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HIV & AIDS in USA
Since the beginning of the HIV and AIDS epidemic well over half a million people have died of AIDS in the United States of America1 – the equivalent of the entire population of Las Vegas. There are currently around 1.3 million people living with HIV in the United States of America2 and around a fifth of these are unaware of their infection,3 posing a high risk of onward transmission.
The USA’s response to the AIDS epidemic has produced mixed results. HIV prevention efforts have not always been successful and in 2011 approximately 49,000 Americans were infected with HIV.4 Washington DC has an HIV prevalence of 3.2 percent among people over 12 years - similar to rates in some parts of sub-Saharan Africa.5
Despite the seriousness of the epidemic, particularly in certain geographic areas and among certain demographic groups, the USA lacked a comprehensive plan on AIDS until 2010. President Obama had promised to rectify this during his election campaign by committing to the creation of a National HIV/AIDS Strategy. The Strategy, which was launched in July 2010, is structured around three core aims: reducing new HIV infections, increasing access to care and improving health outcomes for people living with HIV, and reducing HIV-related disparities and health inequities.6
Stigma and discrimination towards HIV positive people still persist and thousands of uninsured Americans struggle to access good HIV care and antiretroviral therapy. The world’s biggest donor of AIDS-related funding is itself facing a major, ongoing AIDS epidemic.
Who is affected by HIV in the United States of America?
Although HIV and AIDS can and do affect all sectors of American society, the impact has been more serious among some groups than others. In the early years of the epidemic, the most commonly identified ‘vulnerable groups’ in the USA were men who have sex with men, injecting drug users, haemophiliacs and Haitians. However, the inclusion of Haitians in this group caused a lot of controversy. To find out more visit our History of AIDS in the United States of America page.
Today, AIDS continues to directly affect thousands of gay and bisexual men and injecting drug users every year, but it has also become a serious problem among Black Americans and, more recently, among the Hispanic/Latino population. However, it is not necessarily individual behaviour, but rather a person's sexual network which determines an individual's HIV risk in the USA. Therefore, black males are much more likely to be infected because of the high prevalence in this community and a tendency to choose racially similar partners as opposed to simply high-risk behaviour.
Wealth status also determines the likelihood of HIV infection in the USA. A study by the Centers for Disease Control and Prevention (CDC) in 2010 showed that in America's poorest urban neighbourhoods HIV prevalence was 2.1 percent among heterosexuals, or more than 4 times the national average.7 Race or ethnicity did not account for any significant differences within the high-poverty groups studied. Rather, higher HIV risk within poor urban areas was attributed to, among other factors, high HIV prevalence, limited access to health care and other basic services, and high rates of substance abuse and incarceration. Socioeconomic status and HIV prevalence are also linked among men who have sex with men.8
Younger people are also a more at-risk group. Although overall, the rate of new infections remained stable between 2006 and 2009, among adolescents and young adults HIV incidence increased by 21 percent. For young people who belong to key populations at higher risk, the increase was especially high; for example there was a 34 percent increase among young men who have sex with men during the same period.9
The table below shows how the burden of AIDS among various ethnic groups compares to the percentage of the population that each ethnic group represents.
|Race||Estimated % of new AIDS diagnoses in 200910||% of population in 200811|
|American Indian/Alaska Native||<1%||<1%|
|Native Hawaiian/Other Pacific Islander||<1%||<1%|
African Americans: As the table above shows, African Americans are disproportionately affected by the AIDS epidemic. To date, black Americans account for 40 percent of all recorded AIDS related deaths.12 The AIDS related deaths of well-known African Americans - such as anchorman Max Robinson, tennis player Arthur Ashe, and rapper Eazy-E - during the 1980s and 90s, increased awareness of the AIDS epidemic among the black community, though there are signs that this level is decreasing. Both African American men and women are most likely to have become infected through sex with a man, with injecting drug use being the second most likely infection route. Factors such as heightened levels of poverty, lack of access to adequate healthcare, and stigma surrounding men who have sex with men shape the epidemic among African Americans.
