CHAPTER 9
AIDS AND INTRAVENOUS DRUG USE

Substance abuse and addiction are major underlying causes of preventable morbidity and mortality in the United States. The risks increase when illicit substances are injected, which contributes to multiple health and social problems for IDUs [injection drug users], including transmission of bloodborne infections (e.g., human immunodeficiency virus [HIV] and hepatitis B and C infections) through sharing unsterile drug injection equipment and practicing unsafe sex. In the United States, approximately one third of acquired immunodeficiency syndrome cases and one half of new hepatitis C cases are associated with injection drug use.

—Centers for Disease Control and Prevention, in Morbidity and Mortality Weekly Report, vol. 50, no. 19, May 18, 2001

HIV/AIDS—THE BACKGROUND

The human immunodeficiency virus (HIV) was first detected in 1981 and has been claiming lives since then all over the world. The virus causes an infectious disease that, if left untreated, rapidly develops into acquired immunodeficiency syndrome (AIDS). People often use the abbreviations HIV and AIDS interchangeably, but there is a definite progression. HIV infection comes first and AIDS is the last stage of the disease. A small percentage of those testing positive for HIV remain unaffected by the disease and do not develop AIDS. They are known as "non-progressors." In most people HIV progresses to AIDS, and AIDS is still incurable and invariably fatal. The progression to AIDS can be slowed but not yet prevented.

HIV interferes with and ultimately blocks the body's immune system. Infected people have a reduced count of a crucial blood cell called CD4 lymphocyte. When CD4 is present, it prevents the onset of many fatal infections and cancers. In HIV-negative healthy people the CD4 count is between 500 and 1,500 cells per cubic millimeter of blood. CD4 counts below 350 may signal HIV infection; levels below 200 are considered to indicate the presence of AIDS ("AIDS," MEDLINEplus, a service of the National Library of Medicine and the National Institutes of Health, http://www.nlm.nih.gov/medlineplus/ency/article/000594.htm).

Only a test administered by a qualified health professional can absolutely diagnose HIV infection. In addition to having one or more opportunistic infections (bacterial, fungal, protozoal, and viral agents that take advantage of an immune system weakened by HIV), infected individuals also have other symptoms. They may experience a general malaise, weight loss, nausea, fever, night sweats, swollen lymph glands, persistent cough, unexplained bleeding, watery diarrhea, loss of memory, balance problems, mood changes, blurring or loss of vision, and thrush (a white coating of the tongue and throat). Individuals who die of AIDS die of opportunistic infections and cancers, not of the virus; the effect of the virus is to weaken their bodily defenses.

WAYS HIV IS TRANSMITTED

While much has been done to educate the American public about how HIV is transmitted, many individuals are unaware of, or ignore facts about, the methods of transmission. Some people are in "high risk groups," but they are not the only ones who become infected with HIV.

HIV is transmitted through body fluids, e.g. blood, semen, and vaginal secretions. Most infections occur in the course of anal, vaginal, or oral sexual contact with an infected person. A baby can also acquire the disease from his or her infected mother perinatally, i.e., at some point around the time of birth, or later by drinking her breast milk, another body fluid that carries HIV. People may also be infected through blood transfusions or transplanted organs.

The connection between drug use and HIV arises because intravenous drug users share needles and syringes that have not been sterilized. When these instruments are exposed to infected blood, the disease can pass from an HIV-positive person to another who is not infected. Substantial numbers of individuals are infected with HIV because of drug use. Later they can pass the virus on to others through sexual contacts or more instances of needle-sharing.

In this country the groups at greatest risk, according to the Centers for Disease Control and Prevention (CDC) in A Glance at the HIV Epidemic (http://www.cdc.gov/nchstp/od/news/At-a-Glance.pdf), are men who have sex with men, intravenous drug users, and people who have heterosexual contact with infected individuals.

