HIV and AIDS in America

Since the beginning of the HIV and AIDS epidemic well over half a million people have died of AIDS in America¹  – the equivalent of the entire population of Las Vegas. There are currently more than one million people living with HIV and AIDS in America and around a fifth of these are unaware of their infection,² posing a high risk of onward transmission.
America’s response to the AIDS epidemic has produced mixed results. HIV prevention efforts have not always been successful and every year approximately 56,000 Americans are infected with HIV.³ In March 2009 Washington DC reported an HIV prevalence of at least 3% among people over 12 years - similar to rates in some parts of sub-Saharan Africa.⁴
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, which shows little sign of abating.

Who is affected by AIDS in 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 America were men who have sex with men, injecting drug users, haemophiliacs and Haitians. 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.

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	% of AIDS diagnoses in 20075	% of population in 20076
White	30%	66%
Black/African American	49%	12%
Hispanic/Latino	19%	15%
Asian	1%	4%
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% of AIDS related deaths. ⁷ 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 America. The number of deaths from AIDS among Hispanics/Latinos has remained relatively stable since the beginning of the new millennium, even though there has been a decline in overall AIDS mortality in America.⁸ Language barriers, cultural factors, migration patterns and lack of regular health care have been identified as barriers to HIV treatment and prevention among the Hispanic/Latino community.⁹ In New York City, where 40% of all households are made up of of Latinos born outside the U.S, the majority of health and civil society organisations cite a lack of bilingual and culturally sensitive HIV and AIDS services for the large Hispanic/Latino community as a key obstacle to dealing with the city's epidemic.¹⁰

Pedro Zamora, who died of AIDS in 1994

Men who have sex with men: At the beginning of America’s epidemic, AIDS primarily affected men who have sex with men (MSM). Today, MSM still account for around two-thirds of HIV diagnoses among male adults and adolescents.¹¹ There have been concerns that an increasing number of MSM are having unprotected sex, leading to a rise in the number of new HIV infections among this group.¹²  The CDC has reported that between 2001 and 2006, HIV and AIDS diagnoses among MSM increased by 8.6 percent.¹³ It is thought that the availability of antiretroviral treatment may have lessened the fear surrounding AIDS, leading to complacency about using condoms.¹⁴ This complacency is evident in Washington D.C, where a study by the city's HIV/AIDS Administration revealed 40% 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.¹⁵
Injecting drug users: Injecting drug users (IDUs) have accounted for around a quarter of all AIDS diagnoses in America.¹⁶ Throughout the epidemic, prevention efforts amongst 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 America these programmes have proved to be successful in reducing the rate of HIV transmission.^{17 18} HIV transmission decreased by 9.5 % between 2001 and 2006.¹⁹ The ban on federal funding for needle exchanges was lifted in 2009.

Geographical variations

The HIV/AIDS epidemic in America was once concentrated mainly in the gay populations on the East and West coasts. However, in recent years AIDS has become increasingly prevalent within black and Latino communities in many Southern states. 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.²⁰

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• lowest

HIV and AIDS prevention in America

During the early years of the epidemic, America’s prevention efforts primarily targeted people most at risk of acquiring HIV. In the new millennium more focus has been placed upon people living with HIV. One particular programme, Advancing HIV Prevention (AHP), established by the CDC in 2003, has the aim of identifying undiagnosed HIV infections in order to prevent onward transmission.²¹ Although AHP is rarely referred to by name today, its principles persist in America’s prevention strategy.
The success of prevention efforts in America has been variable. One area where efforts have been particularly successful is the prevention of mother to child transmission.²² Routine HIV testing for pregnant women in many states, and good preventive interventions, mean that diagnoses of HIV in babies have dropped dramatically.
In other areas, prevention efforts have had less of an effect and while combination antiretroviral treatment has helped to dramatically reduce the number of people developing and dying of AIDS in America, there are still around 56,000 new HIV infections every year.²³ Some blame America's worsening AIDS epidemic on the CDC and ineffective leadership in Washington.

"The fact that Washington DC's HIV prevalence rate is now higher than some hard-hit African countries is an indictment of how the CDC has failed to lead in HIV prevention efforts". - Michael Weinstein, President of AIDS Healthcare Foundation²⁴

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.²⁵
For more information about prevention in America visit the HIV and AIDS prevention in America page.

