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History of HIV & AIDS in the U.S.

The Circle of Friends in the National AIDS Memorial Grove, San FransiscoThe history of HIV and AIDS in the USA began in 1981, when the United States of America became the first country to officially recognise a strange new illness among a small number of gay men. Today, it is generally accepted that the origin of AIDS probably lies in Africa. However, the USA was the first country to bring AIDS into the public consciousness and the American reaction undoubtedly contributed to the establishment of AIDS as one of the most politicised, feared and controversial diseases in the history of modern medicine - a reputation that stands today.

The history of HIV & AIDS in the United States of America in the 1980s

At the beginning of the 1980s various reports began to emerge in California and New York of a small number of men who had been diagnosed with rare forms of cancer and/or pneumonia. The cancer, Kaposi’s Sarcoma, normally only affected elderly men of Mediterranean or Jewish heritage and young adult African men. The pneumonia, Pneumocystis Pneumonia Carinii (PCP), is generally only found in individuals with seriously compromised immune systems. However, the men were young and had previously been in relatively good health. The only other characteristic that connected them was that they were all gay.

The first official documentation of the condition was published by the US Centers for Disease Control and Prevention (CDC) on 5th June 1981.1 Entitled “Pneumocystis Pneumonia – Los Angeles”, the report detailed the cases of five young gay men hospitalised with serious PCP, cytomegalovirus, and disseminated candida infections.

“I heard on UPI, it was like a paragraph or two, a very short report from the Centers for Disease Control that there was a new phenomenon of people dying of an unusual pneumonia, and they happen to be homosexual.” - Hank Wilson, living in San Francisco.2

Almost a month after the CDC’s announcement, the New York Times reported that a total of 41 homosexual men had been diagnosed with Kaposi’s Sarcoma, eight of whom had died less than 24 months after the diagnosis was made.3

At the end of 1981, 5 to 6 new cases of the disease were being reported each week.4

By 1982 the condition had acquired a number of names - GRID5 (gay-related immune deficiency), ‘gay cancer’, ‘community-acquired immune dysfunction’ and ‘gay compromise syndrome’6.

By June, 355 cases of Kaposi’s Sarcoma and/or serious opportunistic infections in previously healthy young people had been reported to the CDC.7 A total of 20 states had reported cases and the disease was no longer solely affecting gay men; there were a small number of cases among heterosexual men and women. Over half of those identified as heterosexual had used intravenous drugs at some point.

“By mid-1982 it was clearly different. People were starting to shake in their pants. It was clear that it was more than isolated incidents” - G’dali Braverman, AIDS activist living in San Francisco.8

It was not until July at a meeting in Washington, D.C., that the acronym AIDS (Acquired Immune Deficiency Syndrome) was suggested9. The CDC used the term for the first time in September 1982, when it reported that an average of one to two cases of AIDS were being diagnosed in the USA every day.10

In December the CDC reported that three heterosexual haemophiliacs had died after developing PCP and other opportunistic infections.11 There was nothing to suggest that the patients had acquired AIDS through homosexual contact, or intravenous drug use. What was significant was that all of the patients had received Factor VIII concentrates – a blood transfusion product made by pooling blood from hundreds of donors.

The CDC also began to receive reports of AIDS amongst a small number of migrants from the Caribbean island of Haiti.12 13 In the popular press, AIDS had become a disease of the “four H club” – homosexuals, heroin addicts, haemophiliacs and Haitians – even though there had been cases among people who did not fall into one of these groups.14

The inclusion of Haitians as a risk group caused much controversy. Haitian Americans complained of stigmatisation, officials accused the CDC of racism, and Haiti suffered a serious blow to its tourism industry.15 16

Stigma, discrimination and political inaction

From the outset, AIDS was associated with a high level of stigma and discrimination. This prejudice arose in part because AIDS was linked to groups, such as gay men and intravenous drug users, that were already highly stigmatised, but also because evidence-based information about what was causing AIDS, and how it might be passed on, was in short supply.