THE DEATH TOLL OF AIDS

Since the onset of the HIV/AIDS epidemic around 1981, a cumulative total of 892,875 adults (including adolescents) have been diagnosed with AIDS in the United States as of the end of 2003. (See Table 9.1.) In the 1981-2003 period, 518,957 people thirteen and older have died of AIDS. (See Table 9.2.) An additional 9,419 children under thirteen were also found to have the disease. (See Table 9.3.) More than five thousand children have died. According to the CDC, for every one hundred persons diagnosed with AIDS, fifty-six have died; for every one hundred children diagnosed, fifty-four have died. The peak in AIDS diagnoses came in 1993 (78,954 persons diagnosed); the peak in deaths came in 1995 (50,876 deaths of adults). Since then both diagnoses and death have been declining, as educational programs have taken hold and curbed unprotected sexual behavior that leads to infection and as treatment programs have been devised to delay the progression of HIV to AIDS. The CDC reports that the peak in children's deaths from AIDS came in 1994, a year ahead of the peak for adults/adolescents.

By Gender, Race/Ethnicity, and Age

2003 AIDS rates by age, race, and sex are shown in Table 9.4, and cumulative totals for AIDS cases and AIDS deaths are shown in Table 9.3 and Table 9.2 respectively. According to the CDC, most adults who have died of AIDS have been males (84.2%).

African-Americans and Hispanics were affected well above their share in the total population by the AIDS epidemic. African-Americans had about half of the total AIDS deaths in 2003 but as of the 2000 U.S. Census made up only 12.3% of the total U.S. population. Hispanics had 21.7% of AIDS deaths in 2003, while representing 11.1% of population three years earlier. Whites, with 71.8% of the population in 2000, experienced 26.5% of total AIDS deaths in 2003. Asians/Pacific Islanders were affected at lower rates than their share in total populations; they had 0.5% of 2003 AIDS deaths, compared with 3.9% of the 2000 population. American Indians/Alaska Natives had 0.4% of 2003 AIDS deaths; in 2000, they were 0.7% of the total population.

Of those who died of AIDS in 2003, the largest number were aged thirty-five to forty-four (38.7%) followed by those aged forty-five to fifty-four (33.1%). Together, these two age groups accounted for nearly three quarters of all AIDS deaths in 2003. The population of people dying from AIDS seems to be aging. Only 1,928 people aged twenty-five to thirty-four died of AIDS in 2003 (10.7% of the total), compared to 3,258 in 1999 (17.6%), according to CDC data.

SHARING EQUIPMENT

Drug use can lead to HIV infection, then to AIDS, then to death because drug users share equipment contaminated with infected blood. The equipment involved is the syringe, the needle, the "cooker," cotton, and rinse water used to prevent blood from clotting in the needle and syringe.

The syringe and the needle can become contaminated when infected blood is left behind between uses. This can occur when users draw back their own blood into a syringe and then inject the blood again several times in an attempt to capture and inject all of the drug held in the syringe. This practice, known as "booting," does not occur when users practice intramuscular or subcutaneous injection, known as "skin popping."

Tests have shown that bleach, hydrogen peroxide, and alcohol can kill HIV in a test tube (in vitro). These substances can be effective for cleaning a syringe and needle if the solution fills the syringe completely, but using disinfected syringes and needles is still not as safe as using new, sterile equipment.

The "cooker" is any small container, usually a spoon or a bottle cap, used to dissolve the injectable drug, most often a powder. Contamination may occur when infected blood is pushed out of the needle or syringe into the cooker while a new shot of the drug is being drawn up. If the needle and syringe are effectively sterilized, the cooker will not be contaminated. In the event of cooker contamination, heating the cooker between shots can kill the virus.

Drug users sometimes employ a piece of cotton as a strainer to trap any impurities from the cooker solution. They strain the solution through the cotton as they draw solution into the syringe. Instead of disposing of each piece of cotton immediately after use, a user will sometimes "beat the cotton" with a little

water in an attempt to extract the tiniest bit of the drug that may be left in it. The cotton can become infected if the syringe and needle have not been properly sterilized.

Syringes and needles are usually rinsed out before reuse, not necessarily to decontaminate them but to prevent clotting blood from blocking the equipment. If the rinse water does not contain bleach to disinfect the instruments, use and reuse of the same rinse water can also be a source of contamination.

When two drug users share equipment, one positive for HIV, one not, and the equipment is not properly sterilized between uses, the infection can pass from the carrier of HIV to the healthy person. Other blood-borne diseases can follow the same pathway, including Hepatitis B and Hepatitis C viruses, which cause liver disease.