HIV testing in America

HIV testing at a community outreach day in America

There is a clear need for improved HIV testing initiatives in America. Estimates suggest that around 20 percent of those infected with HIV are unaware of their status and around 38 percent of people diagnosed with HIV are diagnosed with AIDS within a year.²⁶
In September 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.²⁷ 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 lengthy pre-test prevention counselling, which were viewed as barriers to HIV testing. It is too early to tell whether this policy will be successful; early reports have revealed reluctance by some healthcare workers to implement the strategy.²⁸
The CDC has estimated that 31 percent of people fail to go back to public testing sites to obtain their results,²⁹ 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 now plays a major role in the USA’s annual HIV testing day, which takes place on 27th June and is sponsored by the National Association of People with AIDS (NAPWA). In recent years, centres throughout the country have offered free rapid tests on this day. More about National HIV Testing Day can be found on NAPWA’s website.
There are certain sectors of society who are required by law to be tested for HIV, such as immigrants and military personnel. In some American states mandatory testing policies also apply to prison inmates. This has been criticised by the World Health Organisation, human rights groups and AIDS organisations, as it removes the basic human right of choice and can lead to the discrimination and segregation of HIV positive prison inmates.³⁰ There is currently very little evidence showing that mandatory testing in prisons is effective as a public health measure, so most AIDS organisations advocate a voluntary opt-out policy similar to that offered to pregnant women.
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.³¹ 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." ³²

AIDS and sex education in America

Education is an important part of HIV prevention. It is vital not only for teaching people affected by HIV/AIDS about treatment and care, but also for educating people about the ways in which HIV is transmitted and how to minimise the risk of infection. This can help to reduce the number of new infections and can assist in combating stigma.
The level and type of HIV/AIDS education received by school children and students in America 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.
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. Abstinence only education encourages people to abstain from sex until after they are married, and unlike comprehensive sex education, it 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,³³ and as a result, this form of sex education has proved controversial. Many AIDS and sexual health organisations advocate a more comprehensive approach that includes information about condoms and general discussion of teenage sexual relationships.
AIDS education amongst adults is used as a prevention tool in America, particularly in communities where HIV levels are high. Discussion of AIDS in the workplace, or at community meetings and religious gatherings, can provide essential information to adults who might otherwise be unaware that they are at risk. Due to the increasing number of new HIV infections among people over 50 years old, some communities have started to provide AIDS education for the older generation.³⁴

HIV and AIDS treatment and care in America

Antiretroviral treatment is available to anyone with good medical insurance in America. 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.³⁵
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. By June 2004 there were 1,629 people waiting for AIDS drugs in 11 states.³⁶ These waiting lists were not fully cleared until September 2007 and soon reappeared. As of May 2010, there were more than 1,100 people on waiting lists in a total of 10 states.³⁷
Those with advanced HIV infection who need newer, more expensive AIDS drugs to keep their condition under control may also face problems with obtaining funding from their insurance company. This said, ‘expanded access’ trials of new antiretroviral drugs for people who have exhausted their treatment options are regularly conducted across America, extending the lives of many who might otherwise die of AIDS.³⁸ This is a legacy of strong activism in the early days of the epidemic that encouraged better and more rapid access to new drugs.
AVERT.org has more about AIDS treatment and care in America.

Stigma and discrimination

'I have AIDS please hug me' poster

While HIV and AIDS today affect more people than ever before, the general attitude towards AIDS has relaxed somewhat. Once a subject that caused considerable panic and hysteria in the media, AIDS in America is now comparatively overlooked by the press. This is in part due to the fact that AIDS never became the generalised epidemic once feared, and also because the introduction of antiretroviral therapy in the mid-1990s signalled the end of AIDS as a condition always considered fatal. Better knowledge of transmission routes and risk factors has also helped to calm fears.
Legislation has contributed to the improvement of the lives of those living with HIV and AIDS in America. 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.³⁹
However, stigma and discrimination in America does persist 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.⁴⁰
In October 2009, President Obama announced that America's ban on entry into the country for HIV positive people, would be lifted.⁴¹ The ban, which was instituted in 1987, restricted all HIV positive people from entering the country, whether they were on holiday or visiting on a longer-term basis. Those who did not hold an approved medical waiver form (which was often difficult to acquire) risked being barred entry or deported if they test HIV positive or were found to be carrying antiretroviral medication. In his speech, the President said:

"Twenty-two years ago, in a decision rooted in fear rather than fact, the United States instituted a travel ban on entry into the country for people living with HIV/AIDS. Now, we talk about reducing the stigma of this disease - yet we've treated a visitor living with it as a threat. We lead the world when it comes to helping stem the AIDS pandemic - yet we are one of only a dozen countries that still bar people from HIV from entering our own country". - President Barack Obama⁴²