“…as the ‘80s started going along, after ’82, say ’83, ’84, more and more people were getting sick. Fear was gripping the city and the nation. Gay people stopped going out. Nobody knew how it was transmitted and people were afraid… These were people my age. It was frightening.” - Peter Groubert, living in San Francisco.17

While most of the scientists investigating AIDS already strongly suspected that it was related to sexual contact and the transfer of contaminated blood, there was no definitive evidence at the time to prove these were the only routes of transmission.

“The national authorities didn’t say nothing and people just kind of started developing their own theories. I knew a friend who thought it was blood. He thought it was when he went for an operation, don’t get a blood transfusion” - Robin Tichane, an artist living in San Francisco.18

Some medical professionals were reluctant to investigate the causes of AIDS further because of their prejudicial beliefs. Dr Joel Weisman, one of the first physicians to identify AIDS as a distinct condition, summed up the attitude of one of his colleagues by describing one of their conversations:

"I remember calling a person [in infectious diseases] to describe what was occurring. He said - and this was a theme very early on - 'I don't know what you're making such a big deal of it for. If it kills a few of them off, it will make society a better place’.”19

For a while the American government completely ignored the emerging AIDS epidemic. In a press briefing at the White House in 1982, a journalist asked a spokesperson for President Reagan “…does the President have any reaction to the announcement – the Center for Disease Control in Atlanta, that AIDS is now an epidemic and have over 600 cases?” The spokesperson responded - “What’s AIDS?”20 To a question about whether the President, or anybody in the White House knew about the epidemic, the spokesperson replied, “I don’t think so”.

"An entire political movement grew up around the silence of the Reagan administration. The AIDS activist movement took as its call to action 'silence equals death' because literally the silence of the Reagan administration was resulting in the deaths of thousands and thousands of gay men in our communities across the country." - Sue Hyde, National Gay and Lesbian Task Force21

While the government failed to respond to the epidemic, a number of non-governmental organisations were founded in the most affected areas of the USA such as The Kaposi’s Sarcoma Research and Education Foundation in San Francisco (later renamed the San Francisco AIDS Foundation) and, in New York, Gay Men’s Health Crisis (GMHC). In 1982 GMHC distributed 50,000 free copies of its first newsletter about the syndrome to hospitals, doctors, clinics and the Library of Congress.22

By the end of 1983 the number of AIDS diagnoses reported in the USA had risen to 3,064 and of these people 1,292 had died.23

On 22nd April 1984 The New York Times reported the head of the CDC - Dr. James Mason – as saying that he had reason to believe that French researchers had isolated the virus that causes AIDS.24 The researchers had named the virus LAV, for lymphadenopathy-associated virus.

“We cannot know for sure now that the LAV virus is the agent that causes AIDS, but the pattern it follows in the human body makes us believe it is”.25

Mason based his opinion on additional findings by the CDC and the National Institutes of Health in Bethesda, Maryland.

Margaret HecklerThe next day at a press conference in Washington, Margaret Heckler, Secretary of Health and Human Services under President Reagan, revealed that Dr. Robert Gallo and his colleagues at the National Cancer Institute had reason to believe that HTLV-III (LAV as named by the French researchers) was the virus that caused AIDS (HTLV-III was later renamed HIV). Heckler stated that there would soon be a commercial test available to identify the virus and a vaccine could be ready for testing within two years.26

By 1985 the US government had given five pharmaceutical companies licences to develop a test, and in March the first blood test for identifying antibodies to HIV was made commercially available.27 The test was produced by Abbott Laboratories, and soon began to be used in a number of blood transfusion centres.28 At this time 73 cases of haemophilia-associated AIDS had been reported.29 Today it is estimated that by 1986 (when a heat treatment was introduced to kill HIV in blood products), more than half of all haemophiliacs in the USA had become infected with the virus.30

On 17th September 1985 President Reagan publicly mentioned AIDS for the first time, when he was asked about AIDS funding at a press conference.

