The AIDS epidemic, caused by HIV (Human Immunodeficiency Virus), found its way to the United States as early as 1960, but was first noticed after doctors discovered clusters of Kaposi's sarcoma and pneumocystis pneumonia
in gay men in Los Angeles, New York City, and San Francisco in 1981.
Treatment of HIV/AIDS is primarily via a "drug cocktail" of antiretroviral drugs, and education programs to help people avoid infection.
Initially, infected foreign nationals were turned back at the
U.S. border to help prevent additional infections. The number of U.S.
deaths from AIDS have declined sharply since the early years of the
disease's presentation domestically. In the United States, 1.2 million
people live with an HIV infection, of whom 15% are unaware of their
infection. Gay and bisexual men, African Americans, and Latinos remain disproportionately affected by HIV/AIDS in the U.S.
Mortality and morbidity
As of 2016, about 675,000 people have died of HIV/AIDS in the U.S. since the beginning of the HIV epidemic.
With improved treatments and better prophylaxis against opportunistic infections, death rates have quite significantly declined.
The overall death rate among persons diagnosed with HIV/AIDS in New York City decreased by sixty-two percent from 2001 to 2012.
Containment
Medical treatment
A chart of AIDS deaths in the United States from 1987 to 1997.
A chart of AIDS deaths in the United States from 1998 to 2002.
Great progress was made in the U.S. following the introduction of three-drug anti-HIV treatments ("cocktails") that included antiretroviral drugs. David Ho, a pioneer of this approach, was honored as Time Magazine
Man of the Year for 1996. Deaths were rapidly reduced by more than
half, with a small but welcome reduction in the yearly rate of new HIV
infections. Since this time, AIDS deaths have continued to decline, but
much more slowly, and not as completely in black Americans as in other
population segments.
Travel restrictions
The
second prong of the American approach to containment has been to
maintain strict entry controls to the country for people with HIV or
AIDS. Under legislation enacted by the United States Congress
in 1993, patients found importing anti-HIV medication into the country
were arrested and placed on flights back to their country of origin.
Some HIV-positive travelers took to sending anti-HIV medication
through the post to friends or contacts in advocacy groups in advance.
This meant that the traveller would not be discovered with any
medication. However, the security clampdown following the September 11 attacks in 2001 meant this was no longer an option.
The only legal alternative to this was to apply for a special visa
beforehand, which entailed an interview at an American Embassy,
confiscation of the passport during the lengthy application process, and
then, if permission were granted, a permanent attachment being made to
the applicant's passport. This process was condemned as intrusive and invasive by a number
of advocacy groups, on the grounds that any time the passport was later
used for travel elsewhere or for identification purposes, the holder's
HIV status would become known. It was also felt that this rule was
unfair because it applied even if the traveller was covered for
HIV-related conditions under their own travel insurance.
In early December 2006, President George W. Bush indicated that he would issue an executive order allowing HIV-positive people to enter the United States on standard visas. It was unclear whether applicants would still have to declare their HIV status. However, the ban remained in effect throughout Bush's Presidency. In August 2007, Congresswoman Barbara Lee of California introduced H.R. 3337,
the HIV Nondiscrimination in Travel and Immigration Act of 2007. This
bill would have allowed travelers and immigrants entry to the United
States without having to disclose their HIV status. The bill died at the
end of the 110th Congress.
In July 2008, then President George W. Bush signed H.R. 5501 that lifted the ban in statutory law. However, the United States Department of Health and Human Services
still held the ban in administrative (written regulation) law. New
impetus was added to repeal efforts when Paul Thorn, a UK tuberculosis
expert who was invited to speak at the 2009 Pacific Health Summit
in Seattle, was denied a visa due to his HIV positive status. A letter
written by Mr. Thorn, and read in his place at the Summit, was obtained
by Congressman Jim McDermott, who advocated the issue to the Obama administration's Health Secretary.
On October 30, 2009 President Barack Obama reauthorized the Ryan White HIV/AIDS Bill which expanded care and treatment through federal funding to nearly half a million.
He also announced that the Department of Health and Human Services
crafted regulation that would end the HIV Travel and Immigration Ban
effective in January 2010; on January 4, 2010, the United States Department of Health and Human Services, Centers for Disease Control and Prevention removed HIV infection from the list of "communicable diseases
of public health significance," due to it not being spread by casual
contact, or by air, food or water, and removed HIV status as a factor to
be considered in the granting of travel visas, disallowing HIV status from among the diseases that could prevent people who are not U.S. citizens from entering the country.