The full removal of the ban took effect on 4th January 2010.⁴³

Spending on AIDS in America

The federal budget request for fiscal year (FY) 2011 includes a total of $20.5 billion for domestic HIV and AIDS, a 5% increase from the FY 2010 funding, which totaled $19.4 billion. Of this, 69 percent is for care, 11 percent for research, 10 percent for cash and housing assistance, and 3 percent for prevention.⁴⁴
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.⁴⁵

Conclusion

The NAMES Project AIDS quilt

Of all the industrialised countries in the world, America is home to the largest number of people living with HIV. Tens of thousands of people are newly infected with HIV in America 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.⁴⁶
Over 14,500 people died of AIDS in 2007 alone, 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 America.
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. With the exception of the reduction in mother-to-child transmission in recent years, the news is rarely good. AIDS continues to affect marginalised groups, and continues to receive nowhere near the attention or funding that is required to effectively tackle the problem

References:

1. Centers for Disease Control and Prevention (2009), HIV/AIDS Surveillance Report 2007, (Vol. 19)
2. CDC 'HIV Prevalence Estimates -- United States, 2006' MMWR 57(39), 3 October 2008
3. Hall, H.I. et al (2008, 6th August) 'Estimation of HIV incidence in the United States' JAMA 300(5)
4. The Washington Post (2009, 15th March) 'HIV/AIDS rate in D.C. hits 3%'
5. Centers for Disease Control and Prevention (2009), HIV/AIDS Surveillance Report 2007, (Vol. 19)
6. United States Census Bureau ‘2007 American Community Survey’.
7. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report 2007, (Vol. 19)
8. The Henry J. Kaiser Family Foundation (2008, May) ‘HIV/AIDS policy fact sheet: Latinos and HIV/AIDS’.
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10. Latino Commission on AIDS (2009) 'New York State Responds to the Latino HIV/AIDS Crisis and Plans for Action'
11. Centers for Disease Control and Prevention (2009), HIV/AIDS Surveillance Report 2007, (Vol. 19)
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14. CDC (2007, June) ‘HIV/AIDS among men who have sex with men’.
15. The Washington Post (2010, March 26th) 'Study of gay men in the District finds 14% are HIV positive'
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20. Statehealthfacts.org  ‘New AIDS cases, reported in 2007’. The Henry J. Kaiser Family Foundation.
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25. Campaign website: www.changeaidsobama.com
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32. United Press International (2010, 2nd April) 'CDC increases HIV testing program'
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34. CDC (2008, February) ‘HIV/AIDS among persons aged 50 and older’.
35. The Henry J. Kaiser Family Foundation (2007, March) ‘Fact sheet: Ryan White Program’.
36. The Body (2004, June 8th) ‘More Than 1,600 People on 11 State ADAP Waiting Lists, NASTAD Report Says’.
37. The National Alliance of State and Territorial AIDS Directors (NASTAD) (2010, May) 'National ADAP Monitoring Report'
38. Huff, B (2006, January – March) ‘Uncertain future for early access?’ Treatment Issues: Newsletter of current issues in HIV/AIDS. Vol. 20 No. 1,2 & 3. Gay Men’s Health Crisis.
39. The U.S. Equal Employment Opportunity Commission (2005, 17th October) ‘Questions and answers about the association provision of the Americans with Disabilities act’.
40. POZ.com (2007, 26th July) ‘Summer camp sued for barring positive 10-year-old’.
41. President Obama's speech (2009, 30th October) 'Remarks by the President at signing of the Ryan White HIVAIDS Treatment Extension Act of 2009'
42. President Obama's speech (2009, 30th October) 'Remarks by the President at signing of the Ryan White HIVAIDS Treatment Extension Act of 2009'
43. Office of the Federal Register (2009, 2nd November) '74 FR 56547 - Medical examination of aliens-removal of Human Immunodeficiency Virus (HIV) from definition of communicable disease of public health significance', Federal Register Vol. 74, Issue 210
44. The Henry J. Kaiser Family Foundation (2008, April) 'U.S. federal funding for HIV/AIDS: The FY 2011 budget request'.
45. The New York Times (2007, 1st August) ‘HIV patients anxious as support programs cut’.
46. MMWR (2008, 27th June) ‘Trends in HIV/AIDS diagnoses among men who have sex with men – 33 states, 2001-2006’.