“I have been supporting it for more than 4 years now. It's been one of the top priorities with us, and over the last 4 years, and including what we have in the budget for '86, it will amount to over a half a billion dollars that we have provided for research on AIDS in addition to what I'm sure other medical groups are doing”.

Critics were quick to ask why, if AIDS had been a ‘top priority’ among the government, the president had not mentioned it in public before.31

President Reagan refused to advocate safer sex and condom use, choosing instead to press for a ban on HIV positive immigrants entering the country, then later sexual abstinence, as the keys to preventing the epidemic.32

On 3rd October 1985, the actor Rock Hudson died of AIDS. He was the first major public figure known to have died from an AIDS-related illness.33

In 1986 the Surgeon General's Report on AIDS was published. The report was the Government's first major statement on what the nation should do to prevent the spread of AIDS. The "unusually explicit" report urged parents and schools to start "frank, open discussions" about AIDS.34

ACT UP’s first demonstration took place on 24th March on Wall Street in New York. The group demanded access to treatment for AIDS, public education to stop the spread of AIDS, an end to AIDS discrimination and the establishment of a national policy on AIDS.35

By 1988 the group had almost 3,000 members, many of whom were infuriated that little was being done while their friends and relatives were dying.36

The first national, coordinated AIDS education campaign was not finally launched until 1988, when 107 million brochures entitled “Understanding AIDS” were mailed to every household across the country. By this point, nearly 83,000 cases of AIDS had been identified in the USA, and over 45,000 people had died.37 Six other nations had set up similar leaflet campaigns before the USA chose to do so.38

The introduction of antiretroviral treatment

In September 1986, early results from clinical trials involving AZT (zidovudine) – a drug that was first investigated as a cancer treatment – showed that it might slow the attack of HIV. The AZT clinical trial divided patients into two groups: one received AZT and the other received a placebo. At the end of six months, only one patient in the AZT group had died, while there were 19 deaths among the placebo group. The clinical trial was stopped early, because it was thought to be unethical to deny the patients in the placebo group a better chance of survival.39

In March 1987 the U.S. Food and Drug Administration (FDA) approved AZT as the first antiretroviral drug to be used as a treatment for AIDS.40

By 1988 frustration was growing over the length of time it had taken to approve AZT and the FDA’s slow progress in improving access to other experimental AIDS drugs. On 11th October 1988 more than a thousand ACT UP demonstrators descended on the FDA headquarters in Rockville, Maryland, demanding quicker and more efficient drug approval. Eight days later the FDA announced regulations to cut the time it took for drugs to be approved.41

In 1989 results from a major drug trial know as ACTG019 were announced. The trial showed that AZT could slow progression to AIDS in HIV positive individuals with no symptoms.42 These findings were thought to be extremely positive; on August 17th a press conference was held, at which the Health Secretary, Louis Sullivan said:

"Today we are witnessing a turning point in the battle to change AIDS from a fatal disease to a treatable one."43

The initial optimism was short-lived when the price of the drug was revealed. A year’s supply for one person would cost around $7,000, and many Americans did not have adequate health insurance to cover the cost. Burroughs Wellcome, the makers of AZT, were accused of ‘price gouging and profiteering’.44 45 In September, the cost of the drug was cut by 20 percent.

By August 1989, more than 100,000 people diagnosed with AIDS had been reported to the CDC.46 The proportion of AIDS diagnoses among women had increased, and smaller cities and rural areas were increasingly affected.