Public perception
The number of people living with HIV in the United States, and the total cumulative number of deaths.
One of the best known works on the history of HIV is 1987's book And the Band Played On, by Randy Shilts. Shilts contends that Ronald Reagan's
administration dragged its feet in dealing with the crisis due to
homophobia, while the gay community viewed early reports and public
health measures with corresponding distrust, thus allowing the disease
to infect hundreds of thousands more. This resulted in the formation of
ACT-UP, the AIDS Coalition to Unleash Power by Larry Kramer.
Galvanized by the federal government's inactivity, the movement by AIDS
activists to gain funding for AIDS research, which on a per-patient
basis out-paced funding for more prevalent diseases such as cancer and
heart disease, was used as a model for future lobbying for health
research funding.
The Shilts work popularized the misconception that the disease was introduced by a gay flight attendant named Gaëtan Dugas, referred to as "Patient Zero,"
although the author did not actually make this claim in the book.
However, subsequent research has revealed that there were cases of AIDS
much earlier than initially known. HIV-infected blood samples have been
found from as early as 1959 in Africa (see HIV main entry), and HIV has been shown to have caused the death of Robert Rayford,
a 16-year-old St. Louis male, in 1969, who could have contracted it as
early as 7 years old due to sexual abuse, suggesting that HIV had been
present, at very low prevalence, in the U.S. since before the 1970s.
An early theory asserted that a series of inoculations against hepatitis B that were performed in the gay community of San Francisco were tainted with HIV. Although there was a high correlation between recipients of that vaccination and initial cases of AIDS, this theory has long been discredited. HIV, hepatitis B, and hepatitis C are bloodborne diseases with very similar modes of transmission, and those at risk for one are at risk for the others.
Activists and critics of current AIDS policies allege that
another preventable impediment to stemming the spread of the disease
and/or finding a treatment was the vanity of "celebrity" scientists. Robert Gallo, an American scientist involved in the search for a new virus in the people affected by the disease, became embroiled in a legal battle with French scientist Luc Montagnier,
who had first discovered such a virus in tissue cultures derived from a
patient suffering from enlargement of the lymphnodes (an early sign of
AIDS). Montagnier had named the new virus LAV
(Lymphoadenopathy-Associated Virus).
Gallo, who appeared to question the primacy of the French
scientist's discovery, refused to recognize the "French virus" as the
cause of AIDS, and tried instead to claim the disease was caused by a
new member of a retrovirus family, HTLV,
which he had discovered. Critics claim that because some scientists
were more interested in trying to win a Nobel prize than in helping
patients, research progress was delayed and more people needlessly died.
After a number of meetings and high-level political intervention, the
French scientists and Gallo agreed to "share" the discovery of HIV,
although eventually Montagnier and his group were recognized as the true
discoverers, and won the 2008 Nobel Prize for it.
Publicity campaigns were started in attempts to counter the
incorrect and often vitriolic perception of AIDS as a "gay plague".
These included the Ryan White case, red ribbon campaigns, celebrity dinners, the 1993 film version of And the Band Played On, sex education programs in schools, and television advertisements. Announcements by various celebrities that they had contracted HIV (including actor Rock Hudson, basketball star Magic Johnson, tennis player Arthur Ashe and singer Freddie Mercury)
were significant in arousing media attention and making the general
public aware of the dangers of the disease to people of all sexual
orientations.
By race/ethnicity
African Americans
continue to experience the most severe burden of HIV, compared with
other races and ethnicities. Black people represent approximately 13% of
the U.S. population, but accounted for an estimated 43% of new HIV
infections in 2017.
Furthermore, they make up nearly 52% of AIDS-related deaths in America.
While the overall rates of HIV incidences and prevalence have
decreased, they have increased in one particular demographic: African
American gay and bisexual men (a 4% increase). In America, black
households were reported to have the lowest median income, leading to
lower rates of insured individuals. This creates cost barriers to
antiretroviral treatments.
Hispanics/Latinos are also disproportionately affected by
HIV. Hispanics/Latinos represented 16% of the population but accounted
for 21% of new HIV infections in 2010. Hispanics/Latinos accounted for
20% of people living with HIV infection in 2011. Disparities persist in
the estimated rate of new HIV infections in Hispanics/Latinos. In 2010,
the rate of new HIV infections for Latino males was 2.9 times that for
white males, and the rate of new infections for Latinas was 4.2 times
that for white females. Since the epidemic began, more than 100,888
Hispanics/Latinos with an AIDS diagnosis have died, including 2,155 in
2012.