Visit our HIV & AIDS among African Americans page for more information.
Hispanics/Latinos: Hispanics/Latinos are also disproportionately affected by the AIDS epidemic in the USA. It is estimated that 1 in every 52 Hispanics/Latinos will be diagnosed with HIV in their lifetime.13 The risk for men and women differs widely though; 1 in 36 Hispanic/Latino men will be diagnosed with HIV in their lifetime compared to 1 in 106 Hispanic/Latino women.14 Three quarters of new HIV infections among Hispanic/Latino men occur among men who have sex with men (MSM), and Hispanic/Latino MSM are thought to have the highest rates of unprotected sex among MSM in the US.15 Additionally, the Hispanic/Latino community has a disproportionately low access to healthcare. This is reflected in the number of deaths from AIDS among Hispanics/Latinos which has remained relatively stable since the beginning of the new millennium despite an overall decline in AIDS mortality in the USA.16 Language barriers, cultural factors, and migration patterns have also been identified as barriers to HIV treatment and prevention within the Hispanic/Latino community.17 In New York City, where 40 percent of all households are made up of Latinos born outside the US, the majority of health and civil society organisations cite a lack of bilingual and culturally sensitive HIV and AIDS services as a key obstacle to dealing with the city's epidemic.18 HIV was the fifth leading cause of death for Hispanics/Latinos aged 35–44 and the sixth leading cause of death for Hispanics/Latinos aged 25–34 in the US in 2007.19
Men who have sex with men: At the beginning of the USA’s epidemic, AIDS primarily affected men who have sex with men (MSM). Today, MSM still account for around three-quarters of HIV diagnoses among male adults and adolescents and the rate of HIV diagnoses among MSM is more than 44 times that of other men.20 According to one study published by the CDC in 2010, one in five MSM in the 21 cities surveyed has HIV and almost half are unaware of their status.21 Gay and bisexual men of all races are the only group where new infections are rising every year and it is thought this rising number of new infections is due to an increasing number of MSM having unprotected sex.22 23 The availability of antiretroviral treatment may also have lessened the fear surrounding AIDS, leading to complacency about using condoms.24 This complacency is evident in Washington D.C, where a study by the city's HIV/AIDS Administration revealed 40 percent of gay men had not used a condom with their last sexual partner. The study also found that, contrary to popular belief, men older than 30 had more sexual partners and were less likely to use condoms or get tested than their younger counterparts.25 Low testing rates among young MSM mean that the majority of HIV infected men under 30 are unaware of their HIV status.26 Due to their high HIV transmission risk MSM in the USA are recommended to go for HIV testing at least once a year.
Injecting drug users: Among those living with an AIDS diagnosis in the US in 2008, around 20 percent were infected with HIV through injecting drug use (IDU).27 Throughout the epidemic, prevention efforts among IDUs have been controversial. For 21 years, needle exchange services – where users exchange their used needles for clean ones – were not permitted any federal funding, even though in some areas of the USA these programmes have proved to be successful in reducing the rate of HIV transmission.28 29 The ban on federal funding for needle exchanges was lifted in 2009, however, in a controversial move Congress failed to allocate funding for needle exchanges for fiscal year (FY) 2012.30
Geographic differences are a key feature of the epidemic in the US. This is due partly to the concentration of key populations that are typically at risk of HIV infection in certain areas of the U.S. Another reason is that there are great variations in health-care between different states. AIDS-related mortality rates vary geographically, far more than within other resource-rich countries where national health insurance programmes or health policies are geographically uniform.31
The map on the right shows which states had the highest number of people living with AIDS in 2007, relative to the population of each state.32 The difference in concentration of people living with HIV seen across U.S states today, can be partly explained by the history of HIV and AIDS in the USA. The epidemic was once concentrated mainly in the gay populations on the East and West coasts. However, in recent years HIV has also become increasingly prevalent within black and Latino communities in many Southern states as well as certain urban areas in the North-east and West-coast.
