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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.” |
State Policy and Program
Issues
Source: Health Policy Tracking Service, NCSL, 1998.
Blood and Semen Donation
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All blood collected
in the United States is screened for HIV-1, HIV-2, HTLV-1, hepatitis B
virus, hepatitis C virus and syphilis among other infection ("Transfusions
and HIV Infection," CDC, Aug. 4, 1997).
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More than 12,000
people have been infected with HIV through blood transfusions. Most of
these cases were due to transfusions received before March 1985, when HIV
screening of blood began ("Blood Supply: Transfusion-Associated Risk,"
GAO Report, February 1997; "Transfusions and HIV Infection," CDC, Aug.
4, 1997; HIV and the Blood Supply: An Analysis of Crisis
Decision-making, Institute of Medicine, 1995; HIV/AIDS Surveillance
Report, CDC, Mid-year Edition, 1998).
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Since March 1985, 37
adults and adolescents and two children developed AIDS after receiving
blood that tested negative for HIV antibody. Thirteen adults developed
AIDS after receiving tissue, organs or artificial insemination from
HIV-infected donors. Four of those 13 received tissue, organs or
artificial insemination from a donor who tested negative at the time of
donation (HIV/AIDS Surveillance Report, CDC, Year-end Edition,
1997).
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The risk of
transfusion-related HIV infection has dropped from one chance in 2,500 in
1985 to one in 420,000 in 1995, according to the CDC. The remaining risk
comes from a "window" of a few to several weeks during which HIV cannot be
detected by current testing procedures used by blood banks, although
potential donors are carefully screened for any HIV risk factors (APL,
Aug. 11, 1995; Consumer Reports, October 1995).
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Only approximately 27
units out of more than 12 million units of blood are found to be infected
with HIV each year ("Blood Supply: Transfusion-Associated Risks," GAO
Report, February 1997).
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At least 14
states-Arizona, California, Florida, Georgia, Illinois, Indiana, Kansas,
Kentucky, Louisiana, Michigan, New Jersey, South Dakota, Tennessee and
Wisconsin-have laws that address directed donor or self-donated (autologous)
blood donations. The laws authorize donors to designate the recipients,
require patient or physician education on the advantages and disadvantages
of designated blood donations, and require donors to be informed of fees
involved in the service (Lexis/Nexis Search, 1998; APC, July 1992).
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In the 1980s, more
than half the nation's 16,000 hemophiliacs acquired HIV from contaminated
blood-clotting products, and 2,550 of them have died. Since 1987, no new
cases of HIV infection from blood-clotting products have been reported (HIV
and the Blood Supply: An Analysis of Crisis Decision-making, Institute
of Medicine, 1995).
-
A 1997 law passed in
New York extended the statute of limitations for HIV-infected hemophiliacs
and their survivors to file a personal injury claim against a manufacturer
of contaminated products (APL, Dec. 26, 1997).
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The Ricky Ray
Hemophilia Relief Fund Act of 1998 compensates hemophiliacs who contracted
HIV/AIDS through contaminated blood products. The act authorizes a trust
fund of $750 million and grants $100,000 to each of the roughly 7,200
hemophiliacs who contracted AIDS in the 1980s (AP, May 19, 1998;
HIV Update, Sept. 11, 1998; The Kaiser Daily HIV/AIDS Report,
Nov. 16, 1998).
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The American Society
For Reproductive Medicine recommends that donated semen be tested, frozen
and held for six months to allow time for HIV antibodies to develop, then
re-tested prior to insemination. However, some physicians prefer to use
fresh semen because women inseminated with frozen and thawed sperm are 20
percent to 30 percent less likely to become pregnant (Changing Faces,
Changing Directions, APC, May 1995).
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Becoming infected
with HIV through artificial insemination with donor sperm is extremely
rare, according to the CDC. The CDC knows of only seven people who have
contracted HIV through artificial insemination of donor sperm (NYT,
Jan. 17, 1996).
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At least 21 states
require HIV testing of semen donors (NCSL, 1997 and 1998; APL ,
Dec. 26, 1997, and Jan. 22, 1999).
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California passed a
law in 1997 requiring milk banks to screen donors for HIV antibodies (APL,
Dec. 26, 1997).
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In 1998, Iowa passed
legislation (H 2369) to criminalize the transmission of HIV through the
donation, transfer or provision of infected body fluids for transfusion,
transplantation, insemination or other administration to another person.
The penalty for the criminal transmission is a class B felony (NCSL,
1998).
Condoms
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Condom sales have
climbed to $450 million a year in the United States (Consumer Reports,
May 1995).
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Correct and
consistent use of latex condoms greatly reduces a person's risk of
acquiring or transmitting a sexually transmitted disease, including HIV
infection ("Condoms and Their Use in Preventing HIV Infection and Other
STDs," CDC, February 1996).
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Condoms are
considered highly effective in protecting against HIV infection if used
for every act of intercourse. One study of "discordant couples," or
couples in which one partner is infected with HIV, found that none of the
uninfected partners became infected in couples who reported consistent use
of latex condoms, whereas 10 percent of uninfected partners became
infected among couples whose use was inconsistent ("Condoms and Their Use
in Preventing HIV Infection and Other STDs," CDC, February 1996).
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The female condom has
recently become available to consumers in the United States. If used
correctly and consistently, the failure rate is around 5 percent. Further
research is necessary to determine its effectiveness in preventing
transmission of HIV ("Condoms and Their Use in Preventing HIV Infection
and Other STDs," CDC, February 1996).
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Less than 2 percent
of condoms tear during use. Most of the failures are thought to stem from
misuse. Condoms can fail because of incorrect or inconsistent use, damage
caused by snags on fingernails or jewelry, improper lubrication and
improper storage. In one recent survey of 98 university students,
conducted by the CDC, subjects reported that 13 percent of condom uses in
the prior month resulted in a potential exposure to a sexually transmitted
disease and/or HIV ("Assessing Condom Use Practices: Implications for
Evaluating Method and User Effectiveness," Sexually Transmitted
Diseases, July 1998; The Facts, School Condom Availability,
Advocates for Youth, May 1995).
Condom Availability
-
Condoms are made
available in 418 U.S. public schools to sexually active students who
request them (The Facts, School Condom Availability, Advocates for
Youth, February 1998).
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Eighty-one percent of
school-based condom availability programs require some kind of parental
consent. Seventy-one percent make condoms available to all students except
those whose parents deny permission in writing ("opt-out"); 10 percent
permit only those students whose parents have signed a permission form to
receive condoms ("opt-in") (The Facts, School Condom Availability,
Advocates for Youth, February 1998).
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RAND Corporation
conducted a study of condom distribution at a Los Angeles high school and
found that distributing free condoms resulted in an increase from 37
percent to 50 percent in condom use among sexually experienced males. The
study also found that the number of students having sex remained constant
(Los Angeles Times, April 14, 1998).
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Training in safe sex
practices, including proper condom use, significantly reduces the spread
of HIV, according to a study conducted by the National Institutes of
Health. In the largest controlled study in the United States to evaluate
methods to modify sexual behavior, the research showed that the use of
condoms increased from zero to 42 percent in the group assigned to guided
group discussion on safer sex that included instruction on condom use (AP,
June 18, 1998).
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Safer Choices, a
school-based HIV prevention program, was evaluated by the CDC using
schools in California and Texas. Sexually active students attending the 10
schools that implemented the multi-faceted program were more likely to
report fewer acts of unprotected intercourse and increased use of HIV
prevention methods than students attending the 10 schools with other HIV
prevention curricula ("Research Shows Critical Need for Comprehensive HIV
Prevention Programs for Teens: Schools Should Enlist the Help of Parents
and the Community," CDC, June 29, 1998).
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The 3rd U.S. Circuit
Court of Appeals found that condom distribution is a legitimate part of a
school board's responsibility to provide students information about
adolescent reproductive health issues. In the July 9, 1998, ruling, Judge
Myron Bright rejected arguments by a group of Philadelphia parents that
condom availability endangered children or coerced or compelled them in a
manner that violates the rights of parents or family privacy. Currently,
condom availability programs exist in nine Philadelphia schools and
parents have an "opt-out" provision ("School Health Professional," July
27, 1998).
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In the first major
study of abstinence versus safer sex education for African American
adolescents, researchers found that, although abstinence education was
effective for a short period of time among those youth not sexually active
at baseline, over the long term no differences in reports of having sexual
intercourse were observed between abstinence versus safer sex groups.
Moreover, those who received safer sex education were more likely to
report consistent condom use and less unprotected sex. The study found
that 12 months after receiving one of three types of health education
instruction, 20 percent of the students obtaining abstinence education
were having sex versus 16.5 percent of students receiving condom use
instruction. The abstinence group also reported having more unprotected
sex than the condom group (JAMA, May 20, 1998).
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Several studies have
shown that some women may not be aware of the ineffectiveness of various
contraceptive methods in preventing sexually transmitted diseases or HIV
infection. These studies have found that condom use is lower among women
who believe they are preventing pregnancies without condoms. One study of
women at high risk for sexually transmitted diseases or HIV found that
more than half of them reported not using a condom with a main partner and
one-third reported not using a condom with a casual partner (MMWR,
Sept. 27, 1996).