HIV infection caused by sharing drug paraphernalia can pass to others through sexual contact, and it can also pass to newborn children through childbirth and breastfeeding.

PREVALENCE

Gender and Age Group

In 2003, 43,112 adults (including adolescents) were diagnosed with AIDS. (See Table 9.3.) Of this total, 9,449 got AIDS directly by injecting drug use (21.9%). In that same year, fifty-nine children under thirteen (so-called pediatric cases) were also diagnosed, substantially less than in 1992; all but one of them got the disease perinatally from infected mothers. (See Table 9.5 and Figure 9.1.) Among adult males, 6,353 diagnosed cases came as a result of injected drug use, second only to male-to-male sex among transmission categories. Another 1,877 men both had sex with another man and injected drugs. Among adult women, injected drug use was the most frequent transmission category, causing 3,096 of diagnosed cases. All told, in 2003, of a total of 43,171 new AIDS cases (adults and children combined), 11,326 cases (26.2%) had some linkage to injected drug use.

Throughout the entire history of the AIDS epidemic through 2003, of a total of 929,985 infections on record, 317,713 were drug-related infections, or 34.2%, according to the CDC's HIV/AIDS Surveillance Report.

Race/Ethnicity

MALES.

In 2003 Hispanic males and African-American males with AIDS were twice as likely to have been infected by injecting drug use (18% of cases among each of those groups) than white males (9%). (See Table 9.6.) In this and subsequent tabulations, whites and African-Americans exclude Hispanics, who may be of any race. Men having sex with men and also injecting drugs were proportionally most numerous among American Indians/Alaska Natives and whites.

FEMALES.

As noted above, a larger percentage of AIDS cases among women result from injecting drugs than is the case among men. In 2003 American

Indian/Alaska Native women had the highest infection rate due to injecting drugs (39% of the racial category) followed by whites (29%). (See Table 9.7.) In the case of infection caused by sex with a drug-injecting male, white women were highest at 12%.

PEDIATRIC CASES.

Among the ninety cases (in the twenty-five states with confidential, name-based reporting) of HIV/AIDS in infants born to infected mothers in 2003, seven involved a mother who injected drugs, and another six involved mothers who had sex with injected drug users. In thirty-eight cases, the mother had sex with a person infected by HIV from an unknown source. Sixty-two of the ninety infants in reported cases were non-Hispanic African-Americans, while fifteen were white and eight were Hispanic. (See Table 9.8.)

MORTALITY

In 1993, 12,587 adults and adolescents died as a direct consequence of AIDS acquired by injecting drug use (IDU), according to figures in the CDC's HIV/AIDS Surveillance Report. These deaths exclude deaths indirectly due to IDU such as heterosexual or homosexual contact with a drug user. In 1993 these deaths represented 27.8% of all deaths from AIDS, 51.4% of all female deaths from AIDS, and 24% of male deaths from AIDS. Among females with AIDS in 1993, AIDS acquired by injecting drug use caused the greatest number of deaths; among males, sex between males was the leading cause of infection leading to death.

Since 1993 total deaths due to AIDS have decreased, but the percentage of deaths due to needle-sharing have increased from 27.8 to 34.5% in 2003. The number of women who have died of AIDS acquired by injection of drugs has remained fairly constant for several years. While IDU is the leading cause of infection among women who have died of AIDS cumulatively since 1993, it is, as of 2003, second to heterosexual contact (which may also involve contact with a partner who uses intravenously injected drugs) in the transmission cause of women who die of AIDS. IDU-related deaths among males had increased from 24% in 1993 to 31.6% of all AIDS deaths in 2003, according to the CDC. In the 1999-2003 period, both total AIDS deaths, and IDU AIDS deaths remained fairly constant.

SYRINGE-OR NEEDLE-EXCHANGE PROGRAMS

Drug users share equipment because syringes and needles are difficult to obtain and difficult (as well as time-consuming) to sterilize in domestic environments. This has led to the establishment of syringe-exchange programs (SEPs; more popularly known as needle-exchange programs or NEPs). The logic behind these programs is that some drug users will use injection equipment to administer drugs to themselves. Therefore it could save lives—those of the drug users as well as those of their children and those with whom they have sex—if users could exchange contaminated syringes and needles for sterilized equipment. These programs are controversial. In summary, the scientific consensus appears to be that SEPs work in saving lives, but national policy opposes funding SEPs because such programs appear to encourage drug use.