As the epidemic has developed, it has become increasingly clear that the quality of prevention and treatment services an individual receives is influenced as much by where they live, as by their socio-economic group. In 2010, a report criticised the response to the AIDS epidemic in the 17 states in "the South".33 According to the report, a combination of socioeconomic conditions and state laws and policies means that this region is disproportionately affected by the epidemic; half of all people living with HIV live in the South although this region is home to just over a third of the population. Poverty, poor access to healthcare relative to the rest of the country, a focus on abstinence based sex education, and laws that criminalise HIV transmission and restrict harm reduction programmes for IDUs are some of the factors which explain why the risk of becoming infected with HIV and dying from AIDS is highest in the South.34 A study examining data from across the country also found that, for socioeconomic reasons, non-white men and particularly non-white women residing in the South experience the worst clinical outcomes after being diagnosed with HIV.35
Poor urban neighbourhoods are particularly affected by HIV and AIDS in the USA. Nowhere is this more evident than in Washington D.C, where the AIDS epidemic has been described as “the strongest, most complete example of a domestic urban epidemic in the US”.36 The high HIV prevalence in Washington D.C. (3 percent) has been attributed to a number of factors including inadequate disease reporting, poverty and a lack of comprehensive sex education in schools.37
HIV and AIDS prevention in the United States of America
One of the three components of the USA's National HIV/AIDS Strategy is the reduction of new HIV infections. According to the Strategy "not every person or group has an equal chance of becoming infected with HIV".38 Accordingly, the Strategy recommends that HIV prevention efforts are intensified in the communities where HIV is the most heavily concentrated. The Strategy is careful not to endorse one prevention method, such as condom use, education or testing, over another. Instead, it insists that ‘overlapping, combination’ approaches that have been proven to work and are cost-efficient be used to target high-risk populations including gay men, black and Latino Americans and injecting drug users.
During the early years of the epidemic, the USA’s prevention efforts primarily targeted people most at risk of acquiring HIV. In the new millennium attention has also been placed upon people living with HIV. One particular programme, Advancing HIV Prevention (AHP), established by the CDC in 2003, had the aim of identifying undiagnosed HIV infections in order to prevent onward transmission.39 More recently, the National HIV/AIDS Strategy states that "prevention for people who are HIV-positive is critical to reducing new HIV infections".40 Necessary prevention efforts identified in the Strategy include testing, linkage to care and treatment and assistance with drug treatment, housing and mental health services.
The success of prevention efforts in the USA has been variable. One area where efforts have been particularly successful is the prevention of mother-to-child transmission.41 Routine HIV testing for pregnant women in many states, and good preventive interventions, mean that diagnoses of HIV in babies have dropped dramatically (from approximately 896 cases in 1992 to 38 cases in 2006).42
In 2009, just 4 percent of the domestic HIV/AIDS budget was spent on prevention, and this included prevention research.45 Yet, for every HIV infection prevented, $355,000 is saved in the costs of providing lifelong HIV care and treatment.46 47 A study conducted by the CDC, in partnership with John Hopkins University, makes a compelling case for increased HIV prevention funding. According to the study, which examined 5 possible 'scenarios' for the future of HIV prevention in the USA, those that assumed no increased funding for HIV prevention efforts predicted a possible 38 percent increase in the number of people living with HIV in the USA from 2010 to 2020.48 As a a result, maintaining current HIV prevention funding levels could cost anywhere between $128 billion to $237 billion in treatment and care costs for the US healthcare system. On the other hand, the study claimed that an investment in HIV prevention of $4.5 billion over ten years would save $104 billion in medical care costs.49
American health authorities are placing increased emphasis on the role that 'social determinants of health' such as a person's age, class, race, living environment and poor access to health care have on their risk of becoming infected with HIV.50 To reduce HIV infections among the worst affected groups, the CDC emphasises the need to address these structural factors, instead of focusing simply on behavioural prevention.