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Cultural issues can
present barriers to condom use. One survey found that Latin American women
in this country who were less acculturated to mainstream U.S. culture were
less likely than other Latinos to use condoms. Another study found that
African American men are more likely to believe that condoms are
ineffective than white or Latin American men are. However, 85 percent of
women surveyed in another study, most of whom were African American, had
not experienced objections to condom use by their current partners
("Obstacles to Condom Use," Perspectives, March 1997; "Women at
Risk of HIV/STD: The Importance of Male Partners as Barriers to Condom
Use," AIDS and Behavior, 1998).
Confidentiality
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HIV/AIDS data can be
classified in a law as a communicable disease, a sexually transmitted
disease, or the data may be protected under specific statutes relating
only to HIV/AIDS. Forty-three states have general public health laws that
provide statutory protection for sexually transmitted disease data
maintained by a governmental agency, and 42 states have specific
protections for communicable disease information. A majority of states
have laws that specifically exempt medical records from public inspection
(JAMA, June 26, 1996; NCSL, 1997 and 1998).
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Forty-nine states
have HIV-specific confidentiality laws providing protection of health
information. These laws also allow for disclosure of HIV-related
information in certain circumstances. The most frequently cited reasons to
disclose data include for statistical analyses (42 states), for contact
tracing of potentially exposed individuals (39 states), for partner
notification (37 states), for epidemiological research (22 states), and
for subpoena or court order (14 states). There is great variability in
what specific information may be disclosed, under what circumstances, and
to whom the data may be released (JAMA, June 26, 1996; NCSL, 1997
and 1998).
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Most states impose a
duty on physicians and health care institutions to maintain the
confidentiality of medical records. About half the states extend this duty
to other health care providers. Only four states have specific legislation
imposing the duty on insurance companies, and few states impose a similar
duty on employers or other non-health care institutions. Fewer than half
the states have specific laws imposing a duty to maintain confidentiality
of electronic or computerized medical records ("Legislative Survey of
State Confidentiality Laws," ARG, September 1995).
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In 1998, Maine passed
legislation (H 1225) to establish safeguards for enhancing the
confidentiality of health care information. However, the law also removed
the requirement that HIV information be treated differently from other
health information. A 1998 Florida law makes it a third-degree felony to
disseminate, for malicious purposes, any information that identifies a
person as having HIV, AIDS or a sexually transmitted disease (NCSL, 1998;
APL, Jan. 22, 1999).
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As outlined in The
Health Insurance Portability and Accountability Act (HIPPA) of 1996, the
U.S. Congress is under a self-imposed deadline to pass federal medical
privacy legislation. If Congress fails to act by August 21, 1999, the
secretary of Health and Human Services must issue regulations by February
2000. Whether the federal legislation will preempt state statutes remains
an area of contention. A bill introduced but not passed in the 105th
Congress by Senators Jeffords (R-Vt.) and Dodds (D-Conn.) would have
exempted state HIV/AIDS confidentiality legislation from the coverage of
the federal act ("About the Health Privacy Project," Institute for Health
Care Research and Policy, Georgetown University, 1999).
Correctional System
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At year-end 1995, 2.3
percent of inmates in federal and state prisons, or 24,226 people, were
known to be infected with HIV. As of June 1993, 6,711 local jail inmates
were infected with HIV and 1,888 had AIDS ("HIV in Prisons and Jails,
1995," Bureau of Justice Statistics Bulletin, August 1997).
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By the end of 1995,
2.3 percent of men and 4 percent of women state prison inmates were known
to be infected with HIV. In all regions, female inmates had higher rates
of infection than male inmates. The states with the highest percentage of
female inmates with HIV were New York (22.7 percent), Rhode Island (14.5
percent), Connecticut (13.4 percent), New Hampshire (11.4 percent) and
Massachusetts (10.5 percent) ("HIV in Prisons and Jails, 1995," Bureau
of Justice Statistics Bulletin, August 1997).
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Each of the following
eleven states-California, Connecticut, Florida, Georgia, Illinois,
Maryland, New York, New Jersey, North Carolina, Pennsylvania and
Texas-reported more than 500 inmates with HIV at the end of 1995. New York
had 9,500 inmates with HIV, followed by Florida with 2,193 HIV-infected
inmates. The states with the highest percentage of inmate populations with
HIV were New York, 13.9 percent; Connecticut, 5.1 percent; Rhode Island,
4.4 percent; Massachusetts, 3.9 percent; and New Jersey, 3.7 percent ("HIV
in Prisons and Jails, 1995," Bureau of Justice Statistics Bulletin,
August 1997).
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The percentage of
prisoners infected with HIV was highest in the Northeast (7.8 percent of
all state prisoners in that region), followed by the South (1.9 percent),
the Midwest (0.9 percent) and the West (0.8 percent) ("HIV in Prisons and
Jails, 1995," Bureau of Justice Statistics Bulletin, August 1997).
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Two states-New York
and Florida-reported nearly half of the known cases of HIV in prison ("HIV
in Prisons and Jails, 1995," Bureau of Justice Statistics Bulletin,
August 1997).
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At least 12
states-Alabama, Georgia, Iowa, Louisiana, Michigan, Nevada, North Dakota,
South Carolina, Texas, Utah, Virginia and Wyoming-have laws that allow for
the isolation or segregation of HIV-infected inmates. Rhode Island enacted
legislation in 1998 stating that no inmate can be segregated based solely
on his or her condition. Alabama and Mississippi segregate HIV-positive
prisoners. The Illinois Department of Corrections considered this policy
in 1997 after issues were raised in a publicized trial concerning an
inmate who claimed he contracted the virus after being raped by a cell
mate. Some legal experts believe that such laws may violate the Americans
with Disability Act and the Rehabilitation Act (NCSL, 1998; APL,
September 19, 1997; APC, September 1995 ).
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Medical parole, also
called early and compassionate release, allows inmates with terminal
illnesses to have time with their families before they die and to receive
better services for their HIV disease. It also saves correctional
departments significant expenditures for medical care. Inmates with
certain offenses- such as first-degree murder or inmates under death
sentences-often are exceptions. Inmates have been released on the basis of
AIDS in California, Colorado, New Jersey and Virginia (A Summary of
HIV/AIDS Laws from 1992, APC, January 1993; 1992 Update: HIV/AIDS in
Correctional Facilities, January 1994).
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At least eight
states-California, Connecticut, Louisiana, Michigan, Montana, New York,
South Carolina and Texas-allow medical parole of inmates suffering from
terminal conditions or diseases that debilitate or incapacitate them to
the point that they will not be a danger to society (APL, Dec. 26,
1997; A Summary of HIV/AIDS Laws from 1992, APC, January 1993; 1992
Update: HIV/AIDS in Correctional Facilities, January 1994).
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AIDS is seven times
more common among inmates than in the U.S. population as a whole. Even so,
AIDS experts feel the issue has been ignored by most correctional
institutions resulting in the rapid spread of the infection to prisoners'
sex partners and children. Two jails-one in San Francisco and one in
Harris County, Texas-offer bleach to clean injection drug equipment. Two
state prisons-Vermont and Mississippi-and four city jails offer condoms.
AIDS experts claim that inmates who inject drugs and are not given proper
medical treatment often share needles in order to continue their addiction
(APL, April 4, 1997).
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A survey conducted by
the CDC and the Department of Justice found that treating prisoners for
HIV and other sexually transmitted diseases protects public health because
most inmates return to the community. The survey found only a few joint
efforts between correctional systems and pubic health agencies to
coordinate health care after the release of an inmate (Reuters,
Aug. 6, 1998).
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Several states have
reported that fewer inmates are dying of AIDS than in the past. In
Illinois, 1997 marked the first year since 1994 that AIDS was not listed
as the main cause of death among inmates. The New York Department of
Correctional Services reported that the number of AIDS-related prison
deaths fell to a 14-year low in 1997. The decline in deaths in New
York-from 35 in 1994 to 16 in 199- and in Illinois-from 258 in 1995 to 60
in 1997-is said to be related to a concerted effort to prescribe protease
inhibitors to inmates. In the first seven months of 1998, state prisons
spent $2.5 million on AIDS drugs (NYT, Aug. 19, 1998).
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Advocates for
prisoner rights in California have criticized the state correctional
system for the lack of health care for HIV-positive inmates. One
HIV-positive inmate recounted his experiences by citing the shortage of
trained staff and the incomplete and inconsistent administration of drugs.
Prison officials disagree with this assessment, claiming that the
California prison system has one of the best hospice systems of any prison
in the nation, and that the state operates three HIV medical units.
California was one of the first states to offer protease inhibitors to
inmates. Estimates of the number of HIV-positive inmates in California
range from 1,500 to nearly 10,000 (Examiner, Aug. 1, 1998; APL,
April 4, 1997).
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The federal prison
system and 18 state prison systems-Alabama, Colorado, Georgia, Idaho,
Iowa, Michigan, Mississippi, Missouri, Nebraska, Nevada, New Hampshire,
North Dakota, Oklahoma, Rhode Island, South Carolina, Texas, Utah and
Wyoming-test all inmates for HIV upon admission and/or release. In
addition, Rhode Island, Utah and Wyoming test all inmates at various times
during their incarceration. Massachusetts, New York and the Federal Bureau
of Prisons conduct random sample testing of inmates ("HIV in Prisons and
Jails, 1995," Bureau of Justice Statistics Bulletin, August 1997;
AP, July 29, 1998; APL, Aug. 21, 1998).
