Britten PundNational Alliance of State & Territorial AIDS Directors

August 4, 2014

The State of ADAPs

Presentation Agenda

Emerging trends in ADAP– FY2013 Year in Review– Looking Ahead to FY2014 and FY2015– ADAPs role in public health

Update on the ADAP crisis– ADAP waiting lists– ADAP cost-containment

Questions and Answers

Overview of NASTAD

NASTAD is an international non-profit association of U.S. state health department HIV/AIDS program directors who administer HIV/AIDS and viral hepatitis programs funded by U.S. state and federal governments.

NASTAD was established in 1992 as the voice of the states.

NASTAD is governed by a 20 member, elected Executive Committee charged with making policy and program decisions on behalf of the full membership.

NASTAD has a Washington, DC headquarters with 38 staff and field offices/programs in Bahamas, Botswana, Ethiopia, Guyana, Haiti, Trinidad, South Africa and Zambia with 65 staff.

NASTAD Mission and Vision

Mission

NASTAD strengthens state and territory-based leadership, expertise and advocacy and brings them to bear on reducing the incidence of HIV and viral hepatitis infections and on providing care and support to all who live with HIV/AIDS and viral hepatitis.

VisionNASTAD’s vision is a world free of HIV/AIDS and viral hepatitis.

FY2013 Year in Review

The National ADAP Budget, by source, FY1996-FY2013

FY1996 $200 m

FY1997 $413 m

FY1998 $544 m

FY1999 $712 m

FY2000 $779 m

FY2001 $870 m

FY2002 $962 m

FY2003 $1,071

m

FY2004 $1,187

m

FY2005 $1,299

m

FY2006 $1,386

m

FY2007 $1,428

m

FY2008

$1,515 m

FY2009 $1,582

m

FY2010 $1,789

m

FY2011 $1,887

m

FY2012 $2,032

m

FY2013 $2,010

m

26%

40%

53%

65% 68% 66% 64% 65% 61% 59% 56% 54% 51% 49% 45% 43% 41% 39%

25%

28%

22%

18%17% 17% 17% 16%

19%19% 22%

21%21%

14% 19%16%

13%11%

6%

5%

6%

7%7% 7% 9% 10% 12% 15% 17%

18% 21%

31% 29%33%

36% 40%

43%

26%19%

11% 9% 10% 10% 9% 7% 7% 5% 7% 7% 7% 6% 8% 10% 10%

ADAP Earmark State Rebates

Other (includes Part B ADAP Supplemental, Part B Base directed to ADAP, Part B Supplemental directed to ADAP, ADAP Emergency Funding, Part A directed to ADAP)

ADAP Client Enrollment and Utilization

2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013

0

50,000

100,000

150,000

200,000

250,000

128,465 133,572 134,128 141,856 145,799 151,200 168,707

179,009 179,988195,001

210,411

4%

0%

6%

3%4%

12%

6%

1%

8% 8%

ADAP Client Enrollment, June 2003-2013

Cli

en

ts E

nro

lled

1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013

0

20,000

40,000

60,000

80,000

100,000

120,000

140,000

160,000

180,000

31,31743,494

53,76561,822

69,40776,743 80,035 85,825

94,577 96,404 96,121 101,987110,047

125,479135,596 138,173 144,509

152,48739%

24%

15%12% 11%

4%7%

10%

2%0%

6% 8%

14%

8%

2%5% 6%

ADAP Client Utilization, June 1996-2013

Cli

en

ts S

erv

ed

ADAP Client Demographics

Non-Hispanic Black/African

American34%

Non-Hispanic White33%

Hispanic27%

Asian2%

Native Hawaiian/Pacific Is-lander<1%

American Indian/Alaskan Na-tive<1%

Multi-Racial1%

Other1%

Unknown2%

ADAP Clients Served, by Race/Ethnicity, June 2013

Male78%

Female21%

Transgender<1%

Unknown<1%

ADAP Clients Served, by Gender, June 2013

ADAP Client Demographics (continued)