American Indian/Alaskan Native Communities in the United
States also see a higher rate of HIV/AIDS in comparison to whites,
Asians, and Native Hawaiians/other Native Pacific Islanders. Although
AI/AN sufferers of HIV/AIDS only represent roughly 1% of all sufferers
in the U.S.[16],
the number of diagnoses amongst AI/AN gay and bisexual men rose by 54%
between 2011 and 2015. Additionally, the survival rate of diagnosed
AI/AN was the lowest of all races in the United States between 1998 and
2005 . In recent years, the Centres for Disease Control and Prevention (CDC) have put in place a “high impact prevention approach”
in partnership with the Indian Health Service and the CDC Tribal
Advisory Committee to tackle the growing rates in a culturally
appropriate way.
The higher rate of HIV/AIDS cases amongst AI/AN people have been
attributed to a number of factors including socioeconomic disadvantages
faced by AI/AN communities, which may result in difficulty accessing
healthcare and high-quality housing. It may be more difficult for gay
and bisexual AI/AN men to access healthcare due to living in rural
communities, or due to stigma attached to their sexualities. AI/AN
people have also been reported to have higher rates of other STIs,
including chlamydia and gonorrhea, which also increases likeliness of
contracting or transmitting HIV.
Furthermore, as there are over 560 federally recognised AI/AN tribes,
there is some difficulty in creating outreach programmes which
effectively appeal to all tribes whilst remaining culturally
appropriate. As well as fear of stigma from within AI/AN communities,
there may also be a fear amongst LGBTQ+ AI/AN of a lack of understanding
from health professionals in the United States, particularly amongst Two Spirit
people. A 2013 NASTAD report calls for the inclusion of LGBT and Two
Spirit AI/AN in HIV/AID program planning and asserts that “health
departments should utilize local experts to better understand regional
definitions of “Two Spirit” and incorporate modules on Native gay men
and Two Spirit people into cultural sensitivity courses for public
health service providers”.
"Down-Low" culture amongst Black MSM
Down-low is an African American slang term that typically refers to a subculture of Black men who usually identify as heterosexual, but who have sex with men; some avoid sharing this information even if they have female sexual partner(s) married or single.
According to a study published in the Journal of Bisexuality,
"[t]he Down Low is a lifestyle predominately practiced by young, urban
Black men who have sex with other men and women, yet do not identify as
gay or bisexual".
In this context, "being on the Down Low" is more than just men having sex with men in secret, or a variant of closeted
homosexuality or bisexuality—it is a sexual identity that is, at least
partly, defined by its "cult of masculinity" and its rejection of what
is perceived as White culture (including white LGBT culture) and terms. A 2003 New York Times Magazine cover story on the Down Low phenomenon explains that the Black community sees "homosexuality as a White man's perversion."
The CDC
cited three findings that relate to African-American men who operate on
the down-low (engage in MSM activity but don't disclose to others):
- African American men who have sex with men (MSM), but who do not disclose their sexual orientation (nondisclosers), have a high prevalence of HIV infection (14%); nearly three times higher than nondisclosing MSMs of all other races/ethnicities combined (5%).
- Confirming previous research, the study of 5,589 MSM, aged 15–29 years, in six U.S. cities found that African American MSM were more likely not to disclose their sexual orientation compared with White MSM (18% vs. 8%).
- HIV-infected nondisclosers were less likely to know their HIV status (98% were unaware of their infection compared with 75% of HIV-positive disclosers), and more likely to have had recent female sex partners.
Risk Factors contributing to the Black HIV rate
Accessibility to healthcare is very important in preventing and
treating HIV/AIDs. It can be affected by health insurance which is
available to people through private insurers, Medicare and Medicaid which leaves some people still vulnerable. Historically, African Americans have faced discrimination when it comes to receiving healthcare.
During the time of slavery, slave owners would get medical attention
for slaves because they were deemed as property, while slaves that the
slave owners believed were not able to recover were sent to be
experimented on. In the late eighteenth century and early nineteenth
century, universities dug up African American bodies to autopsy, and
some night doctors would snatch people off the streets to examine.
African Americans have been experimented on and exploited for centuries.
The Tuskegee Syphilis study experimented vulnerable men in the South
who had syphilis. They kept treatment from these men to see what would
happen. Henrietta Lacks was also exploited when researchers took her cancerous cells and grew them to experiment on them.