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Twenty-four states
test prisoners for HIV if they expose corrections officers or others to
body fluid. The 1998 Oklahoma corrections officer exposure law offers no
definition of what constitutes a significant exposure. The 1997 Washington
law limits the disclosure of a positive test result to the officer
involved and health care administrators or infection control coordinators
in state and local correctional facilities ("HIV in Prisons and Jails,
1995," Bureau of Justice Statistics Bulletin, August 1997; AP,
July 29, 1998, APL, Dec. 26, 1997, Aug. 21, 1998, and Jan. 22,
1999; NCSL, 1997 and 1998).
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Fifteen states test
inmates who belong to high-risk groups; 38 states and the federal prison
system require testing of inmates who develop clinical symptoms of HIV.
Eighty-seven percent of prison jurisdictions make HIV testing available to
all inmates on request ("HIV in Prisons and Jails, 1995," Bureau of
Justice Statistics Bulletin, August 1997; AP, July 29, 1998,
APL, Dec. 26, 1997, and Aug. 21, 1998; NCSL, 1997 and 1998).
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In 1998, Rhode Island
passed legislation stating that correctional staff must be informed of
risk factors and be provided emergency care if exposed to body fluids from
an inmate. Colorado and Rhode Island passed laws in 1997 bringing criminal
penalties to inmates who are charged with throwing human waste at
correctional officers (APL, Dec. 26, 1997; NCSL, 1997 and 1998).
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A 1997 Arkansas law
requires correctional institutions to notify probation and parole officers
of an inmate's HIV-status (APL, Dec. 26, 1997).
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The federal
Correctional Officers Health and Safety Act of 1998 (HR 2070, P.L.105-370)
was signed into law in November. The law requires federal inmates to be
tested for HIV after the commencement of incarceration if they are serving
a minimum of six months time and are determined to be at risk for
infection. Although the law provides essentially no change from existing
Bureau of Prison policy, it does require, for the first time that the
attorney general, in consultation with the secretary of health and human
services, offer advice to states on how to detect prevent and treat HIV
infection. The new law also requires tests for inmates who expose
corrections officers or others to body fluids. Results of the test, if
positive, are to be communicated to the person tested and to the
correction facility administrator (APL, Aug. 21 and Nov. 27, 1998;
Miami Herald, Sept. 5, 1998; Newsday Online, Oct. 21, 1998).
Criminal Penalties
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At least 30 states
make it a criminal offense to knowingly or willfully expose or transmit
HIV infection. Eleven states-California, Idaho, Indiana, Louisiana,
Maryland, Minnesota, Missouri, Montana, Nevada, Oklahoma and
Washington-have broad definitions of knowing or willful transmission.
Twenty-two states-Alabama, Arkansas, California, Florida, Georgia, Idaho,
Illinois, Indiana, Iowa, Kansas, Louisiana, Michigan, Minnesota, Missouri,
New Jersey, North Dakota, Ohio, Oklahoma, South Carolina Tennessee,
Washington and Wisconsin-specifically mention within their statutes
penalties for sexual transmission or exposure to an individual to the
virus through body fluids or tissues. Ten states-Colorado, Florida,
Georgia, Louisiana, Nevada, Ohio, Oklahoma, South Carolina, Tennessee and
Utah-have laws that penalize those who engage in prostitution while
HIV-infected and three states-Colorado, Kentucky and Utah-make it a crime
to solicit a prostitute if the solicitor is HIV-infected ("Criminal
Penalties," Issue Brief, NCSL, 1998; APL, Dec. 26, 1997, and
Jan. 22, 1999).
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Fifteen
states-Florida, Georgia, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky,
Minnesota, Missouri, North Dakota, Oklahoma, South Carolina, Tennessee and
Virginia-have penalties for those who attempt to sell or donate
HIV-infected blood with the intent to transmit the virus ("Criminal
Penalties," Issue Brief, NCSL, 1998).
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Twelve
states-Florida, Georgia, Idaho, Illinois, Indiana, Iowa, Kansas,
Minnesota, North Dakota, Ohio, South Carolina and Tennessee-explicitly
state that anyone selling or exchanging non-sterile equipment for
injecting drugs is subject to criminal penalties ("Criminal Penalties,"
Issue Brief, NCSL, 1998).
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Three
states-Colorado, Louisiana and Pennsylvania-have penalties for deliberate
attempts to transmit HIV while incarcerated. The Pennsylvania law (S 635),
passed in 1998, charges the offender with murder in the second degree
("Criminal Penalties," Issue Brief, NCSL, 1998).
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Two highly publicized
cases in New York and Missouri, each involving an HIV-positive individual
who spread the infection to numerous unsuspecting partners, spurred a
flurry of legislative activity in 1997 and 1998. California, Florida,
Iowa, New Jersey, Missouri and Wisconsin imposed felony penalties and/or
longer jail terms against those who intentionally expose another person to
HIV without his or her consent. Washington's law raised the penalty from a
second-degree to a first-degree assault, but continued the requirement for
prosecutors to prove there was criminal intent to transmit the virus (APL,
Dec. 26, 1997, and Jan. 22, 1999).
Discrimination
-
The Americans with
Disabilities Act (ADA), most of which took effect in 1992, prevents
discrimination against an individual with a disability or an individual
regarded as having such an impairment. People with HIV or AIDS are
specifically included as "people with disabilities." The act guarantees
equal opportunity for people with disabilities in public accommodations,
employment, transportation, state and local government services, and
telecommunications. The employment section requires employers to make
"reasonable accommodations" unless doing so would impose an "undue
hardship on the business operations." Discrimination is allowed by the ADA
if the individual with HIV is proven to pose a direct threat to the health
and safety of others (The Americans with Disabilities Act: Questions
and Answers, U.S. Dept. of Justice, September 1992; The Americans
with Disabilities Act: From Policy to Practice, 1991).
-
According to a
recently released 50-state survey on discrimination laws, 40 states have
laws that incorporate the federal definition of disability, eight states
have laws with broader definitions of disability, 14 states have
HIV-specific language in their laws, and 12 states limit the use of HIV
testing or test results. In 1997, Texas amended an existing
antidiscrimination law to allow HIV-positive employees the right to file
claims for disability discrimination (NCSL, 1997). JAMA. Feb. 24,
1999 as cited in Kaiser Daily HIV/AIDS Report, Feb. 24, 1999).
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In a landmark ruling,
the U.S. Supreme Court decided that people with HIV infection can be
covered under the Americans with Disability Act even if they have no
symptoms of illness. The ruling on June 25, 1998 in Bragdon vs. Abbott
held that dental patient Sidney Abbott was disabled, and therefore was
discriminated against by her dentist when she was refused treatment. Her
decision not to have children because of her HIV status brought her under
the ADA's definition of disability. Reproduction is considered a major
life activity, and because she had an impairment that substantially
limited this life activity, she was considered disabled (APL, July
24, 1998).
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At least 23
states-Arkansas, California, Colorado, Florida, Hawaii, Illinois, Iowa,
Kansas, Kentucky, Maine, Maryland, Missouri, Montana, North Carolina,
Nebraska, New Mexico, Ohio, Rhode Island, Vermont, Virginia, West
Virginia, Wisconsin and Wyoming-have passed laws prohibiting
discrimination in the access to or provision of health services. A 1994
Maryland law prohibits emergency health workers from refusing to treat or
transport someone because of his or her HIV status (APC, February
1992; A Summary of HIV/AIDS Laws from 1994, APC, January
1995; Lexis/Nexis Search, Dec. 18, 1998).
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Seven
states-California, Colorado, Florida, Kentucky, Ohio, Pennsylvania and
Vermont-and the District of Columbia prohibit discrimination in insurance
based on sexual orientation. The laws prohibit insurers from using sexual
orientation to make underwriting decisions or to determine who will be
tested for HIV. In 1997, New Hampshire added sexual orientation to its
existing human rights law. (Changing Faces, Changing Directions, APC,
May 1995; "1997 Legislative Report," ACLU, 1997; Lexis/Nexis
Search, Dec. 18, 1998).
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Since the American
with Disabilities Act took effect in 1992, the U.S. Equal Employment
Opportunity Commission (EEOC) has received 1,600 claims of employment
discrimination involving HIV. This number represents about 1.8 percent of
all ADA complaints (APL, Sept. 4, 1998).
Guardianship/Foster Care/Adoption
-
By the year 2000,
between 72,000 and 125,000 children and teenagers in the United States
will have lost their mothers to HIV and AIDS. The large majority of the
children are not HIV infected but are at high risk for a range of
behavioral and developmental problems. At least 80 percent of them come
from poor communities of color. The hardest hit cities are New York City,
Newark, Miami, San Juan, Los Angeles and Washington, D.C. (Orphans of
the HIV Epidemic: Unmet Needs in Six U.S. Cities, The Orphan Project,
1994).
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At least 18
states-California, Connecticut, Florida, Illinois, Iowa, Kansas, Maryland,
Massachusetts, Nebraska, New Jersey, New York, North Carolina, Ohio,
Pennsylvania, Virginia, Washington, Wisconsin and Wyoming-have laws that
allow parents to appoint standby guardians for their children. These laws
enhance the ability of parents with AIDS to plan for the care of their
children. The guardian's authority takes effect upon the parent's
incapacity, debilitation, death or consent. Parents can give up custody
for the periods they are incapacitated but resume it when they are able to
do so. California allows a terminally ill parent to name another person to
share guardianship of his or her child. (Lisa Merkel-Holguin, American
Humane Association, September 1995; National Women and HIV/AIDS
Project, June 1995; NCSL, 1998; Karen Pope, National Council for
Adoption, 1998).
