the complications of ectopic pregnancy are high. In Georgia, a clear need for a statewide program to detect and treat chlamydia existed.

Dr. Kathleen Toomey, Director of Georgia's Division of Public Health, was largely responsible for launching the initiative that led to the bill's passage. As a federal health officer, Dr. Toomey observed and treated chlamydia and its effects among native women in Alaska. Her advocacy led to a screening protocol and a 75% reduction in the incidence of chlamydia in that population. As Georgia's state epidemiologist, she secured federal funding to conduct pilot screenings that revealed an incidence of chlamydia among teen-age girls as high as 15% of those tested in some locations in the state. The pilot screenings further revealed that the disease in young women was commonplace across the state, in small towns as well as urban populations.

These findings sparked the Georgia Legislative Women's Caucus to explore the availability of screening and treatment for chlamydia for Georgia women. With assistance from the American Social Health Association and women's advocacy groups in Georgia, a Georgia STD coalition was formed and remained active throughout the efforts to pass the legislation. In 1997, the Georgia legislature passed a resolution creating a Study Committee on Infectious Diseases, which engaged a broader grouping of legislators in learning about the threat and costs of untreated chlamydia in Georgia. The committee determined that Georgia taxpayers were paying annually more than $51 million for chlamydia complications, $124 millions for PID alone, and $59 million for hospitalizations of chlamydia cases.

The primary recommendation of the Study Committee was to address the need for screening of at-risk populations. Legislation was drafted and filed in 1998 to provide that all Georgia insurers include as basic coverage an annual chlamydia screening for women under the age of 30. The fact that chlamydia infection creates a gateway opportunity for the spread of both gonorrhea and HIV infection lent an additional urgency to the message given to the state's budget writers.

As the bill moved forward, insurance and business lobbyists firmly opposed its passage. Some legislators based their opposition on the belief that these diseases result from illicit sexual behavior and that state funds should not be used to "support" such behaviors. This powerful opposition was overridden by the combination of the sobering costs of the disease, the commitment of the Women's Caucus to passage of the bill, the building of an active and broad STD coalition, and the advocacy of key, influential players. The Georgia chlamydia screening insurance legislation became law in July 1998. In addition, the state budget included funds for the state public health initiative to provide screenings for at-risk uninsured women in public health clinics.

The progress on this particular STD issue created a precedent for public policy discussion of a formerly sensitive topic. The breaking of the ice, so to speak, helped create a climate for passing contraceptive equity legislation in 1999. This legislation requires that all insurance prescription plans include coverage of prescribed FDA-- approved contraceptives, another step forward for positive public health policy in Georgia.

HIV Name-Based Reporting in Florida

In 1999, over some vigorous political opposition, the Florida legislature passed a law that provided for name-based reporting of HIV cases in the state. The new law required state health department staff to ask permission of private providers in order to offer Partner Counseling and Referral Services (PCRS) to HIV infected persons. One impact of this provision was a loss of STD services staff because of the 20% increase in workload that the mandated contact with private providers created. Yet another impact was that different cities in Florida had very different PCRS implementation rates because of the variable efficacy of AIDS/HIV surveillance offices in obtaining permission from private providers to offer PCRS. For example, in one year, Miami's PCRS rate was 31%, compared to 100% in Orlando. In June 2001, this obstacle to widespread effective implementation of PCRS was removed from the legislation. Contact with private providers prior to initiation of PCRS is now a courtesy, as with all other STDs, not a requirement.

The success of the implementation of the HIV name-based reporting law has been significant in terms of the numbers of both persons informed of exposure and new cases located and referred early to treatment. From 1996 to 2001, the private provider as a source of HIV-positive tests increased, from 5.4% to 21.5% of all such tests reported. Corrections facilities as a provider source increased from 2.5% to 7.9%. During 2001, 5,873 new HIV infections were reported in Florida. Of those, 58% (3,405) were assigned to STD services staff for follow up. Over 80% (2,755) of these positive persons were located, and 51.2% (1,411) of the located persons requested PCRS and accepted the offer of assistance to notify sex- and needle-sharing partners. Of the named partners, 67% accepted the opportunity for HIV testing. During the period 1997 to 2001, of the persons located and counseled regarding their exposure to HIV infection, the percentage of newly identified cases increased from 11% to 15.6%. Since the July 1997 implementation of HIV name-based reporting in Florida, 5,869 partners unaware of their exposure have been notified by the STD program staff.