However, this emphasis has not prevented the USA from leading on the use of treatment as a form of prevention. In July 2012, the USA was the first country to approve an antiretroviral drug for use as a pre-exposure prophylaxis. The drug with the brand name ‘Truvada’ can now be prescribed for high-risk groups, such as the partners of HIV-positive people and gay men.51
HIV testing in the United States of America
In 2006 the CDC published a new set of guidelines on HIV testing which aimed to reduce the high number of people who do not know their HIV status and those who test late (around 1 in 3 of those who test positive for HIV are diagnosed with AIDS within a year).52 The guidelines call for automatic, routine HIV testing of all adults and adolescents attending a healthcare setting. The policy allows patients to opt out if they do not wish to take a test, but removes the need for written consent and pre-test prevention counselling, which were viewed as barriers to HIV testing. According to a study which looked at HIV testing laws in each state in the the USA, more than 90 percent of states have HIV testing laws that are compatible with the 2006 change.53 However, five states were found to still have HIV testing laws that not would allow for the CDC's recommendations to be implemented.
Early reports following the release of the new guidelines revealed reluctance by some health care workers to implement the strategy.54 However, in 2010 one of the most hard-hit areas in the United States, Washington D.C, reported a 26 percent rise in the number of people tested in the last 12 months following the implementation of routine testing and a marketing campaign among D.C residents to educate them about the new testing measures.55 Another study showed a significant increase in the number of people being tested for HIV but the increases observed varied drastically between different healthcare centres studied.56 Evidently, the success of the strategy depends on local resources and the leadership shown by the local Department of Health.
In 2010 the CDC announced an increase in funding for the country's HIV testing programme, bringing the total budget for three years to $142.5 million.57 58 Dr. Kevin Fenton, director of the CDC's National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Diseases and Tuberculosis Prevention, said:
"This expansion will help ensure that more Americans have access to what could be life-saving information about their HIV status."59
The CDC has estimated that 31 percent of people fail to go back to public testing sites to obtain their results,60 either because they forget, or because they lose the courage to return. In an effort to overcome this problem, the American government has invested large sums of money in the distribution of ‘rapid tests’. With a rapid test, the individual can be given their results on the same day, sometimes in as little as 20 minutes. This makes these tests particularly well suited for use in busy hospitals, or non-healthcare settings. Rapid testing plays a major role in the USA’s annual HIV testing day, which takes place on 27th June.61 In recent years, centres throughout the country have offered free rapid tests on this day.
Although mandatory HIV testing removes a person’s right to choice, it continues in certain sectors of American society.62 63 Whilst mandatory testing of immigrants ended in 2010, following the lifting of the HIV travel ban in January, all military personnel, and prison inmates in certain states, are still required by law to be tested for HIV.64 65
Mandatory HIV testing among prison inmates is criticised by human rights groups, AIDS organisations and the World Health Organisation, who state that mandatory testing can lead to the discrimination and segregation of HIV positive prison inmates.66 This is evident in the states of South Carolina, and until recently Alabama, where prisoners living with HIV are not entitled to apply for a prison job or be associated with community group pre-release programs.67 In a 2012 trial, led by human rights groups, it was asserted that mandatory testing is a prejudiced practice that does not adhere to the Americans with Disabilities Act and should therefore be prohibited.68 69 As there is very little evidence showing that mandatory testing in prisons is an effective public health measure, most AIDS organisations advocate a voluntary opt-out policy similar to that offered to pregnant women.70
AIDS and sex education in the United States of America
The level and type of HIV/AIDS education received by school children and students in the USA tend to vary depending on state regulations and the type of school or college. In some areas, sex education that incorporates information about HIV is comprehensive and compulsory. In others, it is not, and children may leave school knowing virtually nothing about HIV and AIDS.71 Twenty-five states mandate that abstinence before marriage be 'stressed' within STD/HIV education at schools.72
Since the Welfare Reform Law earmarked $100 million for abstinence only education in 1996, increased amounts of federal funding became available for this type of education, particularly under the presidency of George W. Bush. By 2007, over $1.5 billion had been spent on abstinence-only programmes.73
Abstinence only education encourages people to abstain from sex until after they are married, and does not teach people how to protect themselves during sex from disease and unwanted pregnancy. A number of studies have shown that abstinence only education is largely ineffective,74 75 and as a result, this form of sex education has proved controversial. Some states have rejected federal funding for abstinence only programmes in the past.