<12 Years<1%

13-24 Years4%

25-44 Years41%

45-64 Years50%

>64 Years4%

Unknown<1%

ADAP Clients Served, by Age, June 2013

≤100% FPL43%

101-138% FPL10%

139-200% FPL15%

201-300% FPL13%

>400% FPL1%

ADAP Clients Served, by Income Level, June 2013

301-400% FPL 4%

Unknown 13%

ADAP Insurance Coordination,June 2013 and FY2013

2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 -

10,000

20,000

30,000

40,000

50,000

60,000

$-

$40

$80

$120

$160

$200

$240

$280

$320

$360

$400

5,272 7,167 7,277

12,311 13,744

20,960

15,843

30,621

34,341

41,095

46,653

52,568

$19 $30 $38

$75 $84

$75

$107

$159

$194

$268 $227

$397

Clients Served and Estimated Expenditures in Insurance Purchasing and Continuation, 2013

Nu

mb

er

of

Cli

en

ts (

Jun

e)

Esti

mate

d F

iscal

Year

Exp

en

dit

ure

s (

in m

illi

on

s)

Looking Ahead to FY2014 and FY2015

Congressional Outlook

The 113th Congress has grown increasingly partisan, resulting in very little accomplishment.– Have passed only 126 laws since January 2013; lowest level of

productivity in many years

In the 107th Congress (2000-2001), the Senate and House were controlled by different parties and still managed to enact 200 new laws.

The House is scheduled for 12 working days between now and then

Congress New Laws Enacted

113th (2013-2014) 125

112th (2011-2012) 140

111th (2009-2010) 198

110th (2007-2008) 260

Congressional Outlook(continued)

Many “must address” issues:

– Veterans’ Affairs health care access– Unaccompanied Immigrant Minors – Highway Trust Fund– Surface Transportation Bill– Tax Extenders– Terrorism Risk Insurance Act– Export‐Import Bank reauthorization– Foreign Affairs– 12 Appropriations Bills

Elections Outlook

FY2014 Funding

In FY2014, ADAPs were funded at $900.3 million, a $14 million increase. Part B Base was funded at $414.7 million, a $9.5 million increase

– Increases were due to the alleviation of sequestration

FY2014 was the first year without the hold harmless provision, which shifted allocations of funding awards

FY2015 Funding

The Bipartisan Budget Act of 2013 established spending caps and reduced sequestration for FY2015

The FY2015 302b allocations for the Labor, Health and Human Services bill are similar to FY2014, however there are increasing funding needs for other programs

The debt ceiling will expire in March 2015

FY2015 Funding(continued)

President Obama’s budget included flat funding for ADAP and Part B Base

The Senate LHHS Subcommittee mark included a $5 million increase for ADAP and flat funded Part B Base

– The proposed bill also redistributes SPNS funding throughout the Ryan White Program parts instead of a separate funding line

FY2015 Funding(continued)

The House and Senate Appropriations Committees have no plans to mark up a LHHS bill until after the November election

There will be a continuing resolution (CR) through November, possibly January – House is readying a CR for vote before the

August recess

Awards will potentially be delayed

FY2016 Funding

President Obama’s last full fiscal year in office

Potential changes in House and Senate

Sequestration will impact FY2016 funding– Budget cap for non-defense discretionary funding

is $494 billion, an increase of $1.6 billion from FY2015

– Appropriators will have to allocate funding at this level to avoid across-the-board cuts

Low chance of another “grand bargain”

Ryan White Next Steps

Ryan White still critical despite ongoing implementation of the Affordable Care Act

Part B and ADAPs continue to see growth in programs and strive to address unmet need:– From 2003 to 2013, enrollment in ADAPs increased by

64%. Forty-four ADAPs used funds for insurance purchasing and

continuation in 2013 Part B programs necessary to address gaps in covered

populations and services and to ensure that clients receive all support necessary to access and maintain new coverage options (both in premium and co-pay assistance and support services)

Ryan White Next Steps(continued)

AIDS Healthcare Foundation (AHF) has introduced the “Ryan White Patient Equity and Choice Act” (HR 4260)o Introduced by Rep. Renee Elmers (R-NC), Bennie Thompson

(D-MS) and Eddie Bernice Johnson (D-TX). Bill proposes:

o To ensure that funding to jurisdictions under Part B and Part A does not varyby more than 5% (calls for Secretary report on how to do that);

o Requires ADAPs to have pharmacy network that includes specialty pharmacies;

o Tightens up cover medical services and waiver processo Bill is not getting traction in Congress