Historical Background

Although there has been some regulation of hypodermic syringes in the United States since they were invented in the nineteenth century, they were widely

available until the 1970s. Needles could be purchased without a prescription and without limits on quantities purchased.

In the 1970s and 1980s most states and the District of Columbia criminalized the possession or sale of syringes without a prescription. Syringes had been sold alongside cocaine kits and marijuana paraphernalia at "head shops" (stores selling materials utilized by drug users) in cities across the country. As part of a larger project to get tough on drug use and eliminate head shops, laws were passed to limit the sale of syringes.

As it became recognized that dirty needles/syringes were causing HIV transmission in the late 1980s, syringe-exchange programs began in some cities. Since then they have provided a publicly visible and measurable means of reducing HIV transmission among intravenous (IV) drug users. However, despite the positive impact of SEPs, these largely voluntary efforts may not meet the need for syringes. Furthermore SEPs are illegal in a number of states. Efforts are underway, supported by advocacy and scientific groups, to decriminalize syringe sales, to legalize SEPs, and to obtain public funding for their operations.

As of the end of 2002, it was legal for a person to sell syringes to a person known to be a drug user in nineteen states and Puerto Rico, there was a "reasonable claim to legality" (some reason to claim the practice legal) in twenty-two states, and such sales were clearly illegal in nine states, the District of Columbia, and the Virgin Islands ("Preventing Blood-Borne Infections through Pharmacy Syringe Sales and Safe Community Syringe Disposal," Journal of the American Pharmaceutical Association Supplement, November/December 2002). States, however, have enabled their health departments to establish SEPs even where sale of syringes is prohibited, according to the CDC. Some cities have permitted SEPs to be established by declaring a local state of health emergency.

SEP Statistics

The first programs in the United States were opened in San Francisco in 1987 and Tacoma, Washington, in 1988. By September 1, 1993, at least thirty-seven SEPs were operating in thirty cities in twelve states. The CDC publishes data on SEPs and updates its tallies from time to time. The most recent survey available from the CDC was published in 2001 with data from 1998 ("Syringe Exchange Programs," Morbidity and Mortality Weekly Report, vol. 50, no. 19, Atlanta, GA: CDC, May 18, 2001). In 1998 a total of 131 SEPs were known to be operating in eighty-one cities in thirty-one states, the District of Columbia, and in Puerto Rico. SEPs had nearly doubled in number since the 1994-95 period, when

sixty-eight facilities were known to exist. The number of syringes exchanged had increased from eight million to 19.4 million in the same period. Most SEPs are thought to be members of the North American Syringe Exchange Network (NASEN), based in Tacoma, Washington. NASEN conducted a survey in 2000 in which it obtained responses from 127 programs, of which eighty-nine operated legally, twenty-six illegally, and twelve had uncertain legal status (National Surveys of Syringe Exchange Programs, NASEN, http://www.nasen.org/). Because many SEPs operate illegally or have doubts about their status, some of those responding to surveys do not permit disclosure of details of their operations.

CDC-published surveys for 1997 and 1998 show that of 107 SEPs responding in 1998, thirty-nine were large and twelve were very large—as measured by number of syringes exchanged. The twelve largest SEPs in 1998 were responsible for 62.4% of syringe exchanges; the thirty smallest (exchanging fewer than ten thousand syringes each) accounted for less than 1% (0.6%) of syringes exchanged. Exchanges increased 11.2% between 1997 and 1998 overall. Growth was greatest for the smallest programs (31.3%), least for the large programs (1%); the very largest had a growth of 17.3% and medium-sized exchanges of 10.9% from 1997 to 1998.

In addition to syringes, virtually all SEPs offered information about safer injection methods and referral to substance abuse treatment programs.

Professional/Scientific Support for SEPs

THE PUBLIC HEALTH PERSPECTIVE.

