National ADAP Monitoring Project Findings from the National Survey - - PowerPoint PPT Presentation

National ADAP Monitoring Project Findings from the National Survey

• f AIDS Drug Assistance Programs

April 20, 2005

Jennifer Kates Henry J. Kaiser Family Foundation

and

Murray Penner National Alliance of State and Territorial AIDS Directors

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National ADAP Monitoring Project

Current Survey

• The 9h annual report released by the Project
• 52 of 57 ADAPs receiving federal ADAP earmark in FY

2004 responded

• Data from June 2004 and FY 2004 except where noted

– Formularies as of September 2004 – Waiting List and Cost Containment status as of March 2005

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National ADAP Monitoring Project

ADAPs in Context

• Critical safety net for prescription drugs

– reaching about 30% of those with HIV/AIDS in care – still, 42%-59% of people with HIV not yet in care system

• Growing importance of ADAPs over time

– shifting treatment environment – increasing number of people – increasing costs

• ADAP budget has risen but demand still outpaces funding in some

states (not entitlement)

• Significant variation in program access/services across the country
• As payer of last resort, other system changes act as “levers” that

can increase or decrease demand for ADAPs (e.g., Medicaid, Medicare)

Sources: Fleming, P., et.al., HIV Prevalence in the United States, 2000, 9th Conference on Retroviruses and Opportunistic Infections, Abstract #11, Oral Abstract Session 5, February 2002; HRSA, HIV/AIDS Bureau, Ryan White CARE Act AIDS Drug Data Report, 2002

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National ADAP Monitoring Project

ADAP Clients, June 2004

• ADAPs provided medications to 94,577 clients

– 10 ADAPs accounted for 72% of clients served – Clients ranged from 13 in 1 state to more than 18,000 in another

• Trends:

– 10% increase in clients served over last year – 38 ADAPs had increases in clients, 13 had decreases – Among the 41 ADAPs reporting data since 1996, clients served increased by 217%; slower rates over time

• Client eligibility

– HIV positive; income eligibility ranges from 125% FPL in 1 state to 500% or more in 5 states – 3 ADAPs use additional clinical criteria

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National ADAP Monitoring Project

Client Demographics, June 2004

• Mostly people of color

– African Americans 34%, Hispanics 26%, others are <2%, whites 36%

• Mostly male (79% were male, 21% female)
• Primarily younger adults (57% between 25 and 44)
• Very low-income (80% of clients fell at or below 200% FPL;

51% at or below 100% FPL)

• Most without insurance coverage (15% private insurance;

9% Medicare; 7% Medicaid; <1% duals*)

• Indications of advanced HIV disease (50% of clients had

CD4 count of 350 or below at enrollment)

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National ADAP Monitoring Project

ADAP Drug Expenditures, June 2004

• ADAP drug expenditures totaled $96.9 million

– Annualized at $1.163 billion, or 98% of total budget – 10 ADAPs accounted for 77% of drug spending – Ranged from $14,410 in one state to $21.2 million in another

• Trends

– 25% increase in drug spending over last year, largest increase in recent years – 43ADAPs had increases, 8 had decreases – Among the 41 ADAPs reporting data since 1996, drug expenditures increased by 591%; slower rates over time, with exception of most recent period

• ARVs account for most spending and scripts; most

expensive per prescription

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National ADAP Monitoring Project

ARVs Most Expensive: Expenditures per Prescription, June 2004

$431 $311 $318 $90 $257 $348 $92 $1,215 $96

$0 $200 $400 $600 $800 $1,000 $1,200 $1,400 Total Drugs All Arvs NRTIs NNRTIs PIs FI All Non- Arvs "A1" OI All Other

Note: American Samoa, Guam, Maine, the Marshall Islands, N. Mariana Islands, and U.S. Virgin Islands are not included..

