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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

http://www.ncsl.org/

Source: Health Policy Tracking Service, NCSL, 1998.

Blood and Semen Donation

  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • At least 21 states require HIV testing of semen donors (NCSL, 1997 and 1998; APL , Dec. 26, 1997, and Jan. 22, 1999).
  • California passed a law in 1997 requiring milk banks to screen donors for HIV antibodies (APL, Dec. 26, 1997).
  • 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

  • Condom sales have climbed to $450 million a year in the United States (Consumer Reports, May 1995).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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

  • 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).
  • 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).
  • 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).
  • 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).
  • 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

  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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 ).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • A 1997 Arkansas law requires correctional institutions to notify probation and parole officers of an inmate's HIV-status (APL, Dec. 26, 1997).
  • 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

  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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

  • 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).
  • 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).
  • 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).
  • 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).
  • 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).
  • 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