The Centers for Disease Control and Prevention, in "Changing Syringe Laws Is Part of Strategy to Help Stem HIV Spread" (HIV/AIDS Prevention, December 1997), pointed out that drug users must have access to clean syringes and drug treatment as part of a complete HIV prevention plan. One way to make this happen is to change the drug paraphernalia laws so that clean needles and syringes are available to intravenous drug users.

Public Health Service policy recommends that IV drug users be counseled and encouraged to stop using and injecting drugs, if possible, through substance abuse treatment, including relapse prevention. Failing this, however, drug users should follow various preventive measures, such as:

• Never reusing or sharing syringes, water, or drug preparation equipment
• Using only syringes obtained from a reliable source (e.g., pharmacies)
• Using a new, sterile syringe to prepare and inject drugs
• Safely disposing of syringes after one use

FOREIGN PERSPECTIVES.

Susan F. Hurley, Damien J. Jolley, and John M. Kaldor, in "Effectiveness of Needle-Exchange Programmes for Prevention of HIV Infection" (The Lancet, June 21, 1997), studied cities around the world with and without NEPs. They found that, on average, HIV increased 5.9% in cities without NEPs and decreased by 5.8% in cities with NEPs.

They also observed that "NEPs led to a reduction in HIV incidence among injecting drug users" and that their findings "strongly support the view that NEPs are effective." The researchers concluded that with their findings "and the interpretation of previous studies by the Panel on Needle Exchange and Bleach Distribution Programs [National Research Council and Institute of Medicine], the view that NEPs are not effective no longer seems tenable."

INSTITUTIONAL SUPPORT.

The National Academy of Sciences, American Medical Association, American Public Health Association, National Institutes of Health Consensus Panel, CDC, American Bar Association, and President George Herbert Walker Bush's and President Bill Clinton's AIDS Advisory Commissions—virtually every established medical, scientific, and legal body that has studied the issue of needle exchange programs—agree on the validity of improved access to sterile syringes to reduce the spread of infectious diseases, including HIV/AIDS. In July 1997 the U.S. Conference of Mayors endorsed federal and state policy changes to improve access to sterile syringes.

Fifteen of the top twenty most widely circulated U.S. newspapers have editorialized in favor of SEPs or syringe deregulation. Public opinion has been moderately in favor of SEPs. A 2000 Kaiser Family Foundation poll found 58% of the population favor SEPs and 61% favor allowing users to purchase needles at pharmacies.

The Political Debate

Needle exchange has led to intense political debate in the United States, particularly in some states (California and New York) and cities (Baltimore, Maryland; New York City; Boston, Massachusetts; and Berkeley, California). However, in many cities (Seattle, Washington; Tacoma, Washington; San Francisco, California; Honolulu, Hawaii; and New Haven, Connecticut), large-scale SEPs were set up with substantial community support.

Those who support SEPs stress the importance of the programs as gateways to counseling, education, and other referral services for addicts. This comprehensive approach is known as "harm reduction." Supporters also say that SEPs facilitate proper disposal of injection equipment and serve as outlets to supply addicts with materials that help to curb the spread of HIV.

Those opposing SEPs fear that needle programs will increase drug use by providing the means (needles and syringes) to inject drugs, although no American or foreign study has shown that SEPs increase drug use. Opponents also believe providing SEPs would appear to condone drug use and therefore undermine the message that using drugs is illegal, unhealthy, and morally wrong. In addition, they maintain that SEPs may draw scarce resources away from other, possibly more effective, programs, such as drug treatment.

Some opponents claim that needle exchange programs are not in fact exchanges, but giveaways. They say that participants rarely exchange dirty needles for clean ones, meaning that the dirty needles are still on the streets. However, SEPs typically operate on the principle of a one-for-one exchange.

Banning Federal Funds

In 1988 Congress passed the Health Omnibus Programs Extension Act (PL 100-607), banning the expenditure of federal funds for needle exchange. At the same time, Congress authorized funding for research into needle exchange programs. Under the conditions of the Department of Health and Human Services Appropriations Act of 1997 (PL 105-78), lifting the ban and using federal funds to support SEPs depended on a determination by the Secretary of Health and Human Services (HHS) that such programs reduce transmission of HIV without encouraging the use of illegal drugs.

