The document discusses health care reform opportunities and challenges for people living with HIV/AIDS. It outlines the current access to care crisis, including high rates of uninsured individuals with HIV/AIDS and limited Medicaid access in most states. It then describes major opportunities created by health care reform, such as expanded Medicaid eligibility, enhanced Medicaid care coordination, increased access to Medicare prescription drugs, private insurance market reforms, and new investments in prevention and care delivery. Finally, it discusses key challenges in ensuring these opportunities translate into real benefits for people with HIV/AIDS.

1. Health Care Reform:
Opportunities and Challenges for
People Living with HIV and AIDS
Robert Greenwald
Harvard Law School Center for Health Law & Policy Innovation
Treatment Access Expansion Project
April 2012

2. PresentationOutline
Presentation Outline
Part 1:
Why We Need Health Care Reform:
The Current Access to Care Crisis
Part 2:
Major Health Care Reform Opportunities:
The Changing Health Care Landscape
Part 3:
Key Health Care Reform Challenges:
Turning Opportunities into Realities
Part 4:
Next Steps

3. Part 1:
Why We Need Health Care Reform:
The Current Access to Care Crisis

4. HIV/AIDS v. General Population:
Health Care Coverage
General Population PWHIV/AIDS
SOURCE: Kaiser Family Foundation based on Fleishman JA et al., “Hospital and Outpatient Health Services Utilization Among HIV-Infected Adults in Care 2000-2002, Medical
Care, Vol 43 No 9, Supplement, September 2005.; Fleishman JA, Personal Communication, July 2006

5. U.S. Population and PWHIV
Income & Unemployment
62%
45%
US Population
People with
HIV/AIDS
8%
5%
Income <$10,000 Unemployed
SOURCE: Kaiser Family Foundation based on US Census Bureau, 2006; Kaiser State Health Facts Online; Cunningham WE et al.
“Health Services Utilization for People with HIV Infection Comparison of a Population Targeted for Outreach with the U.S.
Population in Care.” Medical Care, Vol. 44, No. 11, November 2006. NOTE: US income data from 2005, US unemployment data
from 2006. 1998 estimates were also 8% and 5%, respectively, rounded to nearest decimal; HCSUS data from 1998.

6. Medicaid Is an Essential Source of HIV Care
BUT Access is Limited in Most States…
% of HIV Population Enrolled in Medicaid
40.00%
35.00%
30.00%
25.00%
20.00%
15.00%
10.00%
5.00%
0.00%
South Northeast Midwest West U.S. Average
Source: Susan Reif, et al., Duke Center for Health Policy and Inequalities Research, Southern AIDS Strategy Initiative, HIV/AIDS Epidemic in the
South Reaches Crisis Proportions in Last Decade (2012).

7. Medicaid Is A Disability Program:
(Not a Health Care Program) in Most States
Spending per Medicaid user with and without HIV by type of service (2007)
~ 74% of people living
with HIV/AIDS on
Medicaid are eligible
because of disability
Source: Jen Kates, Kaiser Family Foundation, Medicaid and HIV: A National Analysis
(October 2011)

8. Ryan White Program Funding is Not Keeping Pace with Increased Need
Number of People Living with AIDS in the US vs. Ryan White Funding (adjusted for inflation)
2002 2003 2004 2005 2006 2007 2008
Sources: “Estimated Number of Persons Living with AIDS,” Centers for Disease Control and Prevention,
http://www.cdc.gov/hiv/topics/surveillance/resources/reports/2007report/table12.htm; Ryan White Appropriations History, Heath Resources and Services Administration,
ftp://ftp.hrsa.gov/hab/fundinghis06.xls. Inflation calculated using http://www.usinflationcalculator.com;
www.cdc.gov/hiv/surveillance/resources/reports/2009report/pdf/table16a.pdf; “Funding, FY2007-FY2010 Appropriations by Program, hab.hrsa.gov/reports/funding.html

9. Status Quo = Public Health and
Access to Care Crisis
Demand for
Ryan White
care and
services > 42-59% of
Thousands
funding low-income
on ADAP
PWHIV not in
waitlists
regular care
Impossible
29% of The for PWHIV to
obtain
PWHIV Current individual
uninsured
Crisis insurance
policy

10. We Are Not Alone!
Number of Uninsured Americans
60 50.9 Million
46.6 Million
50 41.2 Million
40
30
20
10
0
2001 2005 2009
Sources: Center on Budget Policies and Priorities, The Number of Uninsured Americans is at an All-Time High (2006),
http://www.cbpp.org/files/8-29-06health.pdf; Kaiser Family Foundation, The Uninsured: A Primer (2010),
http://www.kff.org/uninsured/upload/7451-06.pdf.