The Future of Ryan White: Congressional & Community Conversations

NASTAD and majority of community still feel it is best to not seek a reauthorization at this time

Congressional staffers have said we need “at least one year of data on ACA implementation” before moving forward

Changes ahead could potentially complicate situation– Leadership changes to Committees of jurisdiction

Energy & Commerce: Rep. Waxman retiring; Rep. Pallone (NJ) likely to replace him (although Rep. Dingell (MI) is a possibility) as Ranking Member

Health, Education, Labor & Pensions (HELP): Sen. Harkin retiring; Sen. Murray (WA) likely to become Chair

The Future of Ryan White: Congressional & Community Conversations

(continued)

Possible complicating changes (continued):– 2014 Congressional elections; Republicans will retain

control of House and Democrats will likely retain control of Senate (Senate is more up in the air)

– Community already worrying about implications of 2016 Presidential election and its impact on legislation

Unknown appropriation levels in near-future Focus on drug pricing with new ADAP Crisis Task Force

negotiations Focus on 340B program overall – Congressional and

regulatory efforts– Part C and D RW community push

The Future of Ryan White: Congressional & Community Conversations

(continued)

Messages from Congressional staff at FAPP RW Work Group meeting:– Many priorities in 2014

Medicare “doc fix” Authorization bills with sunset provisions Beginning to look at discretionary health bills with

ONLY medical component– Need to have state “case studies” showing how

allocation of funds changed after ACA implementation Both Medicaid expansion & non-expansion states

– Need to have data to describe the ongoing importance of both “core medical” & “support services”

340B and ADAP

The Office of Pharmacy Affairs (OPA) intended to release a “mega-regulation” on 340B this summer and the rule on ADAP rebates in December

In May, a judge ruled that on OPA’s orphan drug rule and found that OPA does not have the authority to make rules

This has postponed the original timelines for rule release. OPA is currently working on rereleasing the orphan drug rule and then will address the “mega-regulation” and ADAP rebate rules

NASTAD released a Best Practice for Shared ADAP and 340B Drug Pricing Program Clients earlier this month

ADAP and the Affordable Care Act

25,000 ADAP Clients Transitioned to Medicaid Expansion and Qualified Health Plans (QHPs)

AL

ARGA

ID

IL IN

KY MO

MT

NV

NH

OH

SC

SD

TX

VA

WY

OK

ME

MD

NJ

NY

OR

AK

CO

LA

UT

CAKS

MS

FL

HI

NMAZ

ND

MN

IA

WIMI

NE

WA

PA

NCTN

WV

VT

DE

CT

DC

Medicaid QHPs Total12,004 13,129 25,133

Challenges and Priorities

Challenges• Availability of plan information• Formulary gaps• High cost sharing/co-insurance• Political environment in many states made

it difficult for state employees to participate in ACA implementation activities

• Many clients remain ineligible because their state has not expanded Medicaid

Priorities/Solutions• Advocate for Medicaid expansion• Increase Ryan White capacity to assist

clients with costs• Identify work-arounds to obtaining

insurance information• Advocate with federal government, state

government, and insurers about importance of formulary coverage for ALL ARVs

• Continue to educate clients about ACA and prepare for continued enrollment efforts in November

ADAP and Affordable Care Act

QHPs have extremely high cost sharing and co‐insurance costs.

QHP formulary issues – commonly prescribed single-tablet regimens being left off.

Pharmacy and provider networks do not include Ryan White Program providers or ADAP pharmacies.

24 states are not expanding Medicaid.– 68% of ADAP clients in non-Medicaid expansion

states have an income below 138% FPL.

Some ADAP clients have remained ineligible for ACA.

ADAP and Affordable Care Act (continued)

Looking Forward:

– Mitigating churn between Medicaid, QHPs and other forms of coverage

– HRSA is examining if ADAPs can cover any costs when reconciling the Advance Premium Tax Credits

– States may not disenroll clients who do not transition to new coverage options

ADAPs Role in Public Health

Using the ACA to Tackle the Treatment Cascade

ADAP’s Role in Public Health

ADAP remains the safety net provider for many people living with HIV.

ADAPs and the rest of the Ryan White Program provide more comprehensive services than QHPs and Medicaid.

