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HIV Treatment in the USA

Around 1.1 million Americans are living with HIV, and therefore need to take antiretroviral treatment to keep their HIV infection under control.

Accessing treatment is complicated in the United States of America (USA) where citizens are required to purchase medical insurance to cover the cost of their treatment; this is especially difficult for those on a low income. However, various schemes exist that can provide free HIV treatment in the USA to those with no insurance.

How is medical care funded in the United States of America?

Ryan White and his motherThe American healthcare system is principally financed by medical insurance schemes. These fall into three 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 48 million Americans are uninsured – this is 15.4 percent of the population. 1

Among those living with HIV, healthcare insurance is even more limited. Less than 20 percent of people living with HIV in the USA have private insurance and a third do not have any health coverage. 2

For a person living with HIV, delaying treatment is detrimental to both their own health, and to public health due to the risk of onwards HIV transmission to others. Presenting for HIV treatment late also increases medical costs as a person's health deteriorates without treatment.

National HIV/AIDS Strategy and Affordable Care Act

The USA National HIV/AIDS Strategy, released in July 2010, recognises that a substantial amount of people living with HIV - one third of those who test positive and are aware of their status - are not in care. 3 This highlights the necessity of being able to provide treatment to those who cannot afford it themselves. 4

The Strategy places a strong emphasis on the impact of the Affordable Care Act (ACA) - which came into effect Janurary 2014 - on the future provision of HIV treatment. Changes implicated in the Affordable Care Act include expanded Medicaid eligibility, protection for people with a pre-existing condition or chronic illness (such as HIV & AIDS) allowing them to access health insurance, and increased access to tax credits. 5 6

Accessing HIV treatment if you're uninsured or underinsured

People who are uninsured or underinsured, and are eligible for HIV treatment often find paying the costs for lifelong, daily medication extremely hard. However, there are a number of government-run healthcare schemes available that specifically cover the cost of treatment for people living with HIV in these circumstances, such as:

  • Medicare
  • Medicaid
  • The Ryan White Program
  • AIDS Drug Assistance Program

The two main government healthcare schemes are Medicare and Medicaid. The Ryan White Program is the main source of specific HIV funding in the USA, and it largely funds these schemes. The Ryan White Program also finances the AIDS Drug Assistance Program (ADAP), for those individuals who are unable to afford antiretroviral drugs (ARVs).

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 people living with HIV.

Medicaid

Medicaid is a medical assistance benefits programme that provides health insurance to 230,000 people living with HIV on a low income. 7 People covered by Medicaid can receive a range of treatment and care services, including access to essential antiretroviral treatment prescriptions.

Medicaid covers around half of all people living with HIV and receiving care. In 2012, Medicaid spending on HIV totalled $5.3 billion, which is a third of all federal HIV funding. 8

In 2014, Medicaid is being rolled out alongside the Affordable Care Act to reach more people living with HIV on low incomes. Previously, eligibility for Medicaid was means-tested and dependant on disability status. However, under the ACA the disability criteria has been dropped.

The income eligibility criterion has also increased to include those with incomes at or below 138 percent of the federal poverty level (FPL). 9 The number of beneficiaries is therefore rising.

Services such as free routine HIV screening to groups at higher risk of HIV infection, including men who have sex with men (MSM) and people who inject drugs (PWID), is at the discretion of each state, as is the roll out of Medicaid as a whole.

Medicare

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. Once disability is determined, a 24-month waiting period usually comes into effect before access to Medicare funding.

Medicare covers an estimated 6 percent of people living with HIV. 10 This equates to around 100,000 people - roughly one in five people receiving HIV care in the USA. 11

Part D of Medicare states that prescription drugs will be subsidised by the scheme. Antiretroviral drugs are very expensive, so the subsidies enable many people living with HIV on a small income to adhere to their treatment effectively. However, the majority of people covered by Medicare are also dually-covered by Medicaid, because the range of services that someone living with HIV may require are not covered by Medicare.