The history of HIV & AIDS in the United States of America in the 1990s

Ryan White with his mother, 1971-1990On April 5th 1990, Ryan White died. Ryan was a schoolboy who had become infected with HIV via a blood transfusion for his haemophilia. He had become well known in the 1980s as a result of his fight to be allowed to attend public school, from which he had been banned due to fears that other children 'might pick up AIDS'. Eventually, after months of legal battles, Ryan was allowed to return, but then faced considerable hostility from students and parents. Ryan spent the next seven years of his life publicly speaking about HIV and how those with the infection should not be feared.47

Following Ryan’s death, the American government implemented a new programme named after him – the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. Its aim was to improve the quality and availability of care for low-income, uninsured and underinsured individuals and families affected by HIV.

Members of Gay Men’s Health Crisis organised the Sixth Annual AIDS Walk in New York, which took place on 19th May 1991.48 The walk was estimated to raise $4.1 million, which would be put towards AIDS education and prevention programmes. Around 26,000 people turned up to walk the streets of the Upper West Side of Manhattan.

In 1991, American basketball player Earvin ‘Magic’ Johnson, Jr. announced that he too had HIV. Taking advice from his doctors he retired from professional basketball and planned to use his celebrity status to help educate young people about the disease. He said:

“I think sometimes we think, well, only gay people can get it – ‘It’s not going to happen to me’. And here I am saying that it can happen to anybody, even me, Magic Johnson”.49

Johnson’s announcement had a massive impact on the USA’s public awareness of AIDS; in the month after he revealed his status, the number of people being tested for HIV in New York City increased by almost 60 percent.50

Around 45,500 cases of AIDS were reported to the CDC in 1991.51 Ten years after the first cases of AIDS-related PCP were identified, AIDS had become the second leading cause of death among American men aged 25-44 years.52

In March 1993 the House of Representatives voted overwhelmingly to keep the ban of HIV infected people entering the USA,53 which had been in place since 1987.54 Thomas J. Bliley Jr., Republican of Virginia stated:

“Because HIV is always fatal, the public health consequences of allowing HIV individuals to immigrate is of the highest order… We have never before permitted immigration of those who were infected in the middle of an epidemic. We should not start now”.55

As well as immigrants, all HIV positive visitors were banned from entering the country. Despite President Clinton’s opposition to the ban, the Clinton administration made no apparent efforts to lobby against the House vote, believing it to be a lost cause.56

Controversy surrounded a condom campaign launched by the CDC and the Health and Human Services Department in early 1994.57 The campaign promoted condom use – a first in involving government agencies, state and local organisations – through a series of advertisements on national television networks, cable networks and radio stations. The advertisements were far more frank about sex and condoms than previous ones, which angered some who encouraged young people to abstain from sex. Lamar Smith, a Texas Republican called the advertisements:

“…an insult to the taxpayers who will be forced to pay for something they find personally and morally offensive”.58

On 11th November 1994, Pedro Zamora died from AIDS complications.59 After testing positive for HIV at 17 and graduating from high school a year later, Pedro travelled the country educating about HIV/AIDS. He became famous for his activism, testimony before congress and for his appearance on MTV’s reality television show, The Real World: San Francisco. After Pedro’s death, a number of organisations were created in his name and President Clinton publicly praised his AIDS activism.

“Pedro was particularly instrumental in reaching out to his own generation, where AIDS is striking hard. Through his work with MTV, he taught young people that ‘the real world’ includes AIDS and that each of us has the responsibility to protect ourselves and our loved ones” - President Clinton60

During the beginning of the 1990s, ACT-UP established two illegal underground needle exchanges for around 1,000 injecting drug users (IDUs).61 By providing sterile needles for IDUs, it was thought that the transmission of HIV among this group could be reduced.

By 1995 there were around 75 needle exchange programmes in 55 cities of the USA. Although an expert panel had concluded that providing sterile needles and bleach to IDUs was an effective way to reduce HIV transmission among IDUs,62 none of the programmes were legally entitled to any federal funding.