-
At least 10
states-Arizona, California, Colorado, Hawaii, Illinois, Louisiana, New
York, North Dakota, Texas and Wisconsin-have enacted foster care and or
adoption-related laws relating to HIV infected children. These laws focus
on HIV testing issues, confidentiality provisions, disclosure of the HIV
test results to potential foster care or adopted parents, and provision of
services, among other issues (Changing Faces, Changing Directions,
APC, May 1995; APL, January 1997).
-
In 1997, federal
legislation was passed encouraging states to enact standby guardianship
laws ("Public Law 105-89," Nov. 19, 1997).
Health Care Workers
-
As of Dec. 31, 1997,
20,242 (or 5.1 percent) of the AIDS cases reported to the CDC were people
employed in health care; 75 percent of these people have died. The
specific occupations are 1,617 physicians, 106 surgeons, 4,509 nurses, 437
dental workers, 385 paramedics, 2,698 technicians, 951 therapists, and
4,256 health aides. The rest are maintenance workers, administrative staff
and others ("Reported Cases of AIDS and HIV Infection in Health Care
Workers," CDC, June 1, 1998).
-
The CDC knows of 54
health care workers in the United States who have been documented as
becoming infected with HIV through occupational exposure, including 25 who
have developed AIDS. The 54 health care workers include 19 laboratory
workers, 22 nurses, six physicians, two surgical technicians, one dialysis
technician, one respiratory therapist, one health aide, one
embalmer/morgue technician, and one housekeeper/maintenance worker.
Forty-six of the health workers were infected through exposure to HIV
through a puncture or cut, five through mucous membrane or skin exposure
and two through both mucous membranes and a cut; one had an unknown route
of exposure. Forty-nine were exposed to HIV-infected blood, three to
concentrated virus in the laboratory, one to bloody fluid and one to an
unspecified fluid. Another 132 health workers were most likely infected
through occupational exposure; however, their HIV infection after exposure
was not documented ("Reported Cases of AIDS and HIV Infection in Health
Care Workers," CDC, June 1, 1998).
-
There is only one
demonstrated incident of patients being infected by a health care worker-a
dentist infected six patients. It is not clear how the patients were
infected. More than 22,000 patients of 63 HIV-infected doctors and
dentists have been investigated with no other cases of transmission
attributed to medical or dental procedures (Facts About HIV, CDC,
May 1994; JAMA, April 6, 1994).
-
A 1998 California law
requires health-care workers to use needleless systems or safety needles.
This law is a first of its kind in the country and attempts to protect the
100,000 workers each year in California at risk for blood-borne infections
from needle sticks (APL, Jan. 22, 1999).
-
In 1998, the CDC
updated its guidelines for the management of health-care workers who have
occupational exposure to blood and body fluids that may contain HIV.
Post-exposure prophylaxis (PEP) is an intervention aimed at treating a
person who has been exposed to HIV with antiretrovirals during the brief
"window of opportunity" after exposure but before viral replication
begins. The CDC recommends that PEP be initiated as soon as possible, if
warranted, and should include a four-week course of two older classes of
AIDS drugs, with the addition of a protease inhibitor for exposures that
pose an increased risk for transmission or where resistance to one or more
of the antiretroviral agents recommended is known or suspected. The
decision to initiate PEP must take into account such factors as the amount
of blood involved in the exposure, pregnancy of the health care worker,
exposure to drug resistant virus, and the infectivity of the exposure
source (MMWR, May 15, 1998).
-
At least 17
states-California, Florida, Hawaii, Iowa, Illinois, Indiana, Louisiana,
Maryland, Minnesota, Mississippi, Missouri, New Hampshire, New York, Ohio,
Oklahoma, South Carolina and Texas-have passed legislation to protect
patients from HIV-infected health care workers. (Intergovernmental AIDS
Reports, June 1992; A Summary of HIV/AIDS Laws, APC,
January 1993, January 1994, and January 1995; NCSL, 1997 and 1998).
-
At least nine
states-Iowa, Minnesota, Missouri, Nebraska, New Hampshire, New York,
Oklahoma, South Carolina and Texas-have laws that establish expert review
panels to determine on a case-by-case basis the circumstances, if any, in
which an HIV-infected health worker may perform exposure-prone procedures.
New York's panel evaluates and advises infected workers who voluntarily
seek the panel's review. Hawaii and Indiana enacted laws in 1994 to
authorize establishment of expert review panels to provide consultation
and advice to HIV-infected health care workers (Intergovernmental AIDS
Reports, June 1992; A Summary of HIV/AIDS Laws, APC, January
1993, 1994 and 1995; NCSL, 1998).
-
At least 23
states-Arkansas, California, Delaware, Florida, Iowa, Idaho, Indiana,
Kentucky, Maryland, Michigan, Minnesota, Missouri, New Hampshire, New
Jersey, New York, Nevada, Ohio, Oklahoma, South Carolina, Tennessee,
Texas, Virginia and Washington-authorize or mandate HIV/AIDS education and
training for certain health care workers. Laws in Colorado, Illinois and
Maine promote provider education. In 1996, New Mexico established a task
force to study mandatory HIV training and education for health care
providers. In 1998, Florida expanded the provider curriculum requirements
to include training in partner notification and counseling and testing of
pregnant women (APC Summaries, February 1991;
Intergovernmental AIDS Reports, APC, March 1993; A Summary of
HIV/AIDS Laws from 1993, APC, January 1994; "An Overview of 1995 State
Legislative Activity, IHPP, Dec. 15, 1995; State Net Search, 1996; APL,
Jan. 22, 1999).
Informed Consent for HIV Testing and Exceptions
-
Since 1985, when the
first HIV antibody test became available, doctors have been required to
conduct extensive pretest counseling covering the medical and emotional
consequences of testing positive. This counseling, which is some cases is
mandated by state law, may take 15 minutes or more and usually requires
the patient to sign a consent form confirming that he or she received the
counseling before blood was drawn. Such extensive precounseling
requirements were developed from the realization that not only was no cure
available for AIDS, but also that treatment options were limited. The
counseling was perceived as a layer of protection against involuntary
testing that health experts and policymakers generally viewed as
unacceptable (Washington Post, Oct. 15, 1998).
-
At least 38 states
require informed consent prior to HIV testing. Increasingly, states have
made exceptions to informed consent provisions. In 1997 and 1998, for
example, California, Connecticut, Florida, Tennessee and West Virginia
enacted legislation involving exemptions from requiring informed consent
prior to testing. Some examples of situations where the laws allow
exemptions include when the patient refuses to consent but blood or other
samples are already available; when the patient is incapable of giving
consent, or when the patient dies; medical emergencies involving
significant exposure to medical personnel; and the testing of inmates. A
Connecticut law passed in 1997 eliminated the need for repeatedly
obtaining informed consent every time a doctor performs testing for
medical monitoring. A 1997 Montana law allows physicians to obtain oral
versus written consent (Intergovernmental AIDS Reports, APC, April
1993; A Summary of HIV/AIDS Laws, APC, January 1994 and January
1995; NCSL, 1997 and 1998).
-
Twenty-one
states-Arkansas, California, Colorado, Delaware, Florida, Hawaii, Idaho,
Iowa, Illinois, Louisiana, Michigan, Missouri, Nebraska, North Dakota, New
Mexico, South Dakota, Tennessee, Texas, West Virginia, Wisconsin and
Wyoming-do not require consent to test patients who may have exposed a
health care worker, emergency personnel or law enforcement officer to HIV;
16 states-Arkansas, California, Kentucky, Maine, Michigan, New York, North
Dakota, Ohio, Oregon, South Dakota, Tennessee, Utah, Virginia, Washington,
Wisconsin and Wyoming-require or allow a court order if consent has not
been given. Twelve states-California, Connecticut, Florida, Iowa,
Louisiana, Montana, Nebraska, North Dakota, Pennsylvania, Rhode Island,
Virginia and Wyoming-allow testing of previously obtained blood if there
was a significant exposure. (Intergovernmental AIDS Reports, APC,
October 1992; A Summary of HIV/AIDS Laws, APC, January 1994 and
January 1995; "An Overview of 1995 State Legislative Activity," IHPP, Dec.
15, 1995; APL, January 1997; NCSL, 1997 and 1998).
-
If consent cannot be
obtained, HIV testing of patients in cases of medical emergencies is
allowed in at least 18 states-Arkansas, Connecticut, Delaware, Florida,
Hawaii, Idaho, Iowa, Kentucky, Michigan, Montana, New Hampshire, New
Mexico, North Dakota, North Carolina, Ohio, Pennsylvania, Rhode Island and
West Virginia-for treatment purposes or if there is a threat to public
health. A 1998 West Virginia law requires that patient testing in medical
emergencies be done through a pseudonym to protect confidentiality if the
patient is unable or unwilling to consent (Intergovernmental AIDS
Reports, APC, October 1992; A Summary of HIV/AIDS Laws from 1993,
APC, January 1994; Changing Faces, Changing Directions, APC, May
1995; APL, Jan. 22, 1999).