With passage of the law, some feared that testing rates would be adversely affected, with increases in anonymous testing or even an overall reduction in testing rates. To the contrary, testing rates have continued to rise annually, with no change in the proportion of anonymous testing.

In addition to the HIV PCRS responsibilities in Florida, the STD staff workload in 2001 included a combined total of 24,012 positive tests for syphilis, chlamydia/gonorrhea, and perinatal hepatitis B. Local STD program staff worked to verify treatment of each of these positive STD reports. In addition to ensuring adequate treatment for clients diagnosed with a bacterial STD, the staff offered PCRS to a total of 2,797 high priority clients(b) who accepted the offer, with the result that 4,989 partners and other at-risk persons were assigned for follow-up services.

Although there have been obvious benefits from the implementation of this law, the name-- based reporting program also has had some unintended consequences. Unforeseen negative impacts have included contradictory inter-state obligations and the financial cost created by insurance repeaters-those who make multiple requests for face-to-face counseling on the meaning of their test results and necessary changes in behavior. Some inter-state referrals receive no final disposition, a problem typical of more transient populations. In addition, health officials continue to struggle with how to cope with those they believe are sexual predators; in each case, health officials must balance the need to protect confidentiality against the need to release information that would expose the actions of these dangerous individuals. Staff retention also has been a major issue that will most likely continue to be problematic. In spite of such issues, the name-based reporting law has led to real public health benefits for Florida.

HIV Tracking in New York

In June of 2000, with passage of the HIV Reporting and Partner Notification Act (HIVRPN), New York became the 33rd state to require that HIV be tracked as a reportable condition. New York may have also become the first state to explicitly integrate partner notification and reporting by statute. The New York Department of Health's AIDS Institute received funding from the Centers for Disease Control and Prevention to conduct a three-year research project to assess the public health impact of the legislation. The following comments outline the study's progress and current findings.

AN ANALYSIS OF DATA COLLECTED IN THE NEW YORK STATE HIV/AIDS SURVEILLANCE AND PARTNER NOTIFICATION SYSTEM

As of May 31, 2002, the electronic HIV/AIDS Surveillance and Partner Notification system has been fully developed and successfully implemented in all 62 counties in New York State. An initial data report, capturing all available information from program inception, June 1, 2000, through December 31, 2000, was released in early 2002.

The data show that a total of 16,866 HIV/AIDS cases with HIV-related laboratory testing or provider diagnosis from June 1, 2000 through December 31, 2000 were confirmed as HIV, HIV-related illness, or AIDS. Of the confirmed cases, 2,817 (17%) were initial HIV diagnoses, 9,036 (53%) were HIV illness diagnoses, and 5,013 (30%) had progressed to AIDS. A total of 12,144 cases, or 72%, were New York City residents, while 4,722 cases, or 28%, were from counties outside New York City. These preliminary totals will increase as surveillance follow-up is completed and additional cases are confirmed.

The gender, age and race/ethnicity distributions differed for newly diagnosed HIV as opposed to newly diagnosed AIDS cases. A greater proportion of females existed among the newly diagnosed HIV cases (41%), compared to the AIDS cases (30%). African Americans and Hispanics comprised approximately 85% of the HIV cases and 77% of the AIDS cases. The mean age of newly diagnosed HIV cases was also lower than the mean age of those diagnosed with AIDS.

A total of 2,342 partners of index cases tested from June 1, 2000 through December 31, 2000 were reported to the State Health Department. Medical providers reported that 46% of identified partners had been notified, either by the provider or through notification by the index patient. An additional 9% of partners were notified directly by New York State or New York City partner notification staff. Notification was in progress for an additional 3% of partners. Approximately 40% of partners were not notified because of insufficient locating information, out-of-state partner residence, partner death, or other mitigating circumstances. Finally, 2% of notifications were deferred because of the risk of domestic violence.

