1. What You Need to Know about The New Health Reform Law Lisa Codispoti IDF Board Member and Patient Senior Counsel, National Womens Law Center June 25, 2011

2. Challenges our Community Faces

3. Inadequate Insurance Coverage Multiple Chronic Conditions Coverage for specialists of choice Prescription drug coverage IVIG or SubQ coverage Switching to tiers of coverage

4. Finding & Keeping Affordable, Comprehensive Health Insurance Insurance Rejection due to pre-existing conditions Health Status rating (premiums set based on your health- also by age, gender) Pre-existing condition exclusions

5. What the Health Care Law Does

6. In Effect Now Adult children can stay on parents plan to age 26 No pre-existing condition exclusions for kids <19 New insurance plans must cover recommended preventive screenings without cost sharing like co-pays or deductibles Insurance plans for uninsured people with pre- existing conditions PCIP Plans – no more expensive than for a healthy person Lifetime limits on benefits PROHIBITED Annual benefit limits – restricted (prohibited 2014)

7. Insurance Reforms: 2014 Guaranteed issue – no insurance company can reject you from purchasing their insurance policy due to a pre-existing condition no health status rating- (premiums can only vary based on age, smoking status, family size, and geography) no pre-existing condition exclusions or discrimination

8. Exchanges New insurance marketplaces to shop for, compare insurance plans For individuals (without affordable employer coverage) and small employers Available plans are categorized into 4 tiers of coverage: bronze, silver, gold, platinum Plans generally cover the same health care services- the difference is based on how much you pay out of pocket. Bronze – highest cost-sharing; Platinum- lowest cost sharing

9. Comprehensive Benefits All plans sold in exchanges must cover: Ambulatory patient services Emergency services Hospitalization Maternity and newborn care Mental health and substance use disorder services, including behavioral health treatment Prescription drugs Rehabilitative and habilitative services and devices Laboratory services Preventive and wellness services and chronic disease management Pediatric services, including oral and vision care

10. Affordability Assistance Medicaid expanded – up to 133% poverty » Single person: $14,500 » Family of 4: $29,725 Sliding-scale subsidies –help with premiums, cost sharing (up to 400% of poverty – or $88,000 for family of 4) Caps on Out-of-Pocket costs – no plan can charge more than $6,000/$12,000 (single/family) Medicare Prescription drug coverage gap – phased out by 2020 (now: 50% brand name discount when in the gap)

11. A few other insurance bits: New appeal rights – to challenge insurance determinations Insurers will have to justify and states will review premium increases

12. Shared Responsibility Provisions Employers: Over 50 employees must offer health insurance to employees or face a fee if their employees get subsidized coverage through the exchange Individuals: Unless exempt (ie: due to cost or hardship), must have health insurance or pay a fee

13. Is the law perfect? Heck no – lots of stuff they didnt get to, like our Medicare IVIG home infusion problem But its a start – and for a lot of people, its a lot more than they had They passed Medicare 47 years ago – and its still being tweaked!!

14. Whats happening now? Federal government (US Dept of Health & Human Services) issuing regulations to provide greater details on many pieces of the law States are starting to pass legislation to operate the exchanges starting in 2014 Several lawsuits challenging the law

15. So what should we be doing until 2014? Advocacy Advocacy at this stage is even more important! This is to be sure they get the details of the law right Be ready – when we send an Action Alert- we need your help! IDF was critical in advocacy for the primary immunodeficiency community leading up to passage of this law IDF continues to advocate on behalf of our community during implementation

16. Some questions you may have: What will happen to the health insurance I have through my employer? Will my immune globulin (IVIG or SubQ) be covered? Will they cover my brand? What about my home infusion service? Will all of my prescriptions be covered? What about formularies? Will I be able to see my immunologist of choice?

17. Thank You!