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National ADAP Monitoring Project

ADAP Formularies, as of September 2004

• Range from 25 drugs in 1 state to nearly 500 in another; open

formularies in 3 states

• ARV coverage generally high

– 35 ADAPs cover all FDA-approved ARVs; 17 ADAPs do not – 1 ADAP does not provide any protease inhibitors – 42 cover Fuzeon, 10 do not

• Coverage of medications for OIs and other conditions highly variable

– 37 ADAPs cover 10 or more of the 16 drugs highly recommended (“A1”) by USPHS/IDSA for the prevention of opportunistic infections (OIs), including 4 that cover all 16 – 15 cover fewer than 10 of “A1” medications – 1 ADAP does not cover any medications other than ARVs – 20 ADAPs cover hepatitis C treatments – 24 ADAPs cover hepatitis A and B vaccines

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National ADAP Monitoring Project

Formulary covers all approved ARVs in all four drug classes, NRTIs, NNRTIs, PIs, and Fusion Inhibitor (35 states) Formulary covers all approved NRTIs, NNRTIs, PIs, but not approved Fusion Inhibitor (6 states) Formulary covers approved Fusion Inhibitor but not all approved NRTIs, NNRTIs, and PIs (7 states) Formulary does not cover approved Fusion Inhibitor or all approved drugs in other classes (4 states)

Note: Data not reported by 5 ADAPs: American Samoa, Guam, the N.Mariana Islands, Marshall Islands, and U.S. Virgin Islands

AL AR GA ID IL IN KY MO MT NV NH OH SC SD TX VA WY OK ME MD NJ NY OR AK CO LA UT CA KS MS FL HI NM AZ ND MN IA WI MI NE WA PA NC TN WV VT MA RI DE CT DC Commonwealth of Puerto Rico

ARV Coverage, as of 9/04

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National ADAP Monitoring Project

Formulary covers all 16 “AI” drugs recommended for the prevention of OIs (4 states) Formulary covers 10-15 “AI” drugs recommended for the prevention of OIs (33 states) Formulary covers <10 “AI” drugs recommended for the prevention of OIs (14 states) Formulary does not cover any drugs recommended for the prevention of OIs (1 state)

Note: Data not reported by 5 ADAPs: American Samoa, Guam, the N.Mariana Islands, Marshall Islands, and U.S. Virgin Islands

AR GA ID IL IN KY MO MT NV NH OH SC SD TX VA WY OK

ME

MD NJ NY OR AK CO LA UT CA KS MS

FL

HI NM AZ ND MN IA WI MI NE WA PA NC

TN

WV VT MA RI DE CT DC Commonwealth of Puerto Rico AL

“A1” OI Prophylaxis Coverage, as of 9/04

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National ADAP Monitoring Project

National ADAP Budget by Source, FY 2004

Title II ADAP Earmark $728,030,284 (61%) Title II Base $21,676,389 (2%) Other State/ Federal $22,485,845 (2%) Title II ADAP Suppl. $20,841,716 (2%) State $226,629,046 (19%) Title I $21,038,569 (2%) Estimated Rebates $146,245,694 (12%)

Total = $1.19 Billion

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National ADAP Monitoring Project

National ADAP Budget Composition Over Time

26% 40% 53% 65% 68% 66% 64% 65% 61% 25% 28% 22% 18% 17% 17% 17% 16% 19% 6% 5% 6% 7% 7% 7% 9% 10% 12% 25% 16% 13% 7% 5% 3% 3% 2% 2% 13% 6% 5% 3% 2% 3% 2% 2% 2%

5% 3% 4% 5% 5% 4% 1% 1% 2%

FY 1996 $200.4 m FY 1997 $412.8 m FY 1998 $543.7 m FY 1999 $711.9 m FY 2000 $779 m FY 2001 $870.2 m FY 2002 $961.7 m FY 2003 $1,070.5 m FY 2004 $1,186.9 m

Other Title I Title II Base Drug Rebates State Title II ADAP Earmark

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National ADAP Monitoring Project

Other than Earmark, Sources of Funding Highly Variable and Not Available to all ADAPs

Number of ADAPs Receiving Funding by Source, FY 2004

57 18 20 40 36 9

A D A P Ea rm a rk A D A P S upple m e nta l Title II B a s e Title 1 S ta te D rug R e ba te s

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National ADAP Monitoring Project

Several ADAPs Faced Budget Cuts Overall or For Particular Funding Sources

Number of ADAPs with Decreases in Overall Budget and by Funding Source, FY 2003-2004 15 14 15 4 14 6

Decrease in Overall Budget Decrease in Title II Base Funding Decrease in ADAP Supplemental Decrease in Title I Funding Decrease in State Funding Decrease in Drug Rebates

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National ADAP Monitoring Project

Waiting List Trends

• Surveys bi-monthly since July 2002
• Number of people on waiting lists ranged from a low of

537 (in 7 states) to a high of 1,629 (in 11 states)