In his 2009 budget, Obama made a radical pledge to replace abstinence only education with funds for programmes that could “prove they delay sexual activity, increase contraceptive use and reduce teen pregnancy.”76 However, in 2010 the funding for abstinence-only education was not eliminated and $50 million a year was reallocated to programmes which teach abstinence only.77 This is a significant decrease from the record $176 million allocated in 2007 but was still a surprise for many who expected federal funding for abstinence only programmes to end. The budget also included $375 million for a ‘Personal Responsibility Programme’ funding stream, which includes both abstinence and contraception education. In particular, the teenage pregnancy initiative, which forms part of this new funding, encourages teenagers to delay having sex but provides information on protection if they are already sexually active. The Obama administration has not, therefore, abandoned abstinence-only sex education but has supplemented it with funding for more comprehensive initiatives.
Condom use in the USA has increased significantly in recent years. Between 1982 and 2002, the percentage of women who had ever used the male condom with a partner rose from 52 percent to 90 percent. Similar increases have been seen among young people. Despite this increase, however, 40 percent of American students report that they or their partner did not use a condom the last time they had sex while less than 10 percent used both a condom and another form of birth control at last sex.78 Such behaviour poses a risk because only condoms can prevent the transmission of sexually transmitted diseases (STDs), and HIV.
HIV and AIDS treatment and care in the United States of America
Antiretroviral treatment is available to anyone with good medical insurance in the USA. For those who are without insurance, or are underinsured for their condition, there are a number of options available to help fund treatment, including Medicaid, Medicare, and funding provided by the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act.79 Consistency of care for people living with HIV in the US has been found to be very low, with one study demonstrating that only a fifth of US-based HIV-positive people are sufficiently engaged in out-patient care.80
It is estimated that in the US the average cost of a lifetime of HIV treatment is $367,134 per person (in 2009 dollars).81The National HIV/AIDS Strategy admits "large numbers of uninsured and underinsured people with HIV mean that not everyone has sufficient access to HIV therapy".82 The Strategy places a strong emphasis on the impact of the health care reform bill, or the Affordable Care Act, on the future provision of HIV treatment. According to the Strategy, changes implicated in the Affordable Care Act such as expanded Medicaid eligibility, protection for people with pre-existing conditions that will allow them to access health insurance, and increased access to tax credits will greatly enhance access to HIV treatment and care when the changes come into force in 2014.83
Unfortunately for those underinsured, levels of funding have not always been sufficient to provide adequate treatment and care services for an ever-growing HIV positive population. The US AIDS Drug Assistance Program (ADAP), which aims to provide treatment for the very poorest through Ryan White CARE Act funding, was critically underfunded for many years. As of March 2011, there were 7,261 people on waiting lists in a total of 11 states.84
The costs of implementing the CDC's 2006 guidelines which recommend routine testing for HIV in all healthcare settings have been estimated at $2.7 billion over five years. Most of this will be the result of increased need for treatment and care services, and is likely to impact most heavily on the Ryan White Program.85 86
AVERT.org has more about AIDS treatment and care in the USA.
