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HIV Treatment in the U.S.
In the initial years of the AIDS epidemic in the United States of America, treatment for people diagnosed with AIDS consisted mainly of suppressing opportunistic infections, offering pain relief and providing emotional support. For more than a decade, the only real options for HIV positive people were suboptimal single or dual antiretroviral therapies, experimental drugs, emotional support and palliative care.
The very first medicine specifically for HIV was introduced in the US in 1987. AZT (also known as zidovudine or Retrovir) was a drug that had previously been used (unsuccessfully) to treat cancer. Though the drug had toxic side effects and was initially prohibitively expensive, for most people with AIDS it offered the only chance of survival. Additional drugs were introduced in the late 1980s and early 1990s, but it was only with the advent of protease inhibitors in 1996 that truly effective “triple combination” therapy became possible, and people were able to suppress HIV on a long-term basis.
Since this time, millions of HIV positive Americans have taken combination therapy to keep their HIV infections under control. Though life for many HIV positive people in the USA may not be as difficult as for those living in poorer parts of the world, there are still many challenges. Aside from having to face discrimination - both socially and in the employment market – many also struggle to afford and access antiretroviral treatment and general HIV care.
How is medical care funded in the United States of America?
The American healthcare system is principally financed by medical insurance schemes. These fall into three primary categories:
- Private work-based schemes, run either directly by the employer, or through a union.
- Government funded programmes (such as Medicaid and Medicare) available to over-65s, those on limited incomes and people with disabilities.
- Private health insurance, purchased by individuals that are self-employed, or have no work-based scheme available to them.
In theory, every American citizen should be covered by one of these three types of insurance. In practice, around 47 million Americans are uninsured – approximately 15% of the population. Around 8.7 million of these are children.1 For those living with HIV access to health care is even more limited; less than one in five people living with HIV in the USA have private insurance and a third do not have any health coverage at all.2
Uninsured people are usually those who do not receive medical insurance through work, but are earning too little to afford private insurance, and too much to qualify for a government funded scheme. Some may also be unemployed or retired (not all work-based schemes continue beyond retirement).
Unfortunately, because most are on a low income and have poor living conditions and stressful lives, the uninsured are one of the groups most likely to suffer from ill health. Doctors working in Emergency Departments (who are, by law, required to provide emergency healthcare, regardless of ability to pay) have estimated that about one in three patients that they see are uninsured. Around 55% of emergency healthcare costs are never reimbursed because patients lack adequate insurance, placing a huge financial strain on hospitals who must recoup their costs from the insurance company reimbursements that they do receive.3
Many without adequate health coverage will avoid accessing healthcare services until absolutely necessary. This will often result in very sick people arriving at clinics or emergency departments in need of intensive or lengthy care that they simply cannot afford. Subsequent financial problems can lead to further avoidance of medical services, and further ill health, thus perpetuating a vicious cycle. It is perhaps unsurprising that unpaid medical bills remain the leading cause of personal bankruptcy in the USA.4
When a person is living with HIV, the problem may be even worse. For someone with advanced HIV disease, any delay in treatment can have a very serious impact on their health and their long-term prognosis. If the patient is unaware they have HIV, a delay in diagnosis may also mean that they infect more partners than they perhaps would have otherwise.
How do people on low-incomes access HIV/AIDS treatment and care?
Care for people with HIV/AIDS needs to be given on several levels. The most obvious necessity today is antiretroviral treatment, which helps to prevent people from developing opportunistic infections and other conditions associated with AIDS. However, during their lifetime, HIV positive people may find they need to access many other care services. They may need to stay in hospital for a while when sick, access sexual health services or obtain treatment for antiretroviral drug side-effects. HIV positive pregnant women may require extra care, and those with weakened immune systems may find they require treatment for minor ailments more frequently.
Unfortunately, AIDS is a condition that particularly affects the poorer and more disadvantaged sectors of American society. While a few are able to cover the costs of their care through a good private medical insurance scheme, a large number must find another way to pay for their treatment. For the uninsured, or underinsured (those whose insurance does not stretch to certain services such as antiretroviral treatment, or extended hospital stays), enrolment on a government-run scheme may be an option. For those who do not qualify for such schemes however, paying out of pocket or going into debt is often the only choice.
The two main government healthcare schemes are Medicare and Medicaid. Care for HIV positive individuals through these schemes is largely funded by The Ryan White Program, the main source of specific AIDS funding in the USA. The Ryan White Program also finances the AIDS Drug Assistance Program (ADAP), for those individuals who are unable to afford antiretrovirals. Disability allowance from Social Security as well as housing and other care support from HOPWA (Housing Opportunities for Persons with HIV/AIDS Program) may also be available to HIV positive individuals.