MEASURING AGGREGATE CHANGES IN HIV TESTING LEVELS AFTER THE IMPLEMENTATION OF THE HIVRPN REGULATIONS

The AIDS Institute staff obtained and analyzed counseling and testing as well as Medicaid data in order to determine changes in HIV testing levels after the implementation of HIVRPN regulations. Preliminary results of the analysis of these data indicate that, after adjustment for existing trends/drifts and autocorrelation effects in the series, no changes in HIV testing levels could be attributed to the implementation of the law and the associated regulations. Sub-group analyses (by age group, sex, race/ethnicity, region, and risk factor) also failed to indicate a measurable impact of the law/regulations on HIV testing levels. In addition, the staff has obtained HIV home testing data from Home Access, New York's only home HIV testing company. Analysis of these data will allow documentation of any impact of the legislation on the HIV home testing market in the state. Preliminary analyses are underway.

USE OF FOCUS GROUPS OF HIV/AIDS CONSUMERS AND PROVIDERS

To establish a more complete understanding of the social and economic losses that concern individuals regarding HIV testing and the issue of notifying partners, the AIDS Institute staff formed six focus groups consisting of HIV-positive individuals. To explore partner notification and domestic violence screening practices of providers, the staff formed two additional focus groups consisting of HIV/AIDS service providers. Focus group sessions were conducted from August through December 2001. Preliminary findings from the focus groups reveal that:

1. Breaches of confidentiality and resultant stigma experienced by HIV-positive individuals were largely from within their own communities or informal networks rather than from service providers or government officials;

2. Focus group participants expressed a low awareness of the details of the partner notification law, or even awareness of "partner notification" as a formal concept;

3. Focus group participants reported little usage or awareness of the formal partner notification assistance programs operated by the departments of health of New York City and New York State;

4. Acknowledgement of the responsibility to notify partners varied by situation and partner type: there was little support for the need to notify past sexual partners, and there was virtually no recognition of the need to notify needle-sharing partners;

5. Participants reported both the potential for and the reality of violence resulting from being identified as HIV positive;

6. Participants felt entitled to the protection of the partner notification law, once that protection was explained to them; however, few reported knowing how to access the protection;

7. HIV service providers reported that initial concerns that the HIVRPN law might drive down HIV testing have been proven unfounded; and

8. Providers stated the belief that intimate partner violence was a major issue among HIV-positive clients and that more work to assist with intimate partner violence was being done by providers than was being reflected in reports to the health department.

PILOT TESTING THROUGH THE HIV TESTING ATTITUDES AND PRACTICES SURVEY (HTAPS)

To measure attitudes toward HIV testing as well as current practices among HIV-positive individuals, the AIDS Institute staff developed plans to administer a modified version of the CDC-funded HIV Testing Survey called the HIV Testing Attitudes and Practices Survey (HTAPS). Testing of HTAPS occurred in the summer of 2001. The survey was administered in Buffalo during the winter of 2002. The Buffalo survey data are being readied for analysis. Preliminary results suggest high levels of previous HIV testing among intravenous drug users (IDUs) and men who have sex with men (MSM) sub-samples, with lower rates exhibited among clients of STD clinics. Very few individuals who had not tested or who had delayed testing did so because they were concerned about their names being reported to the government. In fact, respondents indicated only moderate awareness of how HIV reporting worked in New York State and even less awareness about specifics of New York's HIV reporting and partner notification law. Respondents from STD clinics evidenced the lowest levels of awareness, while IDUs were the most informed of the three groups. Attitudes toward HIV partner notification also differed by venue. In general, MSM expressed the strongest reservations concerning the desirability, confidentiality, and efficacy of partner notification assistance programs, while the STD sub-sample was most accepting of these programs. Finally, intimate partner violence was reported in each interview setting, although the prevalence, frequency, and nature of abuse differed in each venue. HTAPS will be implemented in Rochester during the summer of 2002.

The Impact of Laws on the HIV Pandemic and on Individuals

Laws act as pathways for social determinants that impact HIV risk or resilience in multiple ways. Laws establishing eligibility requirements for Medicaid or State AIDS Drugs Assistance Programs can act as a mechanism through which poverty or low socioeconomic status translates into poor clinical care for persons with HIV, specifically delayed or intermittent access to anti-retroviral therapy. Laws also strictly limit access to methadone to federally licensed clinics. Here, law serves as a mechanism for stigma by clearly identifying clients of methadone clinics as IDUs in the eyes of the community.