Stigma and discrimination
While HIV and AIDS today affect more people than ever before, the general attitude towards HIV has relaxed somewhat. Once a subject that caused considerable panic and hysteria in the media, HIV and AIDS in the USA is now comparatively overlooked by the press. This is in part due to the fact that HIV never became the generalised epidemic once feared, and also because the introduction of antiretroviral therapy in the mid-1990s signalled the end of HIV as a condition always considered fatal.
Legislation has contributed to the improvement of the lives of those living with HIV and AIDS in the USA. In 1986, the government made clear to employers that they would be prosecuted if they discriminated against HIV positive people. The ‘Americans with Disabilities Act’ now makes it illegal to discriminate against someone on the basis of their HIV status.87
However, stigma and discrimination in the USA persists and many HIV positive people find that they are discriminated against on a day-to-day basis. In 2007, a woman from New York State filed a lawsuit against a summer holiday camp after her 10-year-old son was turned away for having HIV.88 The National HIV/AIDS Strategy admits that "addressing stigma and discrimination is perhaps the biggest challenge we face". This is not surprising considering the misconceptions surrounding the transmission of HIV.89 One in three Americans aged 18-29 believe HIV can be transmitted either through sharing a drinking glass, touching a toilet seat, or swimming in a pool with someone who is HIV-positive. Among the general public, the percentage of people who have one of these misconceptions has not changed since 1987.90
In October 2009, President Obama announced that the USA's ban on entry into the country for HIV positive people would be lifted. The ban, which was instituted in 1987, had restricted all HIV positive people from entering the country, whether they were on holiday or visiting on a longer-term basis. The full removal of the ban took effect on January 4th, 2010. This meant that in 2012, the biannual global conference on HIV and AIDS could be held in Washington, as previously people living with HIV would not have been able to attend.
Spending on AIDS in the United States of America
The federal budget request for fiscal year (FY) 2011 included a total of $20.4 billion for domestic HIV and AIDS, a 4% increase from the FY 2010 funding, which totaled $19.6 billion. Of this, 69 percent is for care, 14 percent for research, 13 percent for cash and housing assistance, and 4 percent for prevention.91
Although spending on the domestic HIV epidemic has risen in recent years, many AIDS organisations say it remains inadequate. Cash shortages are particularly severe in Southern states, where the epidemic is newer, and funding has not yet been allocated to reflect the increase in cases. Recent changes to the Ryan White CARE Act were designed to address this problem, but have met with strong opposition from those in higher prevalence areas, who have suffered cuts in federal funding to pay for improved services in the South.92
The HIV/AIDS Strategy acknowledges the restricted funding and makes no commitments to increased funding. Instead, it places emphasis on focused resource allocation. Funding must therefore be targeted to the highest prevalence populations and communities, including high-risk populations such as gay men, Black and Latino Americans and injecting drug users.93
Of all the industrialised countries in the world, the USA is home to the largest number of people living with HIV. Tens of thousands of people are newly infected with HIV in the USA every year and although infection rates have declined among injecting drug users, there has been an alarming increase among men who have sex with men.94
An estimated 20,000 people died of AIDS in the USA in 2011 alone,95 yet increasingly AIDS is seen as an ‘overseas’ or an ‘African’ problem, rather than something that directly affects American citizens. The President’s Emergency Plan for AIDS Relief (PEPFAR) tends to receive greater attention and attract considerably more comment in the press than the work taking place within the USA.
When AIDS is mentioned on a national level, it is often in relation to the chronic funding shortages for AIDS services, or the epidemic among African Americans. AIDS continues to affect marginalised groups, and continues to receive nowhere near the attention or funding that is required to effectively tackle the problem.
There was renewed hope when Barack Obama became President of the United States in early 2009. However, only a few months after his inauguration, the AIDS Healthcare Foundation launched a campaign highlighting Obama's silent response to the Washington HIV statistics and prompting him into taking more action on AIDS.96 The first National HIV/AIDS Strategy released in July 2010 has been criticised by AIDS activists for failing to include commitments to increased funding.97 98
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