The non-governmental AIDS organisations continued to lobby the government on AIDS issues throughout the 1990s. They provided invaluable support to those living with and affected by HIV/AIDS. In 1995 Gay Men’s Health Crisis announced that a donation of $4 million would be used to open its own testing programme for HIV.63 AIDS Project Los Angeles aimed to reduce the incidence of unprotected sex amongst gay men by running an advertising campaign targeted at this group.64

A breakthrough in HIV treatment

Since the FDA approved AZT in 1987, thousands of HIV positive people had been prescribed the drug. However, results from a federal study in 1991 questioned its effectiveness. The study showed that those who took AZT before they had any AIDS-related symptoms lived no longer than those who delayed taking it until they showed symptoms.65 Many doctors were unsure whether to prescribe their patients the drug and confusion over the effectiveness of AZT escalated.

“I will tell my patients that one study suggests there is little or no benefit to taking AZT early and then let them make their decision” - Dr. Wayne Greaves, infectious disease specialist, Howard University, Washington.66

In 1991 the FDA approved a second nucleoside reverse transcriptase inhibitor (NRTI) - dideoxyinosine (ddI) - for treating patients who were intolerant or whose health had deteriorated while on AZT.67 At around the same time, a third antiretroviral drug – dideoxycytidine (ddC) - was authorised by the FDA, but only for investigational use in patients with AIDS and advanced AIDS-related complex.68

In January 1992 a study comparing the effectiveness of ddC against AZT was stopped. Early results showed that the number of deaths was higher amongst those taking ddC than those taking AZT.69

Later that year ddC was used in combination with AZT – the first successful use of combination drug therapy for the treatment of AIDS in the USA. The FDA approved the use of this new therapy for adult patients with advanced HIV infection who were continuing to show signs of clinical or immunological deterioration.70

By 1993 AIDS was reported as the fourth leading cause of death among women aged 25-44 years in the USA.71 In the same year it was reported that around 1,000-2,000 children were becoming infected with HIV every year through mother-to-child transmission.72

In November 1994 a study - ACTG 076 - showed that AZT reduced the risk of HIV transmission from infected mothers to their babies by two thirds.73 According to Dr Harold Jaffe of the CDC:

“It is the first indication that mother-to-child transmission of HIV can be at least decreased, if not prevented. And it will provide a real impetus for identifying more HIV-infected women during pregnancies so that they could consider the benefit of AZT treatment for themselves and their children.”74

This important discovery heightened the benefits of identifying HIV infected pregnant women. As a result, in 1995 the Public Health Service published guidelines recommending universal counselling and voluntary HIV testing of all pregnant women and treatment for those infected.75 The recommendations were widely implemented by health-care providers, resulting in a steep decline in infant infections.

During the first half of the 1990s, a number of studies had shown that HIV could quickly become resistant to AZT and that the drug had no benefit for those in the early stages of the disease. It was positive news therefore when the FDA announced on 20th November 1995 that the drug 3TC (lamivudine) had been approved for use in combination with AZT in treating AIDS and HIV.76 Clinical trials had shown that taking a combination of 3TC and AZT was more effective than taking AZT and ddC or AZT on its own.77 The trials had also shown that 3TC had less severe side effects than the others already on the market.78

Even though treatment had progressed in the past few years, the CDC announced that AIDS had become the leading cause of death amongst all Americans aged 25 to 44.79 Half a million people with AIDS had been reported to the CDC, over half of whom had died.80

At the end of 1995 there was a dramatic breakthrough in HIV treatment. The FDA approved saquinavir, the first of a new class of drug called protease inhibitors.81

“I strongly believe that as a class, these are the most active agents against HIV we have seen to date… This is about more than one drug. This represents the first of a set of drugs that will be coming along in the next 12 months that should really change how we treat AIDS and HIV infection” - Dr Kessler, Commissioner of Food and Drugs.82

Protease inhibitors were used in combination with one or two of the other NRTIs, in what was known as Highly Active Antiretroviral Therapy (HAART). Protease inhibitors attack a different part of the virus’s replication process and when taken in combination with NRTIs, are extremely effective in suppressing HIV – in some cases reducing the amount of virus in the body by 99 percent.83

At the time there was a reluctance to show any excitement about HAART, as early hopes about AZT had been dashed when people quickly developed resistance to the drug. However, it soon became obvious that HAART was going to be revolutionary in HIV treatment. It proved to significantly delay the onset of AIDS, and the life expectancy of HIV positive people was greatly increased. HIV infection was no longer thought of as a death sentence, but a manageable condition.84 In 1996 the FDA approved nevirapine, the first in another new class of drug known as non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs).85 These could also be taken in combination with NRTIs and widened the range of treatment options.