-
All 50 states allow
minors to consent to STD and HIV services. Eleven states-California,
Colorado, Connecticut, Delaware, Iowa, Michigan, Montana, New Mexico, New
York, Ohio and Rhode Island-have laws that explicitly authorize minors to
consent to HIV testing and treatment. Eighteen states-Alabama, Florida,
Georgia, Idaho, Illinois, Kentucky, Mississippi, Nevada, North Carolina,
Oklahoma, Oregon, Pennsylvania, Tennessee, Texas, Vermont, Virginia,
Washington and Wyoming-officially classify HIV/AIDS as a STD or infectious
disease for which minors may consent to services. An Iowa law requires a
parent to be notified if an HIV test is positive. In 16 states, a doctor
may notify parents of the minor's consent to testing or treatment
("Teenagers' Right to Consent To Reproductive Health Care," Alan
Guttmacher Institute, 1997).
-
Virginia passed
several laws in 1997 concerning HIV testing and informed consent.
Witnesses and bystanders at crime scenes were given the right to demand
testing if they were exposed to body fluids. Further, a person who exposes
a law enforcement officer to body fluids in a manner that could transmit
HIV or hepatitis B or C must consent to testing. Finally, law enforcement
officers who expose others to body fluids also must be tested (APL,
Dec. 26, 1997).
-
In 1997, North Dakota
passed legislation allowing a judge to confine a person for up to five
days without a hearing if the defendant significantly exposes a police
officer, firefighter, paramedic or health worker to blood or other body
fluids. Exposure is defined as contact with broken skin or mucous
membranes. Since 1995, North Dakota courts could order a defendant to
submit to HIV testing if he or she caused a significant exposure of blood
or body fluids to an emergency worker. The controversial law was passed to
halt defendants from leaving a jurisdiction before undergoing testing (APL,
Dec. 26, 1997).
Needle Exchange and Access to Sterile Syringes
-
Fourteen
states-Alaska, Connecticut, Hawaii, Illinois, Maine, Maryland,
Massachusetts, Minnesota, New Hampshire (pilot project), New Mexico, New
York, Oregon, Rhode Island and Washington-and the District of Columbia
authorize needle exchange programs. These states differ in their approach
to sanctioning needle exchanges. Most have passed laws authorizing their
operation. A small number of states have elected to remove legal barriers
to needle exchanges without formally authorizing programs (by amending
drug paraphernalia laws to exempt needles and syringes, or by repealing
needle prescription laws). In New York, for example, the health
commissioner is given authority to waive needle prescription laws ("Needle
Exchange and Access to Sterile Syringes," Issue Brief, NCSL, Aug.
14, 1998)
-
According to the
North American Syringe Exchange Network, 134 needle exchange programs
operate in 34 states, the District of Columbia and Puerto Rico. However,
the exact number is difficult to pinpoint because, not all operations are
sanctioned by authorities. Many of the programs operate with limited
general public knowledge ("Needle Exchange and Access to Sterile
Syringes," Issue Brief, NCSL, Aug. 14, 1998).
-
The National
Institutes of Health (NIH) published a study on needle exchange programs
in March 1997. The report concluded that the programs "show a reduction in
risk behaviors as high as 80 percent in injecting drug users, with
estimates of a 30 percent or greater reduction of HIV." The report also
found either a decrease in injection drug use among participants or no
changes in their current drug use. In October 1997, a study of needle
exchange programs in Baltimore, Maryland, found that participants in the
needle exchange programs that were closely linked or integrated with drug
treatment programs, had high levels of retention in drug treatment
programs (Consensus Development Statement on Interventions to Prevent
HIV Risk Behaviors, NIH, March 1997 as cited in "Needle Exchange and
Access to Sterile Syringes," Issue Brief, NCSL, Aug. 14, 1998).
-
One study, conducted
in Vancouver, British Columbia, and published in 1997, found that
participants in needle exchanges were two to three times more likely to
become infected with HIV than were nonparticipants. The study also showed
that 40 percent of participants continued to frequently share needles. A
second study, published in 1996, found that participants from Montreal,
Quebec, were more than twice as likely to become infected with HIV as were
nonparticipants, and that a majority of program clients continued to share
needles (Addiction, October 1997; American Journal of
Epidemiology, December 1997).
-
Julie Bruneau and
Martin T. Schechter, authors of the Canadian needle exchange studies,
published a letter to the editor in the New York Times claiming
that the results of their studies had been misinterpreted. Although they
agreed that addicts who took part in needle exchange programs in Vancouver
and Montreal had higher HIV infection rates than addicts who did not
participate, the researchers cited additional reasons for their increased
risk. The populations that were served by these programs were from inner
cities and therefore were less likely to be able to afford to buy their
own needles and were more likely to engage in the riskiest behavior.
Although the two programs exchanged over 1.5 million needles annually, the
researchers calculated that a total of 20 million needles would need to be
exchanged to meet the needs of the population and prevent re-use of
syringes (NYT, April 9, 1998).
-
A 1995 study by the
Chemical Dependency Institute at Beth Israel Medical Center found that the
average annual budget of a needle exchange program was $131,000. Other
estimates are higher, averaging $160,000 annually. These programs are
considered to be cost-effective. (APL, Feb. 21, 1997, as cited in
"Needle Exchange and Access to Sterile Syringes," Issue Brief, NCSL,
Aug. 14, 1998).
-
In April 1998, the
Clinton administration refused to authorize federal funds to support the
operation of needle exchange programs. The administration acknowledged the
scientific evidence that such programs stem the spread of HIV without
encouraging drug use; however, they deferred the decision of funding and
implementation to local communities. The announcement came days before the
U.S. House of Representatives voted to permanently ban federal funding for
the program. In the District of Columbia, an independent nonprofit group
will run the city's needle exchange program using only private funding. To
operate, the program required authorization from the city, which was
provided by the D.C. Corporation Counsel. The program, which distributes
17,000 needles each month, previously was funded by the D.C. AIDS
Administration ("Needle Exchange and Access to Sterile Syringes," Issue
Brief, NCSL, Aug. 14, 1998; Washington Post, Dec. 2 and 4,
1998).
-
Maryland considered a
number of needle exchange bills during the 1998 session after its 1997
vote to allow Baltimore's pilot program to continue indefinitely. The
legislature ultimately approved legislation that sanctions needle
exchanges in Prince George's County. Under the legislation, the program
must refer clients to drug counseling and treatment services and educate
users about the dangers of contracting HIV from unsafe needle-sharing and
sex practices ("Needle Exchange and Access to Sterile Syringes," Issue
Brief, NCSL, Aug. 14, 1998).
-
Nearly half the
states have pharmacy regulations that restrict access to syringes. State
pharmacy regulatory bodies establish pharmacy regulations or practice
guidelines regulating the sale of syringes. These agencies do not have the
force of law, but noncompliance could cause a pharmacist to be subjected
to professional sanctions ("Needle Exchange and Access to Sterile
Syringes," Issue Brief, NCSL, Aug. 14, 1998).
-
Current drug
paraphernalia laws that "prohibit the sale, distribution and/or possession
of syringes known to be used to introduce illicit drugs into the body" are
considered by needle exchange supporters to present major barriers to
access to clean needles for drug users. These laws exist in 47 states and
the District of Columbia. At least seven states-Hawaii, Maine, Maryland,
Massachusetts, New York, Rhode Island and Washington-and the District of
Columbia provide exceptions in their drug paraphernalia laws for needle
exchange programs. A 1997 Minnesota law redefined "drug paraphernalia" to
exclude hypodermic needles (Emory Law Journal, Spring 1997, as
cited in Needle Exchange and Access to Sterile Syringes," Issue Brief,
NCSL, Aug. 14, 1998).
-
Eight states and one
territory (California, Delaware, Illinois, Massachusetts, New Hampshire,
New Jersey, New York, Rhode Island and the Virgin Islands) require
prescriptions to purchase hypodermic needles and syringes. Ten additional
states restrict the purchase of hypodermic needles and syringes without a
prescription. These restrictions may involve age requirements or limits on
the amounts of syringes purchased without a prescription. Six
states-Michigan, Nevada, Ohio, Texas, Virginia and Washington-permit the
sale of syringes without a prescription if a person has a legitimate
medical need. Only three states-Connecticut, Massachusetts and Rhode
Island-exempt needle exchange programs from syringe prescription laws. In
other states, regulations have had to be modified to allow the programs to
operate legally (Emory Law Journal, Spring 1997; "Needle Exchange
and Access to Sterile Syringes," Issue Brief, NCSL, Aug. 14, 1998).
-
When legal
restrictions on both the purchase and possession of syringes are removed,
injection drug users will change their syringe-buying practices and
syringe-sharing behaviors in ways that can reduce HIV transmission,
according to studies conducted by the CDC and the Connecticut Department
of Public Health. It was found that needle-sharing among drug users fell
39 percent after Connecticut passed a law (HB 5015, Act 185, 1992 Laws)
permitting pharmacies to sell syringes without a prescription and
legalizing the possession of syringes that are not contaminated with
illegal drugs. The studies found that 83 percent of the state's pharmacies
were selling nonprescription syringes, compared with none of the
pharmacies before the law was changed. Seventy-eight percent of drug users
surveyed had bought syringes from a pharmacy less than a year after the
law took effect. Of those who bought them from a pharmacy, 31 percent said
they had shared a needle, a sharp drop from the 52 percent who were
surveyed immediately after the laws took effect. Seventy-five percent of
Connecticut's AIDS cases are related to intravenous drug use (Journal
of Acquired Immune Deficiency Syndromes and Human Retrovirology, Sept.
