The AIDS Drug Assistance Program A Policy Forum and

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							                                                        The AIDS Drug Assistance
                                                        Program: Findings from the
                                                        National ADAP Monitoring
                                                        Project Annual Survey
                                                        Presented at a Policy Forum to Release the Annual Report of
                                                        the National ADAP Monitoring Project
                                                        April 10, 2007 ■ Washington, DC

                                                        Presented by:
                                                        Jennifer Kates, Kaiser Family Foundation
                                                        Murray Penner, NASTAD

                                                        Additional co-authors:
                                                        Alicia L. Carbaugh, Kaiser
                                                        Beth Crutsinger-Perry, NASTAD
                                                        Celeste Davis, NASTAD
                                                        Britten Ginsburg, NASTAD
                                                        Angela Seegars, NASTAD




                                                                                      Chart 1


                                  The National ADAP Monitoring
                                       Project and Survey

             • Partnership between Kaiser and NASTAD since 1996
             • All ADAPS receiving federal earmark surveyed
                      – 54 in FY 2006*; 51 responded
                      – Non-responders represent <1% of estimated living AIDS cases
             • Data from:
                      – June 2006 for most indicators; offers monthly “snapshot”
                        comparisons to earlier periods
                      – FY 2006 for budget indicators and some policy variables
                      – More recent data from supplemental data collection for
                        formularies, Medicare Part D policies, waiting lists, other cost-
                        containment measures
             • Full report on www.kff.org and www.NASTAD.org
             • State-level data on www.statehealthfacts.org/hiv



*In FY 2007, 58 state and territorial jurisdictions will receive federal ADAP earmark funding.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                      1
                                                                               Chart 2




                                 Highlights and Major Themes

            • ADAPs are the nation’s prescription drug safety-net for
              people with HIV/AIDS who have limited or no access to
              needed medications
            • A variable safety-net: what one gets depends on where one
              lives
            • States have come to the fore as major source of ADAP
              funding, key driver of budget increases
            • But states find themselves in a delicate balance
                    – Between program capacity and client demand
                    – Limited set of “levers” available
            • Waiting lists: fewer in number than in recent years but they
              continue; potential signs of increase?
            • Part D: significant impact, relieving pressure on ADAPs, but
              some uncertainty remains
            • Ryan White reauthorization: opportunities & challenges


Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                         June 2006 “Snapshot” Findings




                                                                                         2
                                                                               Chart 3




                                        ADAP Clients, June 2006
                                                                                            •   Nearly 142,000 enrollees;
                                                                                                about one quarter of
                                                                                                people with HIV/AIDS in
                                                                                                care
                                                                                            •   68% of those enrolled
                                                                                                received Rx in June 2006;
                                                                                                thousands of others
       141,856                                                                                  received insurance
                                                                                                coverage
                                           96,121                                           •   Ten states accounted for
                                                                                                most clients served (68%) –
                                                                             13,744
                                                                                                range from 25 to more than
                                                                                                17,000
                                                                                            •   Client utilization stable
 Clients Enrolled                    Clients Served                    Clients Served           between June 2005 and
                                     (Medications)                      (Insurance)             June 2006; 21 states had
                                                                                                increases, 27 had
                                                                                                decreases (Part D)


Notes: 51 ADAPs reported data. Some clients receiving insurance coverage through ADAP may
also be receiving medications.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                               Chart 4




                        Profile of ADAP Clients, June 2006

                                                                    >300% FPL 5%            •   Almost two-thirds were
                         White
                                                                  201-300% FPL 10%              people of color (61%)
                         36%                                                                •   Most low-income (82% at or
                                                                    101-200% FPL
                                                                        27%
                                                                                                below 200% FPL)
                                                                                            •   Most uninsured (71%)
                        African                                                             •   Most were men (78%) and
                       American                                                                 between the ages of 25-44
                         33%
                                                                                                (54%)
                                                                      <100% FPL
                                                                         55%
                                                                                            •   More than half with
                       Hispanic                                                                 indications of advanced
                         26%                                                                    HIV disease (CD4 count
  Unknown/                                          Unknown                                     <350)
    Other                  5%                         2%

                 Race/Ethnicity                                         Income




Note: 51 ADAPs reported data.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                              3
                                                                               Chart 5