• Average of 837 individuals on waiting lists
• 18 ADAPs have had a waiting list at some point during the

survey period; 7 ADAPs had waiting lists in 10 or more periods

• Highest number of individuals on any waiting list was 891

(North Carolina); lowest was 1 (Alaska, Idaho, and Montana)

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National ADAP Monitoring Project

President’s $20 Million ADAP Initiative

• $20 million, one-time initiative providing drug therapies to

individuals on waiting lists in 10 states (as of June 21, 2004)

– 1,738 treatment slots – only those on waiting lists in these states on June 21, 2004 eligible

• Currently serving more than 1,250 individuals through a mail-
• rder distribution system – administered outside of ADAP

– Eligible individuals in 2 states not yet processed to receive medications

• Initiative due to expire September 29, 2005
• ADAPs are expected to begin transitioning individuals from the

program as it expires – no continuation funding has been provided to date

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National ADAP Monitoring Project

Resource Constraints Lead to Cost Containment Measures that May Limit Client Access

• 21 ADAPs have 1 or more cost containment measures in place
• 11 ADAPs have waiting lists (not only reflection of unmet

need)

• Other cost containment strategies

– Capped enrollment – Reduced formularies – Limiting access to certain medications – Cost-sharing – Expenditure limits (monthly or annual) – More restrictive eligibility requirements (medical, financial)

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National ADAP Monitoring Project

Waiting Lists, as of March 2005 (627 Individuals)

States with waiting lists in place as of March 2005 (107 individuals - 7 states). States with individuals eligible for the President’s $20 million ADAP Initiative who are not yet receiving medications (401 individuals – 2 states), as of March 2005 States with waiting lists in place as of March 2005 that also have individuals eligible for the President’s Initiative not yet receiving medications (104 individuals not eligible for the initiative and 15 individuals eligible but not yet receiving medications - 2 states) AL (133) AR (43) GA ID (5) IL IN KY (72) MO MT (5) NV NH OH SC SD (43) TX VA WY (6) OK ME MD NJ NY OR AK (1) CO LA UT CA KS MS FL HI NM AZ ND MN IA (47) WI MI NE (46) WA PA NC (268) TN WV (1) VT MA RI DE CT DC Commonwealth of Puerto Rico

Note: Data not reported by 5 ADAPs: American Samoa, Guam, the N.Mariana Islands, Marshall Islands, and U.S. Virgin Islands.

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National ADAP Monitoring Project

State/territories without current cost-containment strategies in place but anticipating the need to institute cost-containment strategies in FY 2005 (8 states), as of March 2005. AL AR GA ID IL IN KY MO MT NV NH OH SC SD TX VA WY OK ME MD NJ NY OR AK CO LA UT CA KS MS FL HI NM AZ ND MN IA WI MI NE WA PA NC TN WV VT MA RI DE CT DC States/territories with cost-containment measures in place (7 states), as of March 2005. Commonwealth of Puerto Rico States/territories with current cost-containment measures in place and anticipate the need to implement additional measures in FY 2005 (5 states), as of March 2005.

Note: Data not reported by 5 ADAPs: American Samoa, Guam, the N. Mariana Islands, Marshall Islands, and U.S. Virgin Islands.

Other Current/Planned Cost Containment Measures, as of March 2005

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National ADAP Monitoring Project

Drug Purchasing & Insurance Strategies

• 51 of 52 states reporting data participate in 340B program
• 27 are “direct purchase”; 25 use pharmacy networks
• ADAP Crisis Task Force negotiations to address drug

prices for all ADAPs– estimated savings of $90 million in 2004

• 26 ADAPs use earmark funding to purchase/maintain

insurance coverage (cost-effective)

– 7,277 clients served in June 2004 – $37.8 million in estimated expenditures for FY 2004

• 20 ADAPs use earmark funding to pay for insurance cost-

sharing and deductibles

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National ADAP Monitoring Project

• Continued importance/role of ADAPs as safety net
• Reauthorization of Ryan White CARE Act (September 30,

2005)

– Focus on ADAPs – How to address variability in access to ADAPs – Other CARE Act changes could affect ADAPs

• Challenges:

– Growing population in need of care – Funding constraints in some states – Transitioning clients from the President’s $20 million ADAP Initiative (September 2005) – Implementation of the Medicare Part D Prescription Drug Benefit

• f MMA (January 2006)

– Federal and state proposals to limit Medicaid spending

Looking Forward…