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Federal funding for HIV exceeds $32 billion; AIDS activists want more 

| STAT, Nov 20, 2018 – In a long-awaited move, a federal advisory panel is recommending that doctors be encouraged to offer an HIV prevention pill, a step that would quickly expand insurance coverage for a medicine that has been difficult for some people to access due to its cost.

In explaining its decision, the U.S. Preventive Services Task Force determined there is “high certainty” that using the pill would provide a “substantial” benefit for people at a high risk of becoming infected with HIV, the virus that leads to AIDS.

The independent panel of experts noted that it found “adequate epidemiologic data” on risk factors that can be used to identify people who are at a high risk of acquiring HIV.

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Should physicians adopt the recommendation, the medicine may finally fill its potential. Known as PrEP but sold commercially as Truvada by Gilead Sciences (GILD), the pill was approved to treat HIV in 2004, and then endorsed for prevention in 2012. Yet the panel noted that an estimated 1.1 million people in the U.S. are currently living with HIV.

The panel also noted that the CDC had estimated 1.2 million people were eligible for the pill three years ago, although only 78,300 actually used the medicine in 2016, when roughly 40,000 were diagnosed with HIV.

Since 2012, usage climbed from 3.3 people per 100,000 to 36.7 percent in 2017, a 56 percent rise, according to a study published earlier this year in the Annals of Epidemiology.

Nonetheless, patient advocates say cost has been an issue.

When the pill was first approved in 2004 for treating HIV, the wholesale cost for a month’s supply was $650, according to Truven Health Analytics, a unit of IBM. By the time it was also approved for prevention in 2012, the price had jumped to $1,159. Gilead has raised the price each year and this past January, the price was raised to $1,675, a 45 percent increase in six years.

For this reason, the new recommendation has been widely sought by patient advocates. Read more.

Federal funding for HIV exceeds $32 billion

U.S. Federal Funding for HIV/AIDS: Trends Over Time

Published: Nov 09, 2017

KAISER FAMILY FOUNDATION – Federal funding for HIV has increased significantly over the course of the epidemic, rising from just a few hundred thousand in FY 1982 to more than $32 billion in FY 2017.

This growth has been driven primarily by increased spending on mandatory domestic care and treatment programs, as more people are living with HIV in the United States, as well as by greater investments to combat HIV in low and middle-income countries.

Still, federal funding for HIV represents just a small fraction (<1%) of the overall federal budget of the United States.

In May of this year, President Trump released his first federal budget request, for FY 2018, which includes an estimated $32.0 billion for combined domestic and global HIV efforts.

If enacted by Congress, it would mark a decrease in funding for HIV of $839.7 million, or 2.6%,1 compared to current levels ($32.9 billion).

Most of this decline would be in the global portfolio (a $1.2 billion or 18% decline), although domestic discretionary programs would decline by $794 million or 10%; mandatory funding would continue to increase.

The 2018 fiscal year began on October 1st. However, since Congress has not yet finalized the appropriations bills, the current fiscal year is operating under a continuing resolution that essentially maintains funding at the FY 2017 levels until December 8th.

This fact sheet provides an overview of trends in federal funding for HIV and compares the budget request to current funding levels. (Story continues below … ) 

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Budget Categories

The federal HIV budget is generally organized into five broad categories: care & treatment; cash & housing assistance; prevention; research; and global/international. The first four categories are for domestic programs only.

Nearly two-thirds (65%) of the FY 2018 request is for care and treatment programs in the U.S.; 9% is for domestic cash/housing assistance; 2% is for domestic HIV prevention; 7% is for domestic HIV research; and 17% is for the global epidemic, including funding for international research.

Mandatory/Discretionary

Federal funding is either mandatory or discretionary. Discretionary funding levels are determined by Congress each year through the appropriations process.

Mandatory spending, primarily for entitlement programs (such as Medicaid and Medicare), is determined by eligibility rules and cost of services for those who are eligible, and is not dependent on annual Congressional appropriations (e.g., if more people are eligible and/or the cost of services goes up, mandatory spending will also increase).