Ideally, criminal law and law enforcement act as tools through which society ensures public safety and strengthens communities by reinforcing norms of non-criminal behavior. Unfortunately, criminal law and policing can also act as pathways for determinants that negatively impact health and influence HIV risk. Substantial evidence demonstrates that drug control laws, as currently defined and enforced, have racially disparate impacts. Minorities, and particularly African Americans, are much more likely than Hispanics or whites to be stopped, arrested, and convicted for drug-related crimes and to serve longer sentences. Higher rates of incarceration for minority drug users translate into increased HIV risk because drug treatment in prison is inadequate in instances in which risky drug use and sex continue in prison. In addition, police activity disrupts social networks of drug users and sex workers and makes it more likely that drug use or sex will occur in high-risk settings. Mandatory minimum sentences for certain crimes ensure that some offenders, even first time offenders, will spend time in prison and be exposed to the risks inherent there. Strict enforcement of drug control laws, although intended to make communities safer, may actually increase community members' distrust of law enforcement and undermine communities' attitudes toward legitimacy of the law.

Law can also shape underlying social determinants of health, affecting socio-economic status and income inequality, attitudes toward race and racism (as laws may support stigmatization and isolation of ethnic groups), community and social organization, and specifically social capital and social cohesion. Law can also affect important resources such as housing and education that are closely linked to social determinants. Since social epidemiology demonstrates significant associations between many of these determinants and poor health, including elevated HIV risk, investigating laws' role in shaping these determinants matters.

Laws can also exacerbate existing social problems. For example, laws governing state-subsidized housing may actually increase homelessness to the degree that they deny housing where anyone in the family is convicted of drug use or else mandate residency requirements before families are eligible for state supported housing. Laws may also shape other important resources, such as access to education. Currently, anyone convicted of drug offenses becomes ineligible for federal student loans. Tax laws, welfare provisions, even debtor-creditor law may promote income inequality and thus exacerbate the effects that inequality has on health. The application of criminal laws that result in high levels of incarceration for minorities has also been labeled a "race-making" factor by some commentators. Disproportionate incarceration stigmatizes whole communities and promotes stereotypes of minorities, especially African Americans, in ways that can perpetuate racist attitudes among the non-African American population and isolate African Americans from the wider community.

Laws also shape social capital, social cohesion, and socioeconomic status in ways that can increase the risk of ill health and HIV risk. At current rates of incarceration, some estimate that 30% of African American men will soon be unable to vote because of laws that disenfranchise those convicted of felonies. Voting is a powerful measure of social participation that predicts involvement in other community-building activities. Depriving a substantial portion of a community of the right to vote not only decreases its ability to directly affect the outcome of elections, but it also decreases the overall social capital of the community. Incarceration also decreases social cohesion where substantial numbers of families have a parent in prison or where incarceration has greatly decreased the overall number of adults in a community available to act as role models or to supervise children.

Yet, structural interventions, including laws, can also be employed to decrease HIV risk. Several policy options are available that could potentially alter the role of law as a pathway for social determinants (e.g., by increasing access to methadone and comprehensive HIV care). Laws can also seek to change underlying social determinants such as poverty, race, and community social organization.

Law may also be limited as a structural intervention. Whether and how laws are implemented and enforced may vary. For instance, some behaviors may be so intimate that law is a poor tool for change. Historically, laws aimed at adultery, sodomy, and fornication have been relatively ineffective in abating the behaviors. Other limitations include the fact that policy makers often find competing policy priorities and scientists and lawyers often find themselves speaking different languages. Nevertheless, law can profoundly shape social determinants. HIV-related laws represent one approach to integrating law and social epidemiology. Policymakers should consider additional research, reform, or intervention as they continue to refine responses to HIV and other health issues.

Conclusion

The process of passing public health laws regarding sexually transmitted diseases provides a vivid example of barriers often arising from consideration of previously unspoken sexual practices. A specific law may produce unforeseen or unwanted results. For example, new STD and HIV laws affect the workloads of healthcare employees who provide testing, referrals, and counseling. As a consequence, staff retention and data management, in particular, can be severely affected. At the same time, while new laws for improvements in HIV testing behavior hold promise, it is difficult to assess whether such laws cause the desired or even the observed changes. Finally, it is necessary to recognize that law is a structural factor influencing various social determinants and affecting health impacts in a broad sense.