However, there were limitations to the drugs, such as side effects and the difficulties of taking a large number of pills each day,86 and it was still uncertain how effective the new treatments would be over the long term.

In 1997 it was reported that, for the first time since the start of the AIDS epidemic in 1981, the number of deaths from AIDS had dropped substantially across the USA.87 This decline was largely attributed to the effect of antiretroviral therapies on survival rates of those living with HIV. However, Dr John Ward, an AIDS expert at the CDC stated:

"The decline in deaths leaves more people living with AIDS and HIV infection. We do not want to be a wet blanket here, but we still need programs that assure good access to treatment and care for infected people."88

The history of AIDS in the United States of America since 2000

At the beginning of the new century, 774,467 persons with AIDS had been reported to the CDC - 448,060 of whom had died89. The HIV infection rate had failed to decline since the mid-nineties, highlighting the need for more effective prevention initiatives.

Prevention strategies in the 2000s

A report published by the Institute of Medicine (IOM) in September 2000 criticised the American government for its failure to implement appropriate HIV prevention services to decrease the number of new HIV infections. Harvery Fineberg, provost of Harvard University and co-chair of the committee that wrote the report, stated:

“Thousands of new HIV infections could be avoided each year if we gave greater emphasis to prevention, and were smarter in the way we spent our prevention dollars.”90

The report called for more federal funding for the most cost-effective prevention strategies, such as needle exchange services. The IOM report also criticised government spending on abstinence-only education; there is no evidence that such programmes are effective in preventing the spread of HIV.91

Although some of the report’s key recommendations were ignored, in 2001 the CDC set a goal to halve the number of people infected with HIV each year in the USA to 20,000.92 The target was set to be achieved by the end of 2005.

By 2003 it was already clear that the CDC’S goal would be missed - the number of new infections had shown no sign of declining.93 As a result, the CDC decided that a major change in HIV prevention strategies was needed. In April 2003 the CDC announced a new initiative called Advancing HIV Prevention: New Strategies for a Changing Epidemic – or AHP for short.94 Previously, the CDC had aimed its prevention efforts at “persons at risk of becoming infected with HIV by providing funding for…programs aimed at reducing sexual and drug-using risk behaviour”.95 In contrast, AHP would focus mainly on people who already had HIV but were unaware of their infection, in order to reduce onward transmission.96

In September 2006 the CDC published guidelines calling for routine HIV testing of all adults and adolescents attending healthcare services – a strategy that was mentioned in the AHP plan. The routine testing drive was an attempt to identify the estimated one-quarter of people living with HIV in the USA unaware of their infection.97 The President’s 2007 budget also increased focus on testing by requesting $93 million to purchase and distribute rapid HIV test kits for communities with the highest rates of newly discovered HIV cases.98

In 2006 only 5 percent of the domestic HIV/AIDS budget was spent on prevention,99 while there were still around 40,000 new HIV infections in the USA each year.