Homosexuality is viewed negatively in the African American
Community. "In a qualitative study of 745 racially and ethnic diverse
undergraduates attending a large Midwestern university, Calzo and Ward
(2009) determined that parents of African-American participants
discussed homosexuality more frequently than the parents of other
respondents. In analyses of the values communicated, Calzo and Ward
(2009) reported that Black parents offered greater indication that
homosexuality is perverse and unnatural".
Homosexuality is seen as a threat to the African American empowerment.
Masculinity is seen as important for the African American community
because it shows that the community is in control of their own destiny.
Since the stigma circling homosexuality is that it is “effeminate”, then
homosexuality is seen as a threat to masculinity. “Black manhood, then,
depends on men's ability to be provider, progenitor, and protector.
But, as the Black male performance of parts of this script is thwarted
by economic and cultural factors, the performance of Black masculinity
becomes predicated on a particular performance of Black sexuality and
avoidance of weakness and femininity. If sexuality remains one of the
few ways that Black men can recapture a masculinity withheld from them
in the marketplace, endorsing Black homosexuality subverts the cultural
project of reinscribing masculinity within the Black community." This
critical view is influenced by Internalized homophobia. “Internalized
homophobia is defined as the lesbian, gay, or bisexual individual's
inward direction of society's homophobic attitudes (Meyer 1995)."
The African American community's social norms regarding
homosexuality have influenced a higher percentage of African Americans
with internalized homophobia. This homophobic culture is sustained
within the African American community through the church because
religion is a vital part of the African American community: "As reported
by Peterson and Jones (2009), AA MSM tended to be more involved with
religious communities than NHW MSM." Because the church reiterates this
stigma of homosexuality, the African American community has higher rates
of internalized homophobia. This internalized homophobia causes a lower
chance of HIV/AIDS education on prevention and care within the African
American community.
Sex education varies throughout the United States and in some
areas could use more informative measures. African-Americans and
Hispanic/ Latinos experience higher rates of lower socioeconomic
statuses and fewer opportunities than white people. This causes limited
access to (higher) education in lower socioeconomic areas. Sex education
on HIV prevention has decreased from 64% (2000) to 41% (2014). Out of
the 50 states, 26 put a larger emphasis on abstinence sex education.
Abstinence only sex education is correlated to increasing rates of HIV
especially in teenagers and young adults.
With mass incarceration of the African American community, HIV has been spreading rapidly throughout jails and prisons.
“Among jail populations, African American men are 5 times as likely as
white men, and twice as likely as Hispanic/Latino men, to be diagnosed
with HIV.” Since most people contract HIV before being incarcerated, it
is hard to know who has the disease and to keep it from spreading. A
lack of hygiene in prisons perpetuates these problems. Many inmates do
not disclose their high-risk behaviors, such as anal sex or injection
drug use, because they fear being stigmatized and ostracized by other
inmates.There is also a lack of educational programs on disease
prevention for inmates. Because “nine out of ten jail inmates are
released in under 72 hours which makes it hard to test them for HIV and
help them find treatment,” the problem persists outside of prison.
Activism and response
Starting
in the early 1980s, AIDS activist groups and organizations began to
emerge and advocate for people infected with HIV in the United States.
Though it was an important aspect of the movement, activism went beyond
the pursuit of funding for AIDS research. Groups acted to educate and
raise awareness of the disease and its effects on different populations,
even those thought to be at low-risk of contracting HIV. This was done
through publications and “alternative media” created by those living
with or close to the disease.
Activist groups worked to prevent spread of HIV by distributing
information about safe sex. They also existed to support people living
with HIV/AIDS, offering therapy, support groups, and hospice care. Organizations like Gay Men's Health Crisis,
the Lesbian AIDS Project, and SisterLove were created to address the
needs of certain populations living with HIV/AIDS. Other groups, like
the NAMES Project,
emerged as a way of memorializing those who had passed, refusing to let
them be forgotten by the historical narrative. One group, the
Association for Drug Abuse Prevention and Treatment (ADAPT), headed by Yolanda Serrano, coordinated with their local prison, Riker's Island Correctional Facility,
to advocate for those imprisoned and AIDS positive to be released
early, so that they could pass away in the comfort of their own homes.
Both men and women, heterosexual and queer populations were
active in establishing and maintaining these parts of the movement.
Because AIDS was initially thought only to impact gay men, most
narratives of activism focus on their contributions to the movement.
However, women also played a significant role in raising awareness,
rallying for change, and caring for those impacted by the disease.