The National HIV/AIDS Strategy, released in July 2010, recognises that a substantial amount of HIV positive people, or one third of those who test positive in the USA and are aware of their status, are not in care.5 One consequence of this is that they may not be receiving regular viral load testing to monitor their health. In the Southern states alone, it is estimated that a higher percentage (more than half) are not in care.6
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. Changes implicated in the Affordable Care Act include 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.7 8
Medicaid and Medicare
Medicaid, a medical assistance benefits programme for those on a low income, has played a significant role in HIV care since the beginning of the AIDS epidemic in the USA. Today around four in ten people living with HIV and receiving care are covered by Medicaid.9 In 2008 Medicaid spending on HIV totaled $7.5 billion, making it the USA’s largest source of public financing for HIV/AIDS.10
Medicaid coverage is free, though in many states antiretroviral medication will only be provided if a person has an official diagnosis of AIDS (at which point they are considered disabled). This means they have had a common AIDS-related opportunistic infection, or have a CD4 cell count below 200. As treatment is generally more effective when started at higher CD4 counts before a person becomes sick, this rule can prove detrimental to patient health. A bill to immediately abolish the AIDS diagnosis restriction through the 'Early Treatment for HIV Act' has been considered several times by Congress but it was not included in the final version of the health reform bill, 'The Patient Protection and Affordable Care Act', passed under the Obama administration.11
Medicaid eligibility and benefits are currently decided at state level and therefore vary from state to state. According to one report which criticises the response to the AIDS epidemic in the South, Medicaid eligibility in the Southern states is the most restrictive compared to the country as a whole. Benefits received by those who claim Medicaid in the South are also limited and this is thought to account for "significant barriers to medical and mental health care for people living with HIV/AIDS" in some Southern states.12However, the expansion of Medicaid, which forms part of the health reform bill, increases access to HIV treatment and care by raising the eligibility threshold. Those with an income up to 133% above the federal poverty line ($14,400 for an individual and $29,300 for a family of four)13 will be eligible for Medicaid when this expansion comes into force in 2014.14
Medicare is a low-cost medical insurance programme that provides health insurance to people who are 65 and older and for younger adults with permanent disabilities. An estimated 100,000 people living with HIV are covered by the scheme, the equivalent to approximately one in five people receiving HIV care in the USA.15 Medicare spending on HIV totaled $4.5 billion in 2008 and was expected to reach $4.8 billion in 2009.16
The Ryan White Program
The Ryan White Program (formally known as the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act) was passed in 1990, a few months after its namesake, the teenager Ryan White, died of AIDS. The act was designed to improve the quality and availability of AIDS care for all, particularly for the uninsured and underinsured. The programme provides care and support services to those affected by HIV/AIDS and reaches more than half a million people with HIV each year.17 After Medicaid and Medicare, it is the third largest source of federal funding for HIV in the USA.
Financial allocations for the programme are set each year in the federal budget when overall spending on health and HIV/AIDS is decided. It is administered by the US Department of Health and Human Services and funds a number of individual programmes:
- Part A provides grants to the local governments of metropolitan areas that are disproportionately affected by AIDS and HIV (such as the cities of San Francisco and New York). These grants fund a variety of medical and support services that have contracts with the local government.
- Part B provides grants at a state level and is designed to improve the quality, availability and organisation of AIDS support and healthcare services. A large proportion of Part B is also earmarked to fund state AIDS Drug Assistance Programs (ADAP – see below).
- Part C supplies direct grants to individual organisations and outpatient care clinics for early intervention services and capacity development. Seventy-five percent of Part C grants must be spent on strengthening core medical services.
- Part D grants fund family-centred comprehensive care services, and services for women and young people (who were sometimes left out in the early years when AIDS primarily affected gay men). They also improve access to clinical trials and other forms of AIDS research.