11. Part 2:
Major Health Care Reform Opportunities:
The Changing Health Care Landscape

12. 1. Expands and Improves Medicaid
• Expands Eligibility in Most States
– Starting in 2014, disability requirement is eliminated for
most up to 133% FPL ($14,484 indiv./$29,726 fam. of 4)
• Improves Services
– Medicaid expansion includes Essential Health Benefits
(EHB) for the newly-eligible
• Improves Reimbursement
– Enhances reimbursement for primary care providers in
2013-14
• Streamlines Application and Enrollment

13. 2. Supports Enhanced & Coordinated Care
Through Medicaid Health Home Program
• Gives states the option to provide cost-effective, coordinated
and enhanced care and services to people living with chronic
medical conditions*
• States are eligible for planning grants and increased federal
support – 90% FMAP for first two years of the program
• Reduces inpatient and emergency room costs while improving
health outcomes through both enhanced care coordination and
service integration
– high intensity care/service management, integrated physical and
behavioral health services, health promotion, patient and family support,
and prioritized housing
* Successful advocacy led to inclusion of people living with HIV/AIDS

14. 3. Increases Access to
Medicare Prescription Drugs
• 50% discount on all brand-name
prescription drugs
• AIDS Drug Assistance Program (ADAP)
contributions now count toward
copayment obligations
• Part D “donut hole” phased-out by 2020

15. 4. Reforms Private Insurance and
Reduces Discriminatory Insurance Practices
• Cannot be denied insurance because of
HIV (or other chronic condition) (2014)
• Health plans cannot drop people from coverage
when they get sick (in effect)
• No lifetime limits on coverage (in effect)
• No annual limits on coverage (2014)

16. Promotes Access to Private Insurance
Through State-Based Exchanges
• Starting in 2014, creation of consumer-friendly
exchanges to purchase private insurance
• Federal subsidies for people with income up to
400% FPL ($43, 560 single/$89,400 for family of four)
• Plans cannot charge higher premiums based on
gender or health status
• Plans must include Essential Health Benefits
• Plans have to contract with “community
providers,” including Ryan White Programs

17. 5. Health Care Reform Invests in
Prevention, Access to Care, and Innovation
• Prevention and Public Health Fund
– $500 million in 2010 and increasing annually up to $2
billion in 2015 for community prevention initiatives
• Community Health Center Expansion
– $11 billion in funding for the operation, expansion and
construction of health centers over the next five years
• Health Workforce Investments
– Expands primary care workforce
– Expands National Health Service Corps
• Care Coordination Investments
– Center for Medicare and Medicaid Innovation (CMMI)

18. Health Care Reform and HIV/AIDS Care:
Looking Ahead to 2014
Individuals with income up Eligible for Medicaid based on income alone
to 133% FPL (Ryan White Program still needed to fill in
gaps not covered by Medicaid)
Individuals between 133% Eligible for premium tax credits and cost-
and 400% FPL sharing subsidies to purchase private
insurance (Ryan White Program still needed
to fill gaps not covered by private insurance)
Individuals with unmet Ryan White Program still a safety net for:
care and treatment needs insured people with unmet need and gaps in
services legal immigrants not eligible for
Medicaid, and undocumented immigrants

19. Massachusetts: A Case Study of a Post Health
Care Reform State in a Pre-Reform Country
• Expanded Medicaid coverage to people living with HIV with an
income up to 200% FPL (2001)
• Required every uninsured adult to purchase insurance or pay
a fine (2006)
• Required all employers with 11 or more workers to “fair and
reasonably “contribute to their employees health insurance
or pay an assessment (2006)
• Enacted private health insurance reform with a heavily
subsidized insurance plan for those with income up to 300%
FPL (2006)

23. Part 3:
Key Health Care Reform Challenges:
Turning Opportunities into Realities

24. 1. Ensuring a Smooth Transition for People
Living With HIV/AIDS and Their Providers
• Ensuring effective integration of Ryan White Program
models of care and providers into Medicaid and Exchange
networks (federal and state)
• Creating simple, streamlined application (federal and state)
• Ensuring appropriate and effective outreach, patient
navigation and coordination between health systems to
minimize interruptions in care (state)
• Maximizing effectiveness by including HIV and AIDS
community in state decisions on exchange and Medicaid
expansion design (state)

25. 2. Ensuring the EHB Package Provides the Level and
Scope of Services Needed by People Living with HIV/AIDS
Congressionally Mandated Essential Health Benefits
• Ambulatory • Prescription drugs
• Emergency • Rehabilitative and habilitative
• Hospitalization • Laboratory
• Maternity/newborn care • Preventive and wellness and
• Mental health and chronic disease management
substance use disorder • Pediatric services
• Ensuring comprehensive coverage that meets care and
treatment needs of people living with HIV (HHS and state)
• EHB must be the floor, not the ceiling to meet complex health
care needs (state)

26. HHS Essential Health Benefits (EHB):
Benchmark Approach
• States may pick from one of ten plans which will become
the “benchmark” for purposes of EHB
– Any of the 3 largest small group insurance products by
enrollment
– Any of the 3 largest state employee health benefit plans
– Any of the 3 largest national Federal Employee plans
– The largest commercial non-Medicaid HMO in the state
• Benchmark chosen must include the ten categories listed in
the ACA (if not, wrap-around allowed)