Medicare spending on HIV totalled US$6.6 billion in 2014 and US$7 billion was requested in the 2015 Budget Request. 12

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-related illnesses. The act was designed to improve the quality and availability of HIV care for all, particularly for the uninsured and underinsured. 13

The program provides care and support services to over half a million people living with HIV or AIDS each year, and goes further to provide support to families affected by the epidemic. The 2009 reauthorisation of the program additionally aimed to test and diagnose people who are living with HIV but do not know their status. 14

After Medicaid and Medicare, it is the third largest source of federal funding for HIV in the USA, with US$2.3 billion requested in the 2015 Budget Request. 15

30 percent of Ryan White beneficiaries are uninsured, leaving 70 percent who are underinsured. It is most likely that this 70 percent of people receive some funding from Medicaid or Medicare, but not enough to cover their entire health bills. 16

In October 2009, President Obama signed the Ryan White HIV/AIDS Treatment Extension Act, which was authorised until September 2013. 17 Although not legally reauthorised in 2013, the Ryan White CARE program continues to operate and receive funding. The authorisation process is being delayed so that the full effects of the Affordable Care Act can be realised. 18

The Ryan White Program funds a number of individual programmes:

  • Part A provides grants to eligible metropolitan areas that have the largest numbers of people living with HIV, and to transitional grant areas that have increasing numbers of cases.
  • Part B provides grants to all states to improve the quality, availability and organisation of HIV 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. 75 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, children and young people (who were sometimes left out in the early years when HIV primarily affected men who have sex with men). They also improve access to clinical trials and other forms of HIV research.
  • Part F is made up of a number of components including: promoting the education and training of healthcare professionals in HIV and AIDS; improving dental health amongst people living with HIV; addressing the disproportionate impact of HIV/AIDS on women and minority ethnic groups; and the Special Projects of National Significance (SPNS) which addresses emerging issues in the epidemic and develops an electronic database for all people living with HIV in the USA. 19

AIDS Drug Assistance Programs (ADAP)

ADAP is designed to supply HIV prescription drugs to those who have no other means of paying for them. ADAP provides antiretrovirals (ARVs) 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. 20

In 2013, there were 210,000 people receiving care from ADAP, with the month of June 2013 peaking at 152,000 people. It is estimated that around one in three people living with HIV the USA who are in care receive their medication through ADAP. 21 More people are currently enrolled in ADAPs than ever before, reflecting the continuation of the HIV epidemic in the USA, alongside the increase in availability and cost of ARVs.

Eligibility is based upon an HIV-positive status, a low income and being uninsured or underinsured. Some ADAPs have additional criteria such as a specific CD4 cell count or viral load, proof of residency, and include the income of a domestic partner in the income calculation, but these vary from state to state. 22

Waiting lists were implemented to cope with demand for ADAP services, until emergency funding from the Ryan White program began to be transferred to ADAP from 2010 onwards. However, in February 2014 Utah had to initiate a waiting list again. 23

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. 24

How much is spent on AIDS treatment and care in the United States of America?

The federal budget request for fiscal year (FY) 2015 includes a total of $30.4 billion for domestic HIV and AIDS spending, a 2.3 percent increase from the FY 2014 funding, which totalled $29.7 billion. 25

Federal funding for HIV programmes falls into five basic categories: care and treatment, cash 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 - 57 percent of the FY 2015 budget request was for care and treatment programmes.

The majority of HIV 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. 26

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

In the short term, the continued funding of the Ryan White Program is good news for people living with HIV across the USA. The Affordable Care Act will also increase access to care and treatment for people. However, there are still many inequalities and barriers to care in the US health system overall, particularly for the underinsured, and those without insurance.

"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 America 27

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, 28 and antiretroviral treatment significantly extending lives, funding to address the needs of people living with HIV is going to have to increase substantially over the coming years.

Where next?

References

Page last reviewed: 
23/07/2014
Next review date: 
23/01/2015

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