        ADAP Drug Expenditures & Per Capita Drug
                 Spending, June 2006

                                                                                          •     Drug spending totaled $95.3
           Monthly Drug                                                                         million in June 2006
           Expenditures                        $95.3                                      •     ADAPs also spent $5.4
                                               million                                          million on insurance
                                                                                                coverage in June 2006; $83.5
                                                                                                million in FY 2006
                                                                                          •     10 states accounted for most
                                                                                                drug spending (77%); range
                                                                                                from $22K to nearly $20
                                                                      All
                                                                     Other
                                                                                                million
            Per Capita                     ARVs
                                                                      8%                  •     Drug spending 7% less in
              Drug                         89%                         "A1" OI                  June 2006 compared to June
            Spending                                                     3%                     2005 (Part D)
              $991




Note: 51 ADAPs reported data.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                               Chart 6


            ADAP Drug Expenditures & Prescriptions
               Filled, by Drug Class, June 2006

                                                                                                                       "A1" OI
                                                                                                                         9%
                              Protease                           "A1" OI
                                                                                              Protease
                              Inhibitors                           3%
                                                                                              Inhibitors
                                30%
             NNRTI                                                                               20%
                                                                                                              All Other
              11%                                All Other
                                                                                         NNRTI                  28%
                                                     8%
                                                                                          10%
                                                                                                                             Fusion
                                 NRTI                                                                  NRTI                Inhibitors
                                 47%                         Fusion                                    33%                    <1%
                                                           Inhibitors
                                                              1%


                    Total = $95.3 million                                                         Total = 344,904
                      Drug spending                                                             Prescriptions Filled




Note: 51 ADAPs reported data.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                                        4
                                                                                 Chart 7


                   ADAP Expenditures Per Prescription,
                       by Drug Class, June 2006
                                                                                                                                           $1,260




                                                                      $392             $399                                 $410
                      $276                                                                                 $306

                                       $76              $82


                      Total "A1 OIs"                   All          All ARVs           NRTIs               NNRTIs            PIs             FIs
                      Drugs                           Other




Note: 51 ADAPs reported data.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                 Chart 8


                                         ADAP Income Eligibility,
                                            as of June 2006
                                                                                                                             VT       NH
                              WA                                                                                                             ME
                                                   MT                  ND
                                                                                     MN                                                                MA
                            OR                                                                   WI                                NY                  RI
                                        ID                             SD                                    MI
                                                                                                                                                  CT
                                                        WY
                                                                                                                              PA                  NJ
                                                                        NE             IA
                                                                                                            IN     OH
                                                                                                      IL                                      DE
                                 NV                                                                                     WV
                                              UT                                                                                 VA
                                                         CO                 KS             MO                                                MD
                         CA                                                                                       KY
                                                                                                                                 NC                DC
                                                                                                             TN
                                                                              OK
                                             AZ                                             AR                              SC
                                                         NM
                                                                                                                       GA
                                                                                                      MS     AL
           AK
                                                                         TX                 LA
                                                                                                                              FL              Guam

                                                                                                                                              Puerto Rico
                                              HI
                                                                                                                                              Virgin Islands (U.S.)
             Income eligibility greater than 300% FPL (21 ADAPs)
             Income eligibility between 201% FPL and 300% FPL (19 ADAPs)
             Income eligibility at 200% FPL or below (11 ADAPs)
             Not reported (3 ADAPs)
Notes: 51 ADAPs reported data. The 2006 Federal Poverty Level (FPL) was $9,800
(slightly higher in Alaska and Hawaii) for a household of one.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                                                                      5
                                                                                      Chart 9


          ADAP Formulary Coverage of Antiretroviral
                Drugs, as of November 2006
                                                                                                                                              VT        NH
                                  WA                                                                                                                         ME
                                                           MT               ND
                                                                                            MN                                                                         MA
                                OR
                                                                                                           WI                                       NY
                                                                              SD                                          MI                                            RI
                                            ID
                                                                                                                                                                   CT
                                                               WY
                                                                                                                                              PA                   NJ
                                                                                                 IA
                                                                                NE                                              OH
                                     NV                                                                         IL    IN                                      DE
                                                     UT                                                                                  WV
                                                                                                                                               VA
                                                                    CO                                MO                                                     MD
                            CA                                                     KS                                          KY
                                                                                                                                                   NC             DC
                                                                                                                          TN
                                                                                       OK             AR                                  SC
                                                 AZ             NM
                                                                                                                MS        AL        GA
            AK
                                                                                                                                                              Guam
                                                                                 TX                    LA
                                                                                                                                                              Puerto Rico
                                                                                                                                               FL
                                                                                                                                                              Virgin Islands (U.S.)
                                                     HI