Health insurance does not replace public health.

ADAP in a Reformed Health System

ADAP structure, pre- and post-health reform implementation– Traditional ADAP

Full payment of medications for those not eligible for coverage under the Affordable Care Act

– Insurance purchasing/continuation Wrap-around of Medicaid and Medicare

– Including Medicaid expansion and non-expansion states

Insurance purchasing – purchasing of a new policy– Including policies purchased through the Exchange

Insurance continuation – payment for an existing policy– Including policies purchased through the Exchange

ADAP in a Reformed Health System (continued)

What is the potential change in ADAP utilization between FY2013 and FY2014?– Client migration to Medicaid in a non-expanding state

Presumption that clients would not move – Client migration to Medicaid in an expanding state

Potential for clients to shift coverage to Medicaid– Client migration to Exchanges

Potential for clients to gain access to insurance for the first time, however ADAP may remain the payer for the policy (i.e., premiums, deductibles, and co-payments)

– Clients remaining on ADAP Individuals who are categorically ineligible for federal programs Individuals needing wrap-around coverage for an existing or

new insurance policy Individuals who churn Individuals who do not enroll

ADAP Waiting Lists

Factors Leading to Implementation of Cost-containment Measures

ADAPs reported the following factors contributing to consideration or implementation of cost containment measures:– Higher demand for ADAP services as a result of

increased unemployment– Level federal funding awards – Increased demand for ADAP services due to

comprehensive HIV testing efforts– Escalating drug costs– Budgets cuts in state Medicaid and other state programs

Demand for ADAP has not dwindled.

Access to Medications

Case management services are being provided to clients on ADAP waiting lists through:– ADAP– Ryan White Part B– Contracted agencies– Other agencies, including other Parts of Ryan White

ADAP waiting list states confirm that ADAP waiting list clients are receiving medications through other mechanisms.

ADAP Waiting Lists (35 individuals in 1 state)

as of July 24, 2014

StateNumber of

Individuals on ADAP Waiting List

Percent of the Total ADAP Waiting List

Date Waiting List Began

Utah 35 100% February 2014

Waiting List Organization and Access to Medications

Waiting List Organization: Waiting list clients are prioritized by one of two models: – First-come, first-served model:  placing individuals on

the waiting list in order of receipt of a completed application and eligibility confirmation.

– Medical criteria model:  based on hierarchical medical criteria based on recommendations by the ADAP Advisory Committee (1 ADAP). 

Access to Medications: Utah ADAP confirms that case management services assist clients in obtaining medications through the HarborPath ADAP waiting list program or pharmaceutical company patient assistance programs (PAPs) while clients are on the waiting list.

ADAP Cost-containment Measures

Factors Leading to Implementation of Cost-containment

Implementation of the Affordable Care ACT

Increase in clients/demand due to job loss/unemployment

Increase in clients/demand due to neighboring state's cost-containment measures/waiting list

Increased drug costs

Increased HIV testing leading to higher client enrollment

Increased insurance/Medicare Part D wrap around costs

Increased utilization from already enrolled clients

Reduced contribution from Part A into ADAP

Reduced contribution from Part B into ADAP

Reduced or insufficient federal ADAP funding

Reduced or insufficient state funding

State Medicaid or other state program budget cuts

3

2

2

5

2

3

2

1

2

8

6

1

ADAPs and Cost-containment

ADAPs with Other Cost-containment Strategies (since April 1, 2013, as of July 15, 2014)

Enrollment Cap Expenditure Cap Financial

EligibilityFormulary Reduction Other

Indiana

Utah

Arizona: monthly

Illinois: monthly

South Dakota: annual

Illinois Alabama

Alaska

Illinois

Louisiana

Maine

Georgia: cap on insurance premiums

Montana: service reductions in place

Questions and Answers

Resources

For an electronic copy of the 2014 National ADAP Monitoring Project Annual Report, please visit www.NASTAD.org.

For more information about the National ADAP Monitoring Project or the state of ADAPs, please contact Britten Pund at bpund@NASTAD.org.

Contact Information

Britten PundSenior Manager, Health Care Access

NASTADPhone: (202) 434.8090 

bpund@NASTAD.orgwww.NASTAD.org