Mandatory spending for HIV accounts for $19.7 billion, or 62%, of the total budget request and includes estimated spending levels for: Medicaid, Medicare, Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), and the Federal Employees Health Benefits Plan (FEHB), programs which provide health coverage and cash assistance.

Largely due to the growth in Medicare and Medicaid spending, mandatory spending has accounted for an increasing share of federal funding for HIV, rising from 50% of total HIV funding in 2012 to 62% in the FY18 request).

The remaining $12.3 billion (38%) of the federal HIV budget request for FY 2018 is discretionary, and is determined annually by Congress during the appropriations process. If enacted by Congress, discretionary HIV funding in the FY18 budget request would decrease by $2.0 billion (-14%) compared to the FY17 omnibus level ($14.3 billion) and would mark only the second time when overall discretionary funding declined from the preceding year.

Of this year’s discretionary request, $6.9 billion (22% of the overall HIV budget request and 56% of the discretionary component of the request) is for domestic programs – prevention research, housing, and non-mandatory care programs (e.g., the Ryan White HIV/AIDS Program).

The remainder of the discretionary budget, $5.4 billion (17% of the overall request and 44% of the discretionary component), is for the global epidemic.

The Domestic HIV Budget

The domestic HIV budget includes funding for care, cash/housing assistance, prevention, research, and the Minority HIV/AIDS Initiative (MAI) as follows:

Care

The largest component of the federal HIV budget is health care services and treatment for people living with HIV in the U.S., which totals $20.7 billion in the FY 2018 request (65% of the total and 78% of the domestic share). This represents a 5.2% increase over the FY 2017 omnibus level, and is largely due to increased mandatory spending for Medicaid and Medicare.2 Medicare is the largest federal funder of HIV care and treatment, followed by Medicaid.

The Ryan White HIV/AIDS Program, the largest HIV-specific discretionary grant program in the U.S. and third largest source of federal funding for HIV care (behind Medicaid and Medicare), is funded at $2.3 billion in the budget request (a $58.8 million or 2.5% decrease over the FY 2017 omnibus level). Ryan White’s AIDS Drug Assistance Program (ADAP), which provides access to HIV-related medications to people with HIV, was essentially flat funded at $898.6 million in the request.

The President’s budget proposes defunding the Ryan White Program’s Special Projects of National Significance (SPNS) Program and the Part F AIDS Education and Training Centers (AETC) program.

Cash/Housing Assistance

$3.0 billion of the FY 2018 budget request for HIV is for cash and housing assistance in the U.S. (9% of the overall budget and 11% of the domestic budget), a decrease of $7 million (0.2%) over the FY 2017 omnibus level. This includes mandatory spending estimates for SSI and SSDI, which provide cash assistance to disabled individuals with HIV. Housing assistance, through the Housing Opportunities for Persons with AIDS Program (HOPWA), is discretionary and receives $330 million in the request, a $26 million (7.3%) decrease over the FY 2017 omnibus level.

Prevention

The smallest category of the federal HIV budget is domestic HIV prevention totaling $721.1 million in the budget request (about 2% of the overall budget).

The FY 2018 prevention request includes funding for domestic HIV prevention across multiple agencies, representing a $199.2 million (22%) decrease over the FY 2017 omnibus level. Most prevention funding is provided to the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP), which receives $640.1 million in the FY 2018 request, which is $148.6 million (19%) lower than the FY 2017 omnibus level.

Research

$2.2 billion (7% of the overall request and 8% of the domestic budget) in the FY 2018 request is for domestic HIV research across multiple agencies, $491.8 million (18%) below the FY 2017 omnibus level.

The National Institutes of Health (NIH), which carries out almost all HIV research, receives $2.1 billion in the FY 2018 request for domestic HIV research activities (additional amounts used for international HIV research are attributed to the global category), a decline of 19% compared to the 2017 omnibus.4

Minority HIV/AIDS Initiative

For the first time since it was founded in 1989, the budget request defunds the federal Minority HIV/AIDS Initiative (MAI), which addresses the disproportionate impact of HIV/AIDS on racial and ethnic minorities in the U.S.  In the past the MAI was funded at about $50 million through the Office of the Secretary MAI Fund, as well as additional funding to be designated at other agencies within HHS. Read more.