In 2007 the CDC stepped up its response to HIV among African Americans, who had been disproportionately affected by the AIDS epidemic for some time. Between 2000 and 2003 more than half of the HIV/AIDS diagnoses reported to the CDC were among black Americans, even though blacks represented only 13 percent of the population.100 In 2005 the rate of HIV/AIDS diagnoses among black females aged 13 years and older was 20 times the rate for white women.101

A report published by the CDC in June acknowledged that previous attempts at preventing HIV transmission among this group had been unsuccessful.102 The report therefore stated,

“A heightened national response, one that ignites focused, collaborative action among public health partners and community leaders, is vital at this time to reduce the toll of HIV/AIDS on blacks”.103

The San Fransisco AIDS walk in 2007On 15th July 2007 AIDS Walk San Francisco raised a record $4.5 million - the largest single-day AIDS fundraiser that had ever taken place in California.104 Around 25,000 people walked for 6 miles through Golden Gate Park to raise money for local HIV/AIDS service organisations. Across the country, hundreds of non-governmental organisations continued their invaluable work supporting those affected by AIDS.

By October 2007 the CDC had published a new general prevention strategic plan that would guide prevention efforts through 2010.105 The plan recognised how advances in treatment had improved the lives of many HIV positive individuals, but argued that the USA was not investing enough in prevention.

In January 2010, the travel ban which had banned HIV positive people from entering the US since 1987 was lifted.106

In June 2010, another long standing controversial HIV prevention measure was brought into the spotlight. Since 1983, a ban on gay men donating blood has been in place, justified by authorities as necessary because of the higher HIV prevalence among men who have sex with men. However, advocates argued that due to developments in HIV testing, the ban was “medically and scientifically unwarranted” and as a result is discriminatory against men who have sex with men. On June 11th, the Department of Health and Human Services voted to recommend that the ban be upheld.107

In July 2010, the USA's first HIV/AIDS Strategy was released.108 Reducing new HIV infections was included as one of the Strategy's three core aims. In order to reduce new infections without an increase in funding, the Strategy recommended that HIV prevention efforts be intensified in the communities where HIV is the most heavily concentrated. Prevention efforts that target 'high-risk populations' such as gay men, and black and Latino Americans were identified as key to the strategy, as were prevention efforts which target those already infected with HIV so as to ensure reductions in onward transmission.

That year as well it was clear that the CDC was committed to looking at a wider range of prevention needs, including tackling the 'structural' determinants of HIV risk' or the 'social determinants of health'. These include a person's age, class, race, living environment and poor access to health care. The Strategy included reference to these social determinants and in 2010 the CDC also released a framework which detailed how it aimed to include addressing social determinants of HIV risk in its overall design of public health programs.109

Treatment access and development in the 2000s

The new millennium saw important advances in HIV treatment. By 2003 a new drug had been developed that prevented HIV from entering human immune cells. Enfuvirtide - an ‘entry inhibitor’ - was approved by the FDA on 13th March - seven years since the last approval of a new drug class.110 The drug could be used in combination with other anti-HIV medications to treat advanced HIV infection. As enfuvirtide worked in a different way to other antiretroviral drugs, there was more hope for those who had developed resistance to the existing medications.

Yet although there was optimism about the advances in treatment options, a report published by the IOM in March 2002 highlighted the disparities in access to healthcare services for racial and ethnic minorities.111 Of particular concern were the apparent inequalities in access to AIDS treatment for African Americans. The report found that even when money was not a factor, African Americans were less likely to be given the most advanced treatments for HIV than whites.112

“The IOM report found that the discrepancy in HIV/AIDS care is particularly blatant. Many of the minorities affected by HIV/AIDS are members of the working poor, who lack health insurance and have limited access to health care, including HIV testing and prevention methods. Further, a lack of prevention programs targeting communities of color hampers African Americans’ ability to protect themselves”.113

The racial divide in access to treatment added to the problems that the epidemic was posing for the black community. African Americans were not only at a greater risk of HIV infection, but also were facing barriers to testing, treatment, and HIV prevention education.114

By 2004 it was estimated that around 50 percent of Americans receiving antiretroviral therapy were infected with a strain of HIV that was resistant to at least one of the available drugs.115 The treatment options for many patients were dwindling and the transmission of the drug-resistant virus was an increasing concern.