       Covers all ARVs in all four drug classes, NRTIs, NNRTIs, PIs, and Fusion Inhibitor (35 ADAPs)

       Covers all NRTIs, NNRTIs, PIs, but not Fusion Inhibitor (1 ADAP)

       Covers Fusion Inhibitor but not all NRTIs, NNRTIs, and PIs (13 ADAPs)

       Does not cover Fusion Inhibitor or all drugs in other classes (5 ADAPs)

Notes: 44 ADAPs reported data. For the states that did not report, last year’s information was used.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                      Chart 10


             ADAP Formulary Coverage of “A1” Drugs
                  for OIs, as of November 2006
                                                                                                                                          VT        NH
                                WA                                                                                                                           ME
                                                                           ND
                                                          MT
                                                                                           MN                                                                          MA
                             OR
                                                                                                       WI                                          NY
                                           ID                               SD                                                                                      RI
                                                                                                                          MI                                      CT
                                                               WY                                                                             PA
                                                                                                                                                                  NJ
                                                                                             IA
                                                                             NE                                                OH
                                                                                                            IL       IN                                       DE
                                   NV
                                                 UT                                                                                  WV
                                                                                                                                              VA             MD
                                                                CO                                MO
                           CA                                                    KS                                        KY
                                                                                                                                                                   DC
                                                                                                                                              NC
                                                                                                                      TN
                                                                                      OK          AR                                     SC
                                                AZ              NM
                                                                                                                      AL            GA
                                                                                                                MS
             AK
                                                                              TX                      LA                                                           Guam

                                                                                                                                                                   Puerto Rico
                                                                                                                                              FL
                                                                                                                                                                   Virgin Islands (U.S.)
                                                 HI

              Covers all 29 “AI” OI drugs (4 ADAPs)

              Covers 15-28 “AI” OI drugs (33 ADAPs)

              Covers less than 15 “AI” OI drugs (16 ADAPs)

              Does not cover any “A1” OI drugs (1 ADAP)

Notes: 44 ADAPs reported data. For the states that did not report, last year’s information was used.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                                                                                           6
                                                                                Chart 11


                                         ADAPs With Waiting Lists,
                                            as of March 2007
                                                                                                                                VT    NH
                               WA                                                                                                          ME
                                                    MT                ND
                                                    (20)                                                                                              MA
                                                                                       MN
                           OR                                                                                                        NY
                                                                                                  WI
                                         ID                                                                 MI                                        RI
                                                                         SD                                                                      CT
                                                           WY
                                                                                                                                PA
                                                                                                                                                 NJ
                                                                                        IA                            OH
                                                                         NE
                                                                                                       IL   IN                                  DE
                                    NV                                                                                     WV
                                              UT                                                                                VA
                                                            CO                KS             MO                                            MD
                          CA                                                                                     KY
                                                                                                                                 NC
                                                                                                             TN                            DC
                                                                                OK                                           SC
                                              AZ           NM                                AR                             (463)
                                                                                                                       GA
           AK                                                                                          MS    AL
          (13)                                                                                                                                  Guam
                                                                           TX                LA
                                                                                                                                FL              Puerto Rico (75)

                                                                                                                                                Virgin Islands (U.S.)
                                               HI


                  Waiting list (4 states; 571 individuals)

                  No waiting list


Note: 52 ADAPs reported data.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                Chart 12


            ADAPs with Cost-Containment Measures,
               Instituted in FY 2006 (4/06-3/07)
                                                            (Other than waiting lists)




                                                                     3

                                         2                                                                                            2

                                                                                                       1


                                Reduced                      Eligibility                Cost-Sharing                         Capped
                               Formulary                    Restrictions                                                    Enrollment



Note: 52 ADAPs reported data.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                                                                        7
                                                                                    Chart 13


                          National ADAP Budget, by Source,
                                      FY 2006
                                 Drug Rebates
                       Other     $230,304,885
                   State/Federal    (17%)
                    $14,538,586
                       (1%)
              Title I
           $18,392,900
              (1%)
                         State                                                                                         Title II ADAP Earmark
                      $304,905,005                                                                                          $779,750,980
                         (22%)                                                                                                   (56%)
                              Title II Base
                              $28,615,120
                                  (2%)
         Title II ADAP Supplemental
                   $9,795,020
                      (1%)                                           Total = $1.39 billion


Note: 51 ADAPs reported data. Title II earmark and supplemental funding data available for all 54 jurisdictions.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                    Chart 14


                    Number of ADAPs, by Budget Source,
                                 FY 2006




                                  54
                                                                                        40                                        39

                                                    20                21
                                                                                                           12          14


                              Title II           Title II           Title II           State             Title I      Other      Drug
                              ADAP               ADAP               Base                                            State/Fed   Rebates
                             Earmark             Suppl.