1, 1995; Detroit Free Press, Aug. 31, 1995).
Newborn Testing
-
New York and Indiana
mandate routine HIV testing of newborns. The New York law requires health
officials to notify the parents of the results. The Indiana law, which
became effective July 1, 1998, allows doctors to test newborns if the
mother has not been tested, if the mother refused testing, and if testing
is believed to be medically necessary (NCSL, 1998).
-
California, Florida,
Iowa and Rhode Island have laws that provide for surveillance and testing
of newborns. California requires that the number of babies born with HIV,
drug dependencies and STDs be reported to the Legislature and governor
annually. Florida allows HIV testing of hospitalized infants when
necessary to provide medical care and when the parent cannot be contacted
to provide consent. Iowa authorizes the Department of Public Health to
conduct blind studies through HIV testing of newborns to determine the
prevalence of HIV. Rhode Island empowers the Department of Health to make
rules and regulations to mandate testing of newborns when there is a
strong medical suspicion that a child may have HIV and the doctor is
unable to obtain the mother's written consent (Changing Faces, Changing
Directions, APC, May 1995; HIV/AIDS Quarterly Report, APC, Oct.
27, 1995).
-
On May 11, 1995, the
CDC suspended the Survey of Childbearing Women. This also suspended the
blinded newborn HIV testing that was conducted in 45 states, the District
of Columbia, Puerto Rico and the Virgin Islands since 1988. The testing
tracked the HIV epidemic in women delivering infants. Results of the
survey were used to estimate the needs for HIV services, to stimulate
development of HIV prevention programs and to target resources. HIV
testing was conducted on leftover blood specimens that were drawn for
routine newborn screenings. All personally identifying information was
separated from the blood specimens, therefore making the results
unavailable. The CDC suspended the survey because it was felt that the $10
million cost for conducting the testing could be better used on efforts to
prevent perinatal transmission (Letter from James Curran, M.D., M.P.H, CDC
associate director for HIV/AIDS, May 12, 1995; CDC National AIDS
Hotline Training Bulletin #103, June 15, 1994).
-
The 1996 amendments
to Ryan White CARE Act had several provisions relating to perinatal
transmission of HIV: states must determine the rate of reported AIDS cases
resulting from prenatal transmission, the CDC must implement a reporting
system for tracking perinatal transmission AIDS cases, and the secretary
of HHS must determine whether it has become routine practice to conduct
mandatory HIV newborn testing of all infants whose mothers have not
undergone prenatal HIV testing. If it is determined that testing has
become routine, a state must demonstrate, by April 2000, one of three
measures to reduce transmission in order to receive Title II funding. The
three measures are: 1) a 50 percent reduction in the rate of new perinatal
transmission AIDS cases; 2) at least 95 percent of women who received at
least two prenatal visits have been tested for HIV; or 3) require HIV
testing of newborns whose mothers have not undergone HIV testing (NASTAD,
July 1998).
-
The National Academy
of Sciences' Institute of Medicine convened a panel of health experts to
study strategies for reducing perinatal HIV transmission in the United
States. In October 1998, the panel released its recommendations, stating
that HIV testing should be made part of the routine prenatal blood tests
given to pregnant women, and that HIV testing should not be contingent
upon the current requirements for extensive pretest counseling
(Reducing the Odds: Preventing Perinatal Transmission of HIV in the United
States, IOM, October 1998; Washington Post, Oct. 15, 1998).
-
According to the
National Association of State and Territorial AIDS Directors (NASTAD), it
has not become routine practice to conduct mandatory testing of all
infants whose mothers have not undergone prenatal HIV testing. The
secretary of Health and Human Services is expected to issue a final
determination in the near future on whether this practice has become
routine (NASTAD, July 1998).
-
The testing of
newborns and subsequent disclosure to mothers is considered by some legal
experts to be a form of mandatory testing by proxy without informed
consent or counseling requirements for all pregnant women. Other experts
note that privacy is not an absolute value, and concerns for the common
good justifies such testing (Health Affairs, July/August 1998 as
cited in HIV Update Aug. 31, 1998).
Notification
-
In 1988, the Centers
for Disease Control and Prevention mandated that, as a condition of
receiving HIV prevention funding, all state health departments establish
partner notification programs. In 1996, the reauthorization of the Ryan
White CARE Act required states to show "good faith efforts" in notifying a
spouse of someone known to be infected with HIV. "Duty to warn" statements
are included in some laws requiring health care workers to intervene
either directly or with the help of a health department in the rare
instance that all other efforts to notify a sex partner who is at
impending risk have failed. Each law, however, varies as to who may make
the contact, what is said and under what conditions ("Partner Notification
and HIV," Issue Brief, NCSL, July 13, 1998).
-
At least 32
states-Arizona, California, Connecticut, Florida, Georgia, Hawaii, Idaho,
Illinois, Indiana, Iowa, Kansas, Louisiana, Maryland, Michigan, Minnesota,
Missouri, Montana, Nebraska, New Hampshire, New Mexico, New York, North
Dakota, Ohio, Pennsylvania, Rhode Island, South Carolina, Texas, Utah,
Virginia, West Virginia, Wisconsin and Wyoming-have enacted
HIV/AIDS-specific partner notification laws that authorize a physician or
health officer, in accordance with health department regulations, to
notify the sexual or needle-sharing partner of a person with HIV that they
have been exposed to the virus. Delaware, New Jersey and the District of
Columbia require court orders, based on compelling need or clear and
compelling evidence, to disclose an HIV test result to a third party
("Partner Notification Programs," Issue Brief, NCSL, July 13, 1998;
"HIV Partner Notification: Why Coercion Won't Work," ACLU, March 1998).
-
Many of the remaining
states have laws mandating partner notification under general communicable
disease control efforts and/or laws authorizing the health department to
establish regulations for partner notification. Most of states require
that the identity of individuals be kept confidential and make health care
professionals immune from civil or criminal liability if notification is
made in good faith ("Partner Notification Programs," Issue Brief,
NCSL, July 13, 1998).
-
One study on the
effectiveness of partner notification services among 60 injection drug
users found that 82 percent of the study subjects who were HIV-positive
requested staff assistance with notifying at least one or more partners.
Another recent study found that four of every 10 HIV-positive patients
being treated at two New England hospitals failed to disclose their
condition to their sexual partners (Public Health, June 1998;
Archives of Internal Medicine, February 1998).
-
In 1998, New York
Governor George Pataki signed legislation mandating HIV partner
notification. According to the new law, doctors are required to report to
the health department the names of people with HIV and AIDS, as well as
the names, if available, of their contacts that may have been exposed to
HIV. Health officers must then notify these contacts about their potential
exposure. Iowa enacted a law in 1998 encouraging a person who has a
positive HIV test to refer for counseling and testing any person with whom
he or she has had sexual relations or shared intravenous equipment. The
doctor may provide any relevant information to the health department
("Partner Notification Programs," Issue Brief, NCSL, July 13,
1998).
-
In August 1998, U.S.
Representatives Gary Ackerman (D-N.Y.) and Tom Coburn (R-Okla.) introduced
HR 4431, the HIV Partner Protection Act. This bill, modeled after
legislation passed in New York earlier in the year, required states to
conduct HIV reporting and "past and present" partner notification as a
condition of receiving Ryan White funding. The bill, which was not passed,
allowed health care providers to disclose HIV information as long as they
acted "in good faith," and it authorized $10 million for state
implementation ("Legislative and Policy Update," ASTHO, Oct. 7, 1998).
-
Supporters of the HIV
Partner Protection Act claim that some state laws are not forceful enough
or are not uniformly implemented. Moreover, early diagnosis of HIV
infection is important because new drug treatments are allowing people to
live longer, healthier lives. Opponents of the legislation claim the law
would add a bureaucratic disincentive to HIV testing at a time when as
many as 300,000 HIV-positive people in the United States are unaware of
their status (The Kaiser Daily HIV/AIDS Report, Sept. 30, 1998;
"Coburn Plan is a Recipe for Reduced HIV Testing and Increased Infection,"
AIDS Action, Sept. 29, 1998; "Legislative and Policy Update," ASTHO, Oct.
7, 1998).
-
The former director
of the CDC, Dr. David Satcher, projected the national cost for partner
notification services in publicly funded settings to be close to $20
million. He also believed that "substantially more resources would be
required" if additional legislative requirements expanding the scope of
partner notification, such as those proposed in the bill, were enacted
(Letter to U.S. Representative Tom Coburn from Dr. David Satcher,
May 16, 1997).
-
The CDC supports the
goals of notifying partners, but fears a drastic reduction in anonymous
testing would result from the federal legislation, if passed, and would
deter people from gaining access to comprehensive services. The CDC
advocates the implementation and evaluation of the CDC guidelines for
partner counseling and referral services before enacting legislation (The
Kaiser Daily HIV/AIDS Report, Sept. 30, 1998).
-
In December 1998, the
CDC issued new guidelines for partner counseling and referral services.