On 19th December 2006, President Bush signed the reauthorisation of the Ryan White HIV/AIDS Program.116 Since its creation in 1990 the program had provided federal funding for thousands of Americans living with HIV/AIDS unable to pay for their treatment themselves.

“This legislation focuses on life-saving and life-extending services and increased accountability, and will provide more flexibility to the Secretary of Health and Human Services to direct funding to areas of greatest need” - President Bush.117

However, the 2006 reauthorisation caused much controversy, as five new cities were to receive funding, even though there was no increase in the overall financing of the programme.118 There was also a shift of funding to rural areas and the South, taking money away from areas where the epidemic began, such as San Francisco and New York.119

On 12th July 2006 the first once-a-day single combination pill for the treatment of HIV was approved by the FDA.120 Atripla tablets – a fixed-dose combination of efavirenz, emtricitabine and tenofovir – were designed to simplify treatment regimes.

Maraviroc, a second entry inhibitor, was approved by the FDA on 6th August 2007.121 As the drug worked in a novel way by blocking the CCR5 receptor – the most common route of entry for HIV into uninfected cells – it received priority review by the FDA.

“This is an important new product for many HIV-infected patients who have not responded to other treatments and have few options” - Steven Galson, M.D., M.P.H., director of FDA’s Center for Drug Evaluation and Research.122

A few months later, another drug – raltegravir – was approved by the FDA.123 Raltegravir was the first of a new class called integrase inhibitors.124

The significant progress in treatment proved to be particularly important to thousands of HIV positive Americans whose treatment had been failing due to drug resistance. The developments were described by some as comparable to the introduction of HAART in the mid-1990s and would “provide extended years of meaningful survival to patients” – Dr. Hammer, chief of infectious disease at Columbia University.125

In July 2008 the Senate Appropriations Committee passed the Financial Services appropriations bill for 2009, which included an allocation of $1.4 million to develop a National AIDS Strategy.126 In April 2010, the Office of National AIDS Policy released a report summarising feedback from community discussions held in 14 sites across the U.S intended to inform the the development of the strategy.127 Since the USA has never had such a strategy, hundreds who had been campaigning for it welcomed the plan.

“We are incredibly encouraged to see bodies within both chambers of Congress support the development of a National AIDS Strategy which will facilitate continuity of the domestic governmental response to the epidemic, ensuring resources and efforts are maximised… We strongly believe the National AIDS Strategy will help reduce the number of new HIV infections in this country, improve support services and the quality of lives for people living with HIV/AIDS” - Dr. Marjorie Hill, Chief Executive Officer at Gay Men’s Health Crisis (GMHC).

President Obama signed the Ryan White HIV/AIDS Treatment Extension Act in October 2009.128 The legislation authorized the Act until 2013.129

The USA's first HIV/AIDS Strategy was released in July 2010.130 The Strategy placed a strong emphasis on the impact of the Affordable Care Act (the health reform bill) on dealing with health inequalities. Changes implicated in the Affordable Care Act that were mentioned in the Strategy included expanded Medicaid eligibility, protection for people with pre-existing condition or chronic illnesses (such as HIV/AIDS) that will allow them to access health insurance, and increased access to tax credits.

At the end of December 2010, the number of HIV positive people on waiting lists for HIV treatment through the AIDS Drug Assistance Program (ADAP) had reached 4,543 in a total of 9 states.131

In early 2013, guidelines were updated to recommend that HIV treatment is initiatied in all patients diagnosed as HIV-positive, but prioritising those with CD4 cell counts of 500 or less, rather than the previous 350 or less. This increases the number of patients on ART, but evidence shows that early initiation of treatment leads to greater control of the HIV virus.132 133

In August 2013, the FDA approved the first rapid HIV test. It detects both HIV-1 p24 antigens, and antibodies to HIV-1 or HIV-2. It is hoped that people will be able to begin treatment more quickly, as a test like this will increase earlier HIV diagnoses in the country.134

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