Notes: 51 ADAPs reported data. Title II earmark and supplemental funding data available for all 54 jurisdictions.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                                               8
                                                                                    Chart 15


    Number of ADAPs with Funding Decreases, by
           Budget Source, FY 2005-2006




                                  20                                  20

                                                                                                                                13
                                                                                        10
                                                                                                            7         8
                                                     6


                              Overall            Title II          Title II           Title II           State      Title I    Drug
                              Budget             ADAP              ADAP               Base                                    Rebates
                                                Earmark            Suppl.




Notes: 51 ADAPs reported data. Title II earmark and supplemental funding data available for all 54 jurisdictions.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                     Major Trends & Key Issues




                                                                                                                                        9
                                                                              Chart 16


     Trends in ADAP Clients & Drug Expenditures,
                     1996-2006
                                                                 (Percent Change)

                          528%
                                                       Drug Spending                     Clients Served




                                                          242%
                                       203%

                                                                      115%               105%

                                                                                                39%       -7%   -1%

                           1996-2006                       1996-2000                     2000-2006        2005-2006


Note: Comparisons over time based on 49 ADAPs reporting in each comparison period.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                              Chart 17


     Trends in ADAP Clients & Drug Expenditures,
                   Continued….

            • Client utilization (number receiving medications)
                    – Increased significantly over time, but at a decreasing rate
            • Drug expenditures
                    – Have grown at approximately twice the rate as client utilization
                      over decade-long period
            • Part D Impact: For first time, client stabilization between
              monthly snapshots (June 2005 and June 2006) and decrease in
              drug spending
                    – One-time shift
                    – Timing of Part D (May 15, 2006) and ADAP monthly snapshot
                      survey (June 2006)
                    – Uncertainty about ongoing effect – clients? expenditures?
                    – Other indicators suggest continued growth in some areas:
                      growing client enrollment, increase in insurance
                      purchasing/continuation


Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                      10
                                                                                                                                                      Chart 18


         Number of People on Waiting Lists by Survey
               Period, July 2002-March 2007

                                                                                                                                             1,629
                                                                                                                                                               1,518

                                                                                                                                                                        1,307
        1,108                                                                                                          1,263
                                                                                                                                                                                                                                                                            Part D
                      1,110                                                                                                                                                                                                                                               Enrollment
                                                                                                                                                                                                                                                   925                     Deadline
                                                                                                     726                                                                                                                         866
                                                                                                                                  791                                            813                                                                         791
                                                             622                          628                                                                                                                                                                                                                 571
                                              626                       568                                                                                                                         684                                                                                       558
                                                                                                                                                           PAI                                                                            647
                                                                                                              630                                         Begins                 592
                      552 552                           537                     541                                                                                                                                     435
                                                                                                                                                                                                              453                                    331                                           340
                                                                                                                                          PAI
                                                                                                                                                                                                                                                                       310               302
                                                                                                                                       Announced
    Jul-02




                               Jan-03

                                        Feb- 03

                                                   Mar- 03



                                                                      May- 03

                                                                                Jun-0 3




                                                                                                                        Jan-0 4

                                                                                                                                  Mar- 04

                                                                                                                                            May -04

                                                                                                                                                      Jul-04




                                                                                                                                                                                 Jan-05

                                                                                                                                                                                          Mar- 05

                                                                                                                                                                                                    May- 05

                                                                                                                                                                                                               Jul-05




                                                                                                                                                                                                                                          Jan-06

                                                                                                                                                                                                                                                   Feb- 06
                                                                                                                                                                                                                                                             May- 06

                                                                                                                                                                                                                                                                       Jul-06




                                                                                                                                                                                                                                                                                                   Jan-0 7

                                                                                                                                                                                                                                                                                                             Mar- 07
             Oct-02

                      Dec-02




                                                                                                    Sep -03

                                                                                                              Nov-03




                                                                                                                                                               Sep-04
                                                                                                                                                                        Nov-04




                                                                                                                                                                                                                        Sep-05
                                                                                                                                                                                                                                 Nov-05