Among other things, the guideline states that the service should be
voluntary, confidential, and culturally appropriate and a component of
comprehensive prevention services. In addition, the guidelines recommend
long-term counseling and support so that the service is available
throughout the infected person's lifetime. This support should include
client-centered counseling, help for those who choose to notify their
partners, and assistance in seeking medical treatment (HIV Partner
Counseling and Referral Services, CDC, Dec. 30, 1998).
-
State legislation on
notifying workers of HIV exposure, usually involving health care workers,
first responders, public safety employees or correctional officers,
focuses on five areas: making provisions for workers to be notified of a
possible exposure, requiring workers to notify their employers of a
potential exposure as soon as possible, allowing workers to request a
court order to have a source person tested for HIV, providing for a source
person to be tested under certain circumstances, and disclosing a tested
source person's results to an exposed worker. These types of laws exist in
most states. A 1997 Minnesota law refined the definition of a "significant
exposure" in light of current research and established testing and
notification protocols (A Summary of HIV/AIDS Laws from 1994, APC,
January 1995; NCSL, 1997 and 1998; APL, Dec. 26, 1997).
-
Four states-Arizona,
Mississippi, West Virginia and Virginia-recently enacted legislation
affording crime scene witnesses, "good samaritans," or "bystanding
caregivers" who assist victims during emergencies and are exposed to body
fluids the right to demand HIV testing or request the release of
information regarding communicable disease information (NCSL, 1997 and
1998).
-
Arkansas and Missouri
are the only states that require patients to notify health care providers
of their HIV status before receiving care. A 1998 Florida law allows
non-medical hospital employees to learn of a patient's HIV status if the
employee receives a significant exposure to the patient's blood or body
fluid (A Summary of HIV/AIDS Laws from 1993, APC, January 1994;
APL, Jan. 22, 1999).
Prenatal Counseling, Testing and Treatment
Source: "Update: Perinatally Acquired HIV/AIDS-United State, 1997," MMWR,
CDC, Nov. 21, 1997.
-
In effort to increase
universal counseling and voluntary testing, the Public Health Service
issued guidelines in 1995 on HIV routine counseling and voluntary testing
for pregnant women. The guidelines stated that pregnant women infected
with HIV should be provided with medical and psychosocial services, be
offered AZT, and be counseled against breastfeeding. AZT therapy should
begin by the 14th week of pregnancy and continue through delivery ("CDC
Guidelines for HIV Counseling and Voluntary Testing for Pregnant Women,"
CDC HIV/AIDS Prevention, July 1995, "CDC Urges Pregnant AIDS Test," AP,
July 6, 1995, in www.clari.tw.health.aids; Issue Brief, NASTAD,
July 1998).
-
Giving AZT to
pregnant HIV-infected women and their newborns can reduce perinatal
transmission of HIV by as much as two-thirds (67.5 percent), according to
National Institutes of Health AIDS Clinical Trial 076, reported in the
New England Journal of Medicine in November 1994. In 1994, and again
in 1998, the Centers for Disease Control and Prevention issued guidelines
for recommended use of AZT to reduce perinatal transmission. The updated
guidelines include information about the new combination therapy and the
importance of treating pregnant women with HIV for their own disease.
Medicaid is required to provide AZT to beneficiaries to prevent perinatal
transmission of HIV. AZT is effective in reducing perinatal transmission;
however, using it alone it is not recommended therapy for treating HIV (MMWR,
July 7, 1995; Facts About CDC's Draft Guidelines for HIV Counseling and
Voluntary Testing for Pregnant Women, CDC, February 1995;
Correspondence, Sally Richardson, DHHS, Sept. 1, 1995; Issue
Brief, NASTAD, July 1998).
-
CDC guidelines advise
doctors to counsel all pregnant women-4 million per year-about HIV and
AIDS and offer them voluntary HIV testing. Counseling and testing should
be offered as early in the pregnancy as possible. If the mother did not
receive prenatal care, or if her status is unknown, she should be
encouraged to obtain and offered HIV testing for her and her baby at or
shortly after labor and delivery, according to the CDC guidelines. This is
the first time the CDC has recommended voluntary testing for an entire
group of people ("Guidelines for HIV Counseling and Voluntary Testing for
Pregnant Women," HIV/AIDS Prevention, CDC, July 1995; "CDC Urges
Pregnant AIDS Test," AP, July 6, 1995, in
www.clari.tw.health.aids).
-
The American Medical
Association House of Delegates, at its June 1996 meeting, endorsed
mandatory HIV testing of pregnant women and newborns (AMA Ethical Opinions
on HIV/AIDS Issues, JAMA, June 1996).
-
In 1996, the Ryan
White CARE Act Amendments included several provisions for HIV testing and
counseling for pregnant women. The provisions mandated that all states
provide certifications to the CDC by September 1996 indicating the
adoption of regulations or other measures to implement the Public Health
Service recommendations for counseling and screening of pregnant women
with HIV. The amendments authorized grants to states to conduct counseling
and outreach, and to offset state costs for implementing CDC guidelines
for assessing new cases of HIV perinatal transmissions and newborn HIV
testing (Issue Brief, NASTAD, July 1998).
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The National Academy
of Sciences' Institute of Medicine convened a panel of health experts to
study strategies for reducing perinatal HIV transmission in the United
States. In October 1998, the panel released its recommendations, stating
that HIV testing should be made part of the routine prenatal blood tests
given to pregnant women, and that HIV testing should not be contingent
upon the current requirements for extensive pretest counseling. Current
recommendations promote universal counseling and voluntary testing based
on informed consent. The new recommendations represent an attempt to
respond to a panel finding that some doctors do not test women who are
perceived to be low-risk because precounseling is considered "sufficiently
burdensome." A few of these women are HIV positive and end up transmitting
the virus to their babies (Reducing the Odds: Preventing Perinatal
Transmission of HIV in the United States, IOM, October 1998;
Washington Post, Oct. 15, 1998).
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Although the
Institute of Medicine's panel believes that pretest counseling is still
beneficial, especially in populations where the prevalence of HIV is high
or where women are at higher risk, the panel's report advocates a new
policy of routine testing with notification. In other words, the test
should be part of a standard battery of prenatal tests. The woman would be
informed that an HIV test was being conducted and of her right to refuse
it. This recommendation, according to the panel, protects women from
having "to deal with the burden of disclosing personal risks or potential
stereotyping; the test would simply be a part of prenatal care that is the
same for everyone." Supporters of the recommendations believe the new
policy will increase access to HIV testing for all pregnant women.
Opponents cite concerns about lack of informed consent and the potential
for increasing distrust between patients and providers (Reducing the
Odds: Preventing Perinatal Transmission of HIV in the United States,
IOM, October 1998; Washington Post, Oct. 15, 1998).
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Approximately 75
percent of pregnant women who are receiving prenatal care are offered HIV
tests, about 80 percent accept them, and about 90 percent of those who
test positive take the recommended antiviral drugs (Washington Post,
Oct. 15, 1998).
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At least 11
states-California, Connecticut, Delaware, Hawaii, Illinois, Indiana,
Maryland, Michigan, New Jersey, Virginia and Washington-have laws that
require HIV counseling for pregnant women and voluntary testing. Two
states-Arkansas and Tennessee-require health care providers to test every
pregnant woman for HIV as early as possible in the pregnancy unless she
refuses. Texas authorizes health care providers to test for HIV during a
prenatal exam or during a delivery. In Florida, the "Targeted Outreach for
Pregnant Women Act of 1998" establishes a two-year pilot program to
provide outreach services to high-risk pregnant women, including
encouraging testing and treatment for HIV. A 1994 Michigan law also
requires physicians to offer HIV testing at the time of birth or during
the course of postpartum care (NCSL, 1997 and 1998; State Net Search,
1996; HIV/AIDS Bi-Weekly Report, APC, Sept. 15, 1995; Changing
Faces, Changing Directions, APC, May 1995).
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The 1997 Indiana law
requiring physicians to conduct HIV counseling and offer testing to
pregnant women was found to be inconsistently followed, according to state
health department testimony during the 1998 legislative session. As a
result, the state passed a law in 1998 authorizing physicians to screen
newborns for HIV if the mother was not tested during prenatal care. If the
doctor believes the test to be medically necessary, the newborn must be
tested no later than 48 hours after the birth, and the mother must be
notified and counseled. The health department also approved an emergency
rule giving physicians more guidance in following the 1997 law (NASTAD,
July 1998).
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Several states passed
legislation relating to perinatal transmission in 1997 and 1998. Florida
passed a law requiring employees of health care facilities to be
instructed in protocols and procedures relating to HIV counseling and
testing of pregnant women. New Hampshire established a committee to review
access to and availability of prenatal testing and counseling for HIV
infected women. Minnesota enacted one law to include prenatal HIV risk
assessment, education, counseling and testing in all existing statutes
concerning medical assistance coverage. The state enacted a second law
appropriating $200,000 for a two-year education campaign related to
preventing perinatal transmission of HIV (NCSL, 1997 and 1998).
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The cost of an HIV
test varies, ranging from $3 to $30. Experts believe that routine testing
would more than pay for itself by cutting the cost of caring for infected
children. The Institute of Medicine's panel concluded that it would cost
about $51,000 to identify each case of infection in a population in which
one of every 10,000 women is infected. This amount is significantly less
than the cost of caring for one infected child (NYT, Oct. 15, 1998;
Washington Post, Oct. 15, 1998).
Reporting and Surveillance
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According to some
health and policy experts, AIDS reporting no longer is sufficient to track
HIV disease. Treatment advances are lengthening the amount of time between
initial infection and illness. Data obtained from AIDS reporting are
becoming less representative of the epidemic, because as the number of HIV
and AIDS cases currently reported account for only one-third of the
estimated infections in the United States. Other experts disagree about
the value of the benefits of HIV reporting and the extent of the costs
("HIV Reporting in the States," Issue Brief, NCSL, Sept. 30, 1998;
Scott Burris, Temple Law School, Dec. 18, 1998).
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AIDS is reportable in
all states. Currently, 32 states track reports of HIV infection in adults
(people age 13 and older), either by name or unique (coded) identifier.
Connecticut requires named reports of HIV infection in children under age
13. Maine and Montana require reports on HIV infection, but not by name or
unique identifier. Oregon requires named reports of children under age 6
and in limited other circumstances. Washington requires named reports of
symptomatic HIV infection ("HIV Reporting in the States," Issue Brief,
NCSL, Sept. 30, 1998).
-
The debate in most
states that do not have reporting laws surrounds not whether to conduct
reporting, but, rather, how the reporting should be conducted. There are
two main options for HIV reporting-named reporting or by
identity-obscuring codes. Thirty states now rely on name-based HIV
surveillance reporting, with Iowa and New York the most recent states to
pass laws requiring name-based reporting ("HIV Reporting in the States,"
Issue Brief, NCSL, Sept. 30, 1998).
-
Until recently, two
states-Maryland and Texas-conducted HIV reporting though a system of
unique identifiers. In November 1998, the Texas Board of Health approved a
plan to switch to a named-based system because, according to the chief of
the health department's Bureau of HIV/STD Prevention, the coded system was
providing only about 25 percent of the total number of HIV cases reported.
Although Texas will continue to mandate the availability of anonymous
testing sites, some advocates fear that the new system will discourage
higher risk populations from undergoing testing. Maryland's system, which
has been refined and improved, has been found by the Maryland Department
of Health and Mental Hygiene to be 87 percent accurate for completeness of
the data (Dallas Morning News, Nov. 21, 1998; "HIV Reporting in the
States," Issue Brief, NCSL, Sept. 30, 1998).
-
The CDC recommends
that all states extend their reporting requirements to include those who
test positive for the HIV antibody. A 1997 survey conducted by the CDC
indicates that more than half of the remaining 18 states without universal
HIV surveillance may begin conducting reporting in the near future ("HIV
Reporting in the States," Issue Brief, NCSL, Sept. 30, 1998).
-
In December 1998, the
CDC recommended, as part of the proposed guidelines for HIV surveillance,
named-based reporting as "the most likely [system] to meet the necessary
performance standards." However, the CDC recognized that some states have
adopted, and others may elect to adopt, reporting systems using coded
identifiers. In the proposed guidelines, the CDC offers to provide
technical assistance to all state and local areas to continue or establish
HIV and AIDS surveillance systems and to evaluate their surveillance
programs regardless of whether they use name or non-name-based identifiers
("Draft Guidelines for National Case Surveillance," CDC, Dec. 10, 1998).
-
As an incentive, the
CDC is offering to provide federal funding to states that currently are
developing systems that meet the CDC's performance criteria, including
strict privacy protection and penalties for violators. The CDC also
recommends states provide anonymous testing programs as part of a
comprehensive strategy to encourage people to seek testing as early as
possible. Currently, 10 states-Alabama, Idaho, Iowa, Mississippi, Nevada,
North Carolina, North Dakota, South Dakota, Tennessee and Wyoming-do not
offer anonymous testing except through home collection kits ("HIV
Reporting in the States," Issue Brief, NCSL, Sep. 30, 1998; "Draft
Guidelines for National Case Surveillance," CDC, Dec. 10, 1998; The
Kaiser Daily HIV/AIDS Report, Dec. 10, 1998; APL, Dec. 25,
1998).
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To date, Alaska,
California, Delaware, Georgia, Hawaii, Illinois, Kansas, Kentucky,
Massachusetts, New Hampshire, Pennsylvania, Rhode Island, Vermont, the
District of Columbia and Puerto Rico have no HIV reporting laws, although
many are in various stages of proposing legislation or making changes in
regulation, policy or code. The Illinois Department of Public Health
approved an administrative rule to use "patient code numbers" for a
two-year trial period starting in July 1999. Hawaii is also in the process
of implementing a non-names based HIV tracking system. Likewise, in
October 1998, the Massachusetts Department of Health approved a regulation
to require doctors to report all current and active cases of HIV. The
state implemented a coded system of identifiers in January 1999 ("HIV
Reporting in the States," Issue Brief, NCSL, Sept. 30, 1998).
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The health
departments in Pennsylvania and Washington are taking steps to initiate
HIV reporting systems. In September 1998, Pierce County, Wash., became the
only county in the nation to adopt a name-based reporting system without
the backing of a statewide system. The state Board of Health will adopt
new reporting rules in March 1999. The board is expected to accept a
compromise proposal recommending that HIV be reported confidentially by
name to local public health officers, but be reported only by an encoded
number at the state level. In Pennsylvania, the Allegheny County Board of
Health convened a panel of experts to recommend a policy on HIV reporting
(AP, Jan. 18, 1999; "HIV Reporting in the States," Issue Brief,
NCSL, Sept. 30, 1998; Pittsburgh Tribune-Review, Oct. 6, 1998;
Tacoma News Tribune, Nov. 13, 1998).
-
Proponents of coded
identifiers cite concerns about breaches in confidentiality of named-based
reporting systems. In 1997 in Florida, a list of 4,000 names of HIV
infected people was stolen and mailed to two newspapers. In addition, many
policymakers, advocates and service providers believe named reporting
deters people from seeking testing and is not essential for effective
prevention. In New Jersey, the number of people being tested declined from
80,628 in 1992, the first full year of HIV named reporting, to 62,088 in
1997. The reasons for this decline are not clear, although state health
officials say it is due to a shift in focus toward encouraging testing in
higher-risk populations (NYT, May 29, 1998).
-
Opponents of coded
HIV tracking criticize the systems for being incomplete. One recent CDC
review of data from 1994 to 1996 found 29 percent of reports from Maryland
and 38 percent of reports from Texas missing at least one element of the
unique identifier (MMWR, Jan. 9, 1998; "HIV Reporting in the
States," Issue Brief, NCSL, Sept. 30, 1998).
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Two recent studies
have looked at the effect of named-based reporting on testing. A CDC study
found that the total number of HIV tests in four states rose in the year
after name-based reporting was implemented. However, in two
states-Louisiana and Tennessee-HIV testing declined among homosexuals. In
three states-Louisiana, Michigan and New Jersey-intravenous drug users
were less likely to be tested. The researchers concluded that the effects
of this decline were small. In a second study, researchers in California
found that people who used anonymous testing sites sought testing and
treatment significantly earlier than those who use confidential testing.
During anonymous testing, the identity of the person undergoing testing is
coded. In confidential testing, a person's name is recorded but kept
confidential from everyone except medical personnel, and in some states,
the state health department (JAMA, Oct. 28, 1998; Kaiser Daily
HIV/AIDS Report, Oct. 28, 1998).
-
Although these two
studies appear to contradict each other, the CDC asserts that both point
to the need for the availability of anonymous test sites for high risk
populations. While named-based reporting does not appear to be a major
deterrent to testing, the option to test anonymously encourages people who
are concerned about confidentiality, to learn the results of their HIV
status (JAMA, Oct. 28, 1998; Kaiser Daily HIV/AIDS Report,
Oct. 28, 1998).
School Education
-
School-based HIV
prevention education programs with the greatest proven effects share
certain characteristics. They:
-
Target a specific
risk behavior;
-
Reinforce values
and norms against unprotected sex;
-
Provide basic,
accurate information;
-
Use active learning
methods;
-
Examine social and
media influences that pressure teens into having sexual intercourse; and
-
Provide practice in
communication and skills to help with refusal and negotiation. In
addition, repeated "booster lessons" are essential to influence behavior
(Someone at School Has AIDS, draft, National Association of State
Boards of Education, April 1995; Forward in School Health Network
(FISH), National Education Association, Summer 1995).
-
Thirty-seven states
and the District of Columbia require HIV/AIDS education in the schools.
HIV prevention curricula or guidelines exist in 43 states, the District of
Columbia, Puerto Rico and the Virgin Islands. Twenty-nine states, the
District of Columbia and Puerto Rico have evaluation criteria for
measuring the effectiveness of HIV prevention education programs. Four
states-Hawaii, Massachusetts, New Jersey and South Carolina-have exemplary
HIV prevention education curriculum and guidelines, according to the Sex
Information and Education Council of the United States. This rating was
given to states that have programs that are thorough and comprehensive,
cover most key concepts and topics, and contain grade-specific,
developmentally appropriate information (Review of State Education
Agency HIV/AIDS Prevention and Sexuality Education Programs, SIECUS,
May 1995; "Sexuality Education in the Schools: Issues and Answers," SIECUS
Fact Sheet, 1998).
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Forty-six states, the
District of Columbia, Puerto Rico and the Virgin Islands have advisory
committees for HIV education. Thirty states have a state-school community
advisory committee to recommend appropriate sexuality education material
and concepts at various grade levels. Sixteen states have advisory
committees with comprehensive representation from seven recommended
categories: the state health departm
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