In a February 1997 report to Congress, then HHS Secretary Donna E. Shalala announced that a review of the scientific literature indicated that needle exchange programs "can be an effective component of a comprehensive strategy to prevent HIV and other blood-borne infectious diseases in communities that choose to include them." For example, Preventing HIV Transmission: The Role of Sterile Needles and Bleach (Washington, DC: National Research Council and Institute of Medicine, September 1995) concluded that SEPs have beneficial effects on reducing behaviors such as multiperson reuse of syringes. This report estimated a reduction in risk behaviors of 80% and a reduction in HIV transmission of 30% or greater.

In April 1998 Secretary Shalala reported that a review of research findings indicated that needle exchange programs "do not encourage the use of illegal drugs." In addition, SEPs can reduce drug use through effective referrals to drug treatment and counseling.

RELUCTANCE TO LIFT THE BAN.

Both Congress and two presidents (Bill Clinton and George W. Bush) have been very reluctant to lift the ban on federal monies for needle exchange programs. To approve of such programs might appear to give official sanction to a strategy some voters consider equivalent to promoting drug use. Some legislators fear that approving such a policy would be the first step along the road to the legalization of drugs.

President Bill Clinton, who saw drug abuse increase during his term in office, was very reluctant to approve any program that could be perceived as being weak on drugs. George W. Bush opposed needle-exchange programs while running for the presidency in 2000. In response to the AIDS Foundation of Chicago, then Governor Bush stated that "needle exchange programs signal nothing but abdication, that these dangers are here to stay" ("2000 Candidate Questionnaire," AIDS Foundation of Chicago, http://www.aidschicago.org/advocacy/candidate_00.php). The Bush administration has, since taking office, consistently opposed lifting the ban on funding SEPs.

Others fear that approval of syringe exchange programs, while perhaps good policy, is only an inadequate first step toward the comprehensive drug treatment program needed to reduce drug addiction.

THE AMERICAN BAR ASSOCIATION AND STATE LEGISLATION RELATED TO NEEDLE POSSESSION.

A report prepared by the AIDS Coordinating Committee of the American Bar Association (ABA) outlined the ABA's stance on the deregulation of syringes (Deregulation of Hypodermic Needles and Syringes as a Public Health Measure: A Report on Emerging Policy and Law in the United States, Washington, DC, 2001). The ABA supports the deregulation of needle exchange programs and the relaxation of laws concerning the sale and possession of syringes.

The association advocates an approach that extends beyond SEPs. They advocate laws that allow IV users to obtain needles from any pharmacy whenever they are needed. There are several advantages of this approach. One is that it sidesteps the objection that states should not fund SEPs because it sends the "wrong message." Legalizing possession of syringes would allow users to purchase needles directly from pharmacies like any other purchase, thus not involving the government or government funds.

A second benefit is that such policies would allow much greater access to needles than SEPs allow. Because of the stigma attached to IV drug use, many users do not want to enter SEPs and be identified as addicts. Also, it is often inconvenient for users to get to SEPs, which may be located many miles from where they live. In addition, users may not be able to get as many needles as they need at once, considering that some users inject a dozen or more times a day.

The ABA identifies three types of deregulation that have been passed in state legislatures. In Oregon and Alaska, syringes are "completely deregulated"—that is, they can be bought and sold by anyone, under any circumstances. Next are states that have "unrestricted pharmacy sales," where anyone can buy as many needles as desired without a prescription so long as it is at a pharmacy. Finally, a number of states have passed "10 and under deregulation," which allows the sale and possession of up to ten syringes.

As of spring of 2005, thirteen states allowed users increased access to syringes. Alaska, Hawaii, New Mexico, Oregon, and Washington have completely deregulated the sale of syringes. Ohio, Rhode Island, and Wisconsin allowed unrestricted pharmacy sales. Connecticut, Maine, Minnesota, New Hampshire, and New York have enacted deregulation of the purchase/sale of ten or fewer syringes. The regulatory environment, however, continues to be in flux, with some regulations intended to be temporary, to be renewed only after studies show their effectiveness in controlling HIV/AIDS. Trends are in the direction of deregulation under pressure from medical authorities who clearly see a benefit in drug users having access to clean needles and in other mechanisms, such as SEPs, that minimize infection.