- Part F is made up of a number of components including programmes to improve dental health amongst HIV positive people, a programme that supports research into innovative models of HIV care, a programme to promote the education and training of healthcare professionals in HIV and AIDS, and a programme to address the disproportionate impact of HIV/AIDS on women and minorities.18
The Ryan White Program proved controversial when it was reauthorized in 2006.19 The reorganisation changed the way that funding was allocated through Part A, placing more emphasis on metropolitan areas with lower populations and new and increasing epidemics, rather than large cities that had been tackling AIDS for many years. While this was welcomed by those in many Southern states where the AIDS epidemic has only recently emerged and affects rural as well as urban populations, it was less popular with cities such as New York and San Francisco.20 These areas would have experienced severe funding cuts, particularly in the fourth and fifth years of the proposed five-year reauthorization. Eventually the programme was only reauthorized for three years, saving the cities from the most serious funding cuts, though some areas have still experienced financial difficulties following the change.21 22
In October 2009 President Obama signed the Ryan White HIV/AIDS Treatment Extension Act.23 The legislation authorizes the Act for the next four years.24 In 2010, the U.S Department of Health and Human Services released $1.84 billion in grants to the Ryan White Program, adding to the $2.3 billion already allocated for that year.25
AIDS Drug Assistance Program (ADAP)
ADAP is funded through Part B of the Ryan White Program and is designed to supply drugs to those who have no other means of obtaining them. ADAP provides antiretrovirals and drugs for opportunistic infections and HIV-related conditions and also purchases or maintains health insurance for clients as this can often be cheaper than funding ongoing medication.26 Often people will sign up to ADAP while they are waiting for their Medicaid or Medicare applications to be processed. Others will use ADAP because they are ineligible for these programmes. It is estimated that around one in four HIV positive people in care in the USA receive their medication through ADAP.27 Enrollment has been increasing rapidly since ADAP’s inception in 1996. For example, in 2008, 1,554 new clients were added to the programme each month.28
Although ADAP has helped many thousands of people with HIV, it has a history of being underfunded and can become dependent on creating waiting lists to keep down costs. In June 2004, at the peak of the crisis, there were 1,629 people waiting for AIDS drugs in 11 states.29 Commenting on the situation in his own state, Dr. Faisal Khan, director of West Virginia's HIV/AIDS/STD programme said: “People are now starting to die while they're on the waiting list. It is a crisis that will continue.”30
Since 1996, the national budget for ADAP has increased eight fold but the number of people enrolled and needing treatment has also been increasing. Most state drug assistance programmes have more people enrolled than are served. For example, in June 2009, only three quarters of the 168,707 people enrolled in the programme received medications.31
Following the peak of the ADAP funding crisis in 2004, the number of people on waiting lists reduced as more funding was allocated to ADAP and some cost cutting measures introduced. However, the waiting lists were not fully cleared until September 2007 and started to reappear soon afterwards. The financial crisis worsened the problem as more people began to rely on a limited number of public health programmes. As of mid-July 2011, there were 8,689 people on waiting lists in a total of 13 states.32 Limited state contributions to ADAP funding have been partly blamed for the funding shortfalls and resulting poor access to HIV treatment, especially in the Southern states of the US (such as Mississippi, Arkansas and Louisiana).33
How much is spent on AIDS treatment and care in the United States of America?
The federal budget request for fiscal year (FY) 2011 includes a total of $20.4 billion for domestic HIV and AIDS, a 4% increase from the FY 2010 funding, which totaled $19.6 billion.34 Federal funding for AIDS programmes falls into five basic categories: care and treatment, financial and housing assistance, prevention, research, and global spending (most of which goes out through the US PEPFAR programme). Of these five budgets, care spending is by far the largest - just over half of the FY 2010 budget was for care and treatment programmes. The majority of AIDS care funding goes out through the federal Medicare and Medicaid programmes for people who do not have adequate private health insurance. The remainder is then principally spent on Ryan White programmes.35
What does the future hold for people living with HIV/AIDS in the United States of America?
In the short term, the continued funding of the Ryan White Program is good news for HIV positive people across the USA. The Affordable Care Act will also increase access to care and treatment for HIV positive people. However, most of these changes do not come into force until 2014 and there are still many inequalities and barriers to care in the US health system overall, particularly for the underinsured, and those without insurance at all.
"I'm alive today because I have access to the latest medical treatment, the latest technologies, the latest drugs - because I'm an upper middle-class person with health insurance and I can buy life. And that's not fair." - Eric Sawyer, living with HIV in America36
Many Americans are forced to forego healthcare, or accumulate enormous debts when they can’t afford to pay. Health reform under the Obama administration might be the first step towards greater access to healthcare, yet many public health programmes will continue to feel the stress of underfunding and increased demand as more people become reliant on their services. With the numbers of people living with HIV growing by around 49,000 every year,37 and antiretroviral treatment significantly extending lives, funding to address the needs of HIV positive people is going to have to increase substantially over the coming years.
- 1. US Census Bureau (August 2007) “Income, Poverty, and Health Insurance Coverage in the United States: 2006”
- 2. Department of Health and Human Services (2010, September) 'How Does the Affordable Health Care Act Impact People Living with HIV/AIDS?'
