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Treatment and Care for AIDS in America

In the initial years of the AIDS epidemic in 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 triple combination therapy to keep their HIV infections under control. Though life for many HIV positive people in America 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 USA?

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 programs (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 children¹.

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 receive².

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.³

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 that they perhaps would have otherwise.

How do people on low-incomes access AIDS care?

Care for people with AIDS needs to be given on several levels. The most obvious necessity today is antiretroviral treatment, which helps to prevent people 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 lucky 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 America. The Ryan White Program also finances the AIDS Drug Assistance Program (ADAP), for those individuals who are unable to afford antiretrovirals.

Medicaid is a medical assistance benefits program for those on a low income. It provides coverage for medical, dental, optical, mental, hospital, and long-term care costs and also covers prescription medication (such as HIV drugs) under certain circumstances. Eligibility varies from state to state, but all programmes require a person to be on a low, or very low income in addition to one other criterion, which may include:

• Pregnancy and / or having a dependent child under the age of 19
• Having a disability or a family member with a disability (e.g. a diagnosis of AIDS)
  
• Being over the age of 65

Medicaid is supposed to be accessible only to people who have exhausted all alternative financial resources. Financial assets (items or property that could be exchanged for cash), family income and social security benefits will all usually be taken into consideration when assessing eligibility. Medicaid is allocated within individual states, and is funded by both the federal and state government.⁴

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 abolish the AIDS diagnosis restriction is currently under consideration by the government.⁵

Medicare is a low-cost medical insurance program that provides health insurance to people who are 65 years old or more, people with certain disabilities (including those disabled by HIV or AIDS) and those with end-stage renal disease (kidney failure).

• Medicare Part A plans pay for necessary medical care given at specific, certified hospitals, clinics or hospices.
• Medicare Part B helps to pay for doctors, outpatient hospital care, ambulance costs, and other tests and services, but doesn’t pay for prescription medicines. Part B will cover general care for people with HIV, but not antiretroviral drugs.
• Medicare Part C consists of plans provided through Medicare-approved private insurance companies that combine Part A and Part B, and in some cases, Part D. Part C programmes are usually called “Medicare Advantage Plans”.
• Medicare Part D (a more recent addition) covers most prescription medications (including antiretroviral drugs)

Medicare is low-cost but rarely free. Subscribers will usually have to pay a monthly premium for Part B, Part C and Part D plans. Premiums may also be payable for Part A, unless the subscriber or their spouse paid Medicare taxes while they were working. Subscribers to all plans may also have to pay deductibles (a set fee for care, payable yearly), coinsurance (a percentage of care costs) and/or copayments (set amounts for certain care services). If a person is treated by a doctor or institution that doesn't accept Medicare, they will usually have to pay the full cost of the service.

People on very low incomes can often get government help with payments for Medicare premiums, deductibles, coinsurance and copayments. Subscribers that do not qualify for financial help also have the option to take out a ‘Medigap’ policy (payable monthly) to cover these expensive ‘gaps’ in cover.

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 the uninsured and underinsured. Unlike Medicaid and Medicare, it is not a personal insurance scheme, but an instrument for funding such schemes, and other AIDS services. Financial allocations for the Program 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 (Title I) 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 (Title II) 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 Title II is also earmarked to fund state AIDS Drug Assistance Programs (ADAPs – see below).
• Part C (Title III) supplies direct grants to individual organisations and outpatient care clinics for early intervention services and capacity development. Seventy-five percent of Title III grants must be spent on strengthening core medical services.
• Part D (Title IV) 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.

There are a number of other programmes and projects funded outside of the four main Titles. These include programmes to improve dental health amongst HIV positive people, a programme that supports research into innovative models of HIV care and a programme to promote the education and training of healthcare professionals in HIV and AIDS.⁶

The AIDS Drug Assistance Program (ADAP) is funded through Part B (Title II) of the Ryan White Program. Rather than one ADAP, there are actually 54: one for each state or US territory.

ADAP is designed to supply antiretroviral drugs to those who have no other means of obtaining them. 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.

People are now starting to die while they're on the waiting list. It is a crisis that will continue.

Dr. Faisal Khan

In April 2007, ADAPs were supporting approximately 142,000 people with HIV in the USA, either by directly paying for drugs, or by financing their private health insurance plans⁷. ADAP clients represent around 25% of those thought to be living with HIV/AIDS and receiving care in the U.S. each year.⁸

Though ADAPs have helped many thousands of people with HIV, for many years they remained critically underfunded, and a number of states developed lengthy waiting lists of clients in need of drugs. By June 2004, at the peak of the crisis, there were 1,629 people waiting for AIDS drugs in 11 states⁹. Commenting on the situation in his own state, Dr. Faisal Khan, director of West Virginia's HIV/AIDS/STD program said:

“People are now starting to die while they're on the waiting list. It is a crisis that will continue.”¹⁰

Since 2004, the numbers have reduced as greater funding has been allocated to ADAPs, though the waiting lists were not fully cleared until September 2007. The clearance of the lists has been attributed to supplemental federal financial awards for ADAPs given to fourteen states with the most serious treatment shortages. Greater advocacy from community-based HIV & AIDS organisations, resulting in increases in funding by state governments, has also helped, as has the automatic transferral of eligible ADAP clients onto the Medicare Part D program.¹¹

Unfortunately, because the total number of Americans living with HIV and AIDS is still growing, there is a possibility that treatment waiting lists may return if the extra funds allocated to ADAPs in 2007 are not sustained. Furthermore, many transferred onto the Medicare Part D program have complained that their prescriptions are often delayed, and that it is less efficient and more expensive for the individual than ADAP.¹²

How much is spent on AIDS treatment and care in the USA?

The federal budget for fiscal year (FY) 2007, included a total of $22.8 billion for HIV and AIDS. Federal funding for AIDS programs falls into five basic categories: care, 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, with $13.2 billion spent in FY2007 - a 7% increase on 2006, and 58% of the total budget request. The majority of AIDS care funding goes out through the federal Medicare and Medicaid programs for people who do not have adequate private health insurance. The remainder (around $2.1 billion) is then principally spent on Ryan White programmes.¹³

The Ryan White Program proved controversial when it was reauthorized in 2006¹⁴. 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 taken hold and affects rural as well as urban populations, it was less popular with cities such as New York and San Francisco¹⁵. These areas would have experienced severe funding cuts, particularly in the fourth and fifth years of the proposed five-year reauthorization. Eventually the Program 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^{16 17}. How the funding problems will be resolved at the end of the three-year reauthorization period has yet to be decided.

What does the future hold for people living with HIV and AIDS in America?

In the short term, the continued funding of the Ryan White Program, and the end of ADAP waiting lists is good news for HIV positive people across the USA. However, with the numbers of people living with HIV growing by around 40,000 every year 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.

There is also an urgent need to rectify the many inequalities and barriers to care in the US health system overall, particularly for the underinsured, and those without insurance at all. In the richest country in the world, many say it is unacceptable that so many people are required to pay out of pocket or turn to charitable AIDS organizations to secure their basic human right to good health. It is also unacceptable that so many are forced to forego healthcare, or accumulate enormous debts when they can’t afford to pay. Most agree that universal access to treatment and care will only ever be achievable if the entire US healthcare system is radically overhauled. Until then, people will continue to fall between the gaps, and be denied the good health that they deserve.

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