                                                                                                                                                                                                                                                                                Sep-06

                                                                                                                                                                                                                                                                                          Nov-06
                                                             Apr-03




                                                                                          Aug -03




Notes: PAI is “President’s ADAP Initiative”. ADAPs were required to enroll Medicare Part D eligible clients,
or stop paying for Part D covered services, by May 15, 2006.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                                                      Chart 19


                                            Medicare Part D:
                                    ADAP Policies, as of November 2006




                                                                                                                                                       33
                                                                                                         27                                                                                         27                                             25
                                                             23




                                                  Pay Part D                                  Pay Part D                                       Pay Part D                         Disenroll Clients   Provide
                                                  Premiums                                   Deductibles                                        Co-pays                            in at Least One   Medications
                                                                                                                                                                                     Beneficiary       During
                                                                                                                                                                                      Category      Coverage Gap




Note: 48 ADAPs reported data.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                                                                                                                                                                                                                       11
                                                                                                                     Chart 20


                                                                      The National ADAP Budget,
                                                                            FY 1996-2006
                                                          $1,600
                                                                                                                                                        $1,386.3
                                                          $1,400                                                                                 $1,299.0
                                                                                                                                          $1,186.9
                                    Millions of Dollars   $1,200                                                                   $1,070.5
                                                                                                                             $961.7
                                                          $1,000                                                    $870.2
                                                                                                         $779.0
                                                           $800                                 $711.9
                                                                                       $543.7
                                                           $600
                                                                             $393.4
                                                           $400
                                                                   $200.4
                                                           $200

                                                             $0
                                                                     1996    1997      1998     1999        2000     2001     2002      2003    2004      2005     2006
                                                          120%

                                                          100%            96%
                                       Percent Change




                                                           80%

                                                           60%
                                                                                    38%
                                                           40%                                  31%
                                                                                                                     12%      11%        11%      11%
                                                           20%                                           9%                                                   9%
                                                                                                                                                                          7%
                                                            0%
                                                                     96-97     97-98      98-99       99-00        00-01     01-02      02-03     03-04     04-05        05-06


Notes: 51 ADAPs reported data. Title II earmark and supplemental funding data available for all 54 jurisdictions.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                     Chart 21


                                                                          State Funding for ADAPs,
                                                                                FY 1996-2006
                                   $350
                                                                                                                                                              $304.9
                                   $300
                                                                                                                                                   $252.8
             Millions of Dollars




                                   $250                                                                                                   $226.6

                                   $200                                                                                    $171.9
                                                                                                             $149.6 $160.4
                                   $150                              $117.4 $119.4 $125.5 $128.8
                                   $100
                                                           $50.4
                                   $50
                                     $0
                                                            1996     1997       1998     1999        2000     2001     2002       2003     2004     2005      2006
                                   140%
                                                                   133%
                                   120%

                                   100%
             Percent Change




                                    80%

                                    60%
                                                                                                                                          32%
                                    40%
                                                                                                         16%                                            12%
                                    20%                                                5%                            7%          7%                                 21%
                                                                             2%                 3%
                                      0%
                                                             96-97     97-98      98-99       99-00      00-01       01-02      02-03     03-04    04-05         05-06

Note: 51 ADAPs reported data.
Source: Kaiser & NASTAD, National ADAP Monitoring Project Annual Report, April 2007.




                                                                                                                                                                                 12
                                   Chart 22


           Ryan White Reauthorization:
              Changes for ADAPs

• Minimum formulary
   – At least one ARV from each approved class of ARV medications
     (currently four classes)
• ADAP supplemental
   –   Increase from 3% to 5% of the ADAP earmark
   –   Matching requirements can be waived in some instances
   –   Change in eligibility
   –   Hold harmless “delinked” from ADAP supplemental
• Funding formula
   – Incorporation of living HIV cases in addition to actual (previously
     estimated) living AIDS cases
• Changes to other parts of Ryan White
   – 75% of funds must be spent on core medical services
   – Part B base formula modifications
   – All territories eligible for ADAP




                                   Chart 23




                          The Outlook
• Critical role of ADAPs will continue
   – Growing population of people living with HIV/AIDS
   – Filling the “gap”
• Key areas to monitor include:
   – Impact of Part D has been significant
        • Relief of pressure on ADAPs; contributed to reduction in waiting lists
        • But is it a time-limited effect? What will happen when clients reach the
          doughnut hole?
   – Ryan White reauthorization impacts?
        • Some states will have to change their formularies; also, new ARV
          classes?
        • Potential funding shifts
   – Waiting lists over time
   – Role of States
   – Other factors such as the CDC’s new recommendations for
     routine testing




                                                                                     13

						
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