- 3. American College of Emergency Physicians (accessed October 2007) “The Uninsured: Access to Medical Care”
- 4. STARR SERED, S. and FERNANDOPULLE, R (2005) “Uninsured in America”, University of California Press, USA
- 5. The White House Office of National AIDS Policy (2010, July) 'The National HIV/AIDS Strategy for the United States' (pdf)
- 6. Human Rights Watch (2010, November) 'Southern Exposure: Human Rights and HIV in the Southern United States'
- 7. The White House Office of National AIDS Policy (2010, July) 'The National HIV/AIDS Strategy for the United States' (pdf)
- 8. Department of Health and Human Services (2010, September) 'How Does the Affordable Health Care Act Impact People Living with HIV/AIDS?'
- 9. Kaiser Family Foundation (2009, February) ‘Medicaid and HIV/AIDS Fact sheet’.
- 10. Kaiser Family Foundation (2009, February) ‘Medicaid and HIV/AIDS Fact sheet’.
- 11. Treatment Access Expansion Project (2010, April 26th) 'ETHA :: The Early Treatment of HIV Act (H.R. 1616, S.833)'
- 12. Human Rights Watch (2010, November) 'Southern Exposure: Human Rights and HIV in the Southern United States'
- 13. AIDSmeds.com (2010, March 31st) 'Health Reform and HIV: The Community Responds'
- 14. The Henry J. Kaiser Foundation (2010, April 27th) 'Health Reform Implementation Timeline'
- 15. Kaiser Family Foundation (2009, February) ‘Medicare and HIV/AIDS Fact sheet’.
- 16. Kaiser Family Foundation (2009, February) ‘Medicare and HIV/AIDS Fact sheet’.
- 17. Kaiser Family Foundation (2009, February) 'The Ryan White Program: Fact sheet'
- 18. U.S. Department of Health and Human Services 'HIV/AIDS Program: Ryan White Parts A-F'
- 19. The White House (19 December 2006) “Fact Sheet: The Ryan White HIV/AIDS Treatment Modernization Act of 2006”, whitehouse.gov
- 20. EPSTEIN, Edwards (07 December 2007) “Congress renews Ryan White AIDS care funding” San Francisco Chronicle
- 21. CARTER, Angela (04 September 2007) 'HIV/AIDS patients hurt by change in funding', New Haven Register
- 22. RUSSEL, S. (26 July 2007) “City calling for ideas on how to retool AIDS care system”, San Francisco Chronicle
- 23. The White House (2009) 'Honoring the legacy of Ryan White'
- 24. Executive Office of the President (2009, 19th October) 'Statement of administration policy: S. 1793 - Ryan White HIV/AIDS Treatment Extension Act of 2009
- 25. U.S Department of Health and Human Services (2010, April 5th) 'HHS Awards $1.84 Billion in Grants for HIV/AIDS Care and Medications'
- 26. The National Alliance of State and Territorial AIDS Directors (NASTAD) (2010, May) 'National ADAP Monitoring Report'
- 27. McColl, W & Schmid, C (2009) 'ADAP: Securing HIV/AIDS drugs for the nation's poor and uninsured'
- 28. The National Alliance of State and Territorial AIDS Directors (NASTAD) (2010, May) 'National ADAP Monitoring Report'
- 29. National Alliance of State and Territorial AIDS Directors “May 2004 ADAP watch” (pdf)
- 30. Kaiser Daily HIV/AIDS report (29 August 2003) "Three People With HIV/AIDS Die While on West Virginia ADAP Waiting List", The Henry J. Kaiser Family Foundation
- 31. The National Alliance of State and Territorial AIDS Directors (NASTAD) (2010, May) 'National ADAP Monitoring Report'
- 32. The National Alliance of State and Territorial AIDS Directors (NASTAD) (2011, July 15th) 'ADAP Watch Update'
- 33. Human Rights Watch (2010, November) 'Southern Exposure: Human Rights and HIV in the Southern United States'
- 34. The Henry J. Kaiser Family Foundation (2011, March) 'U.S. federal funding for HIV/AIDS: The FY 2012 budget request', accessed at fairfoundation.org.
- 35. The Henry J. Kaiser Family Foundation (February 2006) “U.S. Federal Funding for HIV/AIDS: The FY 2007 Budget Request “ HIV/AIDS Policy Fact Sheet
- 36. BBC (2009, 23rd April) 'Still no HIV cure, 25 years on'
- 37. UNAIDS (2012) 'Global Report: UNAIDS Report on the Global AIDS Epidemic 2012'