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1: 1:00 00 -2: 2:15 am 15 am Prep epar aring for S Succe ccessful M Meet eetings* Atriu trium B Ballro llroom *Mandatory ry for a

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Me Megan an Ho Hold ldre ren

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Snack Break Sponsored By:

@RareAdvocates #RareDC2018 Rare_advocates

2: 2:45 45 -3: 3:30 30 pm Breakou kout t Session ions - Pick ck On One Tr Track ack A A: : De Deep Div p Dive Poli

• licy: I

Intr tro to to Medi dicare a and d Medic dicaid id Atriu trium B Ballro llroom Tr Track ack B B: : Lob

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Adu dult lts: Pra ractic ice M Meetin ings with ith Con

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ressio ional Sta Staff Hemis isph phere re B B

Med edica care Mik ike Egin ing

Executi tive D Directo ctor Rare A e Acces ess Projec ect

Med edica caid Morn

• rna A

A. . Murray, J JD

Senior V r Vic ice Pre President f for H r Health a and Dis isabilities First F Focu

• cus

Med edica care Mik ike Egin ing

Executi tive D Directo ctor Rare A e Acces ess Projec ect

Program and Impact

• n Rare Patients

Michael Eging Rare Access Project (RAP)

MEDICARE OVERVIEW

 Medicare was developed in the 1960s as part of Johnson Administration’s priority of providing a health care safety net for seniors who were at risk for health costs on fixed incomes

• A senior health program was contemplated and debated in the US

since the 1930’s

• The original Medicare program included Medicare Part A (Hospital

Insurance) and Part B (Medical Insurance)

• Managed care options were added and strengthened beginning in

the 1970s

• Additional protections and services added through 2000s, including

Medicare Part C (managed care option) strengthened

• Medicare Part D prescription drug benefit implemented in 2006

HISTORY

Hospital Insurance

MEDICARE PART A

 Part A Monthly Premium

• Most people don’t pay a Part A premium because they paid Medicare taxes while working. If

you don’t get premium-free Part A, you could pay up to $422 each month.

 Hospital Stay, in 2018 you pay

• $1,340 deductible per benefit period
• $0 for the first 60 days of each benefit period
• $335 per day for days 61–90 of each benefit period
• $670 per “lifetime reserve day” after day 90 of each benefit period (up to a maximum of 60

days over your lifetime)

 Skilled Nursing Facility Stay, in 2018 you pay

• $0 for the first 20 days of each benefit period
• $167.50 per day for days 21–100 of each benefit period
• All costs for each day after day 100 of the benefit period

MEDICARE PART A

Source: Medicare Fact Sheet, CMS, https://www.medicare.gov/Pubs/pdf/11579-Medicare-Costs.pdf

Medical Insurance

MEDICARE PART B

 Part B covers 2 types of services

• Medically necessary services: Services or supplies that are needed to diagnose or treat your

medical condition and that meet accepted standards of medical practice.

• Preventive services: Health care to prevent illness (like the flu) or detect it at an early stage,

when treatment is most likely to work best.

 Part B covers things like:

• Clinical research
• Ambulance services
• Durable medical equipment (DME)
• Mental health
• Inpatient
• Outpatient
• Partial hospitalization
• Getting a second opinion before surgery
• Limited outpatient prescription drugs

WHAT DOES IT COVER?

 Part B Monthly Premium

• The standard Part B premium amount in 2018 is $134 or higher depending on your income.
• However, most people who get Social Security benefits pay less than this amount ($130 on

average).

• Social Security will tell you the exact amount you’ll pay for Part B in 2018.

 You pay the standard premium amount (or higher) if:

• You enroll in Part B for the first time in 2018.
• You don’t get Social Security benefits.
• You’re directly billed for your Part B premiums.
• You have Medicare and Medicaid, and Medicaid pays your premiums. (Your state will pay

the standard premium amount of $134 in 2018.)

• Your modified adjusted gross income as reported on your IRS tax return from 2 years ago is

above a certain amount.

MEDICARE PART B

Source: Medicare Fact Sheet, CMS, https://www.medicare.gov/Pubs/pdf/11579-Medicare-Costs.pdf

 Medicare members are typically responsible for 20% of the total cost of treatment after meeting the deductible.  Medigap plans are designed to "fill the gap" of what Medicare members pay in

• ut-of-pocket Part B costs.

 A Medigap plan has a monthly premium  However, if you require potentially expensive Part B medicines, a Medigap plan can reduce your total medical costs.

MEDICARE PART B COPAYMENTS

Medicare Managed Care

MEDICARE ADVANTAGE

 Medicare Advantage Plans, sometimes called “Part C”, are offered by private companies approved by Medicare.  In addition to your Part B premium, you usually pay one monthly premium for the services included in a Medicare Advantage Plan.  Advantage Plans have different premiums and costs for services, so compare plans and understand plan costs and benefits before enrolling.

MEDICARE PART C

 What do Medicare Advantage Plans cover?

• All of the services that Original Medicare covers except hospice care.
• Original Medicare covers hospice care even if beneficiary is in a Medicare Advantage Plan.
• Coverage for all emergency and urgent care.
• Emergency coverage outside of the plan’s service area (but not outside the U.S.).
• Many Medicare Advantage Plans also offer extra benefits such as dental care, eyeglasses,
• r wellness programs.

 Most Medicare Advantage Plans include Medicare prescription drug coverage (Part D).  In addition to your Part B premium, you usually pay one monthly premium for the plan’s medical and prescription drug coverage.  Plan benefits can change from year to year.

MEDICARE PART C (CONTINUED)

Medicare Advantage Fact Sheet, CMS, https://www.medicare.gov/Pubs/pdf/11474.pdf

Outpatient Prescription Drug Benefit

MEDICARE PART D

 The 2018 standard Initial Deductible is $405

• The Initial Deductible is the amount that you pay before the plan begins to share in the cost of

coverage.

• Many Medicare Part D plans exclude lower-costing Tier 1 and Tier 2 drugs from the deductible,

providing immediate coverage for lower costing medications.

 The coverage gap begins when you and your drug plan have spent$3,750 on covered drugs.

• If you qualify, you may get help paying for the coverage gap. See

https://www.medicare.gov/your-medicare-costs/help-paying-costs/save-on-drug-costs/save-

• n-drug-costs.html for more information
• The coverage gap ends at $5000 in qualified expenditures, and the beneficiary moves into

the Catastrophic benefit

HOW DOES MEDICARE PART D WORK?

 The Donut Hole discount increases for generic drugs from 49% to 56%.

• Once in the 2018 Donut Hole and a generic medication has a retail cost of $100, you will

pay $44.

• And the $44 that you spend will count toward your 2018 out of pocket spending limit

(TrOOP)

 The Donut Hole discount increases for brand-name drugs from 60% to 65% and beneficiaries receive credit for 85% of the retail drug cost toward meeting total out-of-pocket maximum (the 