27. What Does a Benchmark Approach Mean for
Access to HIV/AIDS Care and Treatment?
• Flexibility for most states likely means bare bones plans
– Small group market has been limited and costly
• State variation & disparities continue
• Mandates may be included at state option (at least for
2014 & 2015)

28. What Are the Next Steps for EHB?

29. 3. Medicaid Health Home:
Ensuring the Needs of Medicaid Beneficiaries Living with
Serious Chronic Illnesses are Addressed
• Provides state with the opportunity to manage the whole
patient successfully and control care costs
• Ideas on patient engagement include offering PCPs stipends,
waiving copayments for evidence-based treatment’ giving
patients monetary incentives for achieving medical milestones
• Ideas for improving care coordination include innovative
payment models, shared saving arrangements, care
management fees, enhanced capitation, enhanced support of
PCPs, co-location of services, telemedicine, extended hours
• Provides an opportunity for integration of essential Ryan
White Program support services in Medicaid

30. New York’s Health Home Savings Estimates
State Fiscal Year 2011-12 2012-13 2013-14 2014-15
State Savings $-33.20 $-112.40 $-119.20 $-95.10
Total Savings $-46.30 $-162.90 $-186.40 $-165.90
(Dollars in Millions)

31. 4. Leveraging New Investments in
Prevention & Wellness, Health Centers and Workforce
• Educating state officials and community –based
organizations on potential funding opportunities
– Securing funding to support HIV prevention and
wellness
– Ensuring health center investments include
support for comprehensive care for people with
HIV
– Securing funding for training and retention of
HIV/AIDS primary care physicians and specialists

32. 5. Ensuring Access to Essential Services:
Covering the Gaps
• Essential services needed by people living with
HIV/AIDS NOT fully covered by Medicaid:
– Dental services
– Nonmedical case management
– Nutrition services
– Transportation
– Mental health services?
Ryan White HIV/AIDS Program
– Peer support services
– Premium co-pay assistance
• Medicaid will NOT be available for:
– Undocumented immigrants
– Legal immigrants within the 5 year ban

33. Massachusetts:
Utilization of ADAP
YEAR Full Pay Co-Pay Premiums Total Cost
(including rebates)
FY02 $ 7,947,832 $ 648,030 $ 1,120,512 $ 9,716,375
FY03 $ 7,961,862 $ 963,205 $ 1,778,272 $ 10,703,342
FY04 $11,174,879 $ 1,553,758 $ 3,159,200 $ 15,887,838
FY05 $ 9,756,201 $ 1,839,807 $ 6,112,132 $ 17,708,142
FY06 $ 4,634,683 $ 1,893,206 $ 7,015,306 $ 13,543,197
FY07 $ 4,147,713 $ 2,071,118 $ 8,366,273 $ 14,585,106
FY08 $ 4,184,279 $ 2,083,431 $ 9,323,821 $ 15,591,533
FY09 $ 4,695,780 $ 2,567,789 $ 8,835,835 $ 16,099,405

34. Part 4:
Next Steps

35. Know the Facts: Health Care Reform Will
Reduce the Federal Deficit
Federal v. State Share of From the Congressional
Medicaid Expansion Budget Office and the Joint
Committee on Taxation:
“The effects . . . [of health care
reform] on direct spending and
revenues related to health care
will reduce federal deficits by
$210 billion over the 2012-2021
period.”
Sources: Center on Budget Policies and Priorities, Hatch-Upton Report on Costs to States of Expanding Medicaid Relies on
Seriously Flawed Estimates (2011), http://www.cbpp.org/files/3-16-11health.pdf.
Congressional Budget Office , CBO’s Analysis of the Major Health Care Legislation Enacted in March 2010, (March 2011),
http://www.cbo.gov/ftpdocs/121xx/doc12119/03-30-HealthCareLegislation.pdf

36. 2012 Supreme Court Decision & Elections
= Watershed for Health Care
Control of
Supreme House and
Court ACA Senate
Decision
Control of
the White
House
Will the ACA be fully implemented?
Will deficit reduction be achieved responsibly?
Will our health care safety nets (Medicaid, Medicare, Ryan
White Program) be preserved?

37. 5. Get involved…
At the Federal At the State
Stay Informed
Level Level
• Take every • Talk to state officials • Keep your finger on
opportunity to about the needs of the pulse of federal
influence Congress people living with HIV and state legislative
and other federal and AIDS as states and regulatory HCR
officials expand Medicaid and initiatives
create Exchanges
• WE CAN HELP!
• Encourage state
officials to take
advantage of Medicaid
Health Homes and
other opportunities

38. Available Resources
HRSA Resources, www.hrsa.gov
• Planning grants
• Technical assistance
Treatment Access Expansion Project, www.taepusa.org
AIDS United, www.aidsunited.org
Dose of Change, www.doseofchange.org
HIV Medicine Association, www.hivma.org
Health Care Reform Resources
• Kaiser Family Foundation, www.kff.org
• FamiliesUSA, www.familiesusa.org
• Community Catalyst, www.communitycatalyst.org
• Healthcare.gov, www.healthcare.gov