Lesbians helped organize and spread information about transmission
between women, as well as supporting gay men in their work. Narratives
of activism also tend to focus on organizing done in coastal cities, but
AIDS activism was present and widespread across both urban and more
rural areas of the United States. Organizers sought to address needs
specific to their communities, whether that was working to establish needle exchange programs,
fighting against housing or employment discrimination, or issues faced
primarily by people identified as members of specific groups (such as
sex workers, mothers and children, or incarcerated people).
Present day activism
An
effective response to HIV/AIDS requires that groups of vulnerable
populations have access to HIV prevention programs with information and
services that are specific to them.
In the present day, some activist groups and AIDS organizations that
were established during the height of the epidemic are still present and
working to assist people living with AIDS.
They may offer any combination of the following: health education,
counseling and support, or advocacy for law and policy. AIDS
organizations also continue to call for public awareness and support
through participation in events like pride parades, World AIDS Day, or AIDS walks. Newer activism has appeared in advocacy forPre-Exposure Prophylaxis
(PrEP), which has shown to significantly limit transmission of HIV.
While PrEP appears to be extremely successful in suppressing the spread
of HIV infection, there is some evidence that the reduction in HIV risk
has led to some people taking more sexual risks, specifically, reduced
use of condoms in anal sex.
Current status
The CDC estimates that 1,122,900 U.S. residents aged 13 years and older are living with HIV infection as of 2016, including 162,500 (15%) who are unaware of their infection.
Over the past decade, the number of people living with HIV has
increased, while the annual number of new HIV infections has declined to
about 40,000 new HIV infections.
Within the overall estimates, however, some groups are affected more
than others. MSM continue to bear the greatest burden of HIV infection,
and among races/ethnicities, African Americans continue to be
disproportionately affected.
An estimated 15,807 people with an AIDS diagnosis died in 2016,
and approximately 658,507 people in the United States with an AIDS
diagnosis have died overall. The deaths of persons with an AIDS
diagnosis can be due to any cause—that is, the death may or may not be
related to AIDS.
In California alone, 184,429 HIV cases (including children) were reported by December 2008. Of those, 85,958 have died, with 31,076 in Los Angeles County, 18,838 in San Francisco, and 7,135 in San Diego County.
In 2015, 48,824 people were living with HIV (not AIDS) in the state of New York, with 38,441 in New York City alone.
Washington, D.C. has a particularly high incidence of HIV/AIDS, with 177 new cases annually per 100,000 people as of 2012, more than nine times higher than any state.
In the United States, men who have sex with men (MSM), described as gay and bisexual,
make up about 55% of the total HIV-positive population, and 67% of new
HIV cases and 83% of the estimated new HIV diagnoses among all
males aged 13 and older, and an estimated 92% of new HIV diagnoses among
all men in their age group (2014 report). 1 in 6 gay and bisexual men
are therefore expected to be diagnosed with HIV in their lifetime if
current rates continue. Gay and bisexual men accounted for an estimated
54% of people diagnosed with AIDS, with 39% being African American, 32%
being white, and 24% being Hispanic/Latino. The CDC estimates that more than 600,000 gay and bisexual men are currently living with HIV in the United States. A review of four studies in which trans women in the United States were tested for HIV found that 27.7% tested positive.
In a 2008 study, the Center for Disease Control found that, of
the study participants who were men who had sex with men ("MSM"), almost
one in five (19%) had HIV and "among those who were infected, nearly
half (44 percent) were unaware of their HIV status." The research found
that white MSM "represent a greater number of new HIV infections than
any other population, followed closely by black MSM—who are one of the
most disproportionately affected subgroups in the U.S." and that most
new infections among white MSM occurred among those aged 30–39 followed
closely by those aged 40–49, while most new infections among black MSM
have occurred among young black MSM (aged 13–29).
In 2015, a major HIV outbreak, Indiana's
largest-ever, occurred in two largely rural, economically depressed and
poor counties in the southern portion of the state, due to the
injection of a relatively new opioid-type drug called Opana (oxymorphone),
which is designed be taken in pill form but is ground up and injected
intravenously using needles. Because of the lack of HIV cases in that
area beforehand and the youth of many but not all of those affected, the
relative unavailability in the local area of safe needle exchange
programs and of treatment centers capable of dealing with long-term
health needs, HIV care, and drug addiction during the initial phases of
the outbreak, it was not initially adequately contained and dealt with
until those were set up by the government, and acute awareness of the
issue spread. Such centers have now been opened, and short-term care is
beginning to be provided; once the scope of the outbreak became clear,
Governor Mike Pence,
despite some initial reservations, approved a legislative measure to
allow safe, clean needle exchange programs and treatment for those
affected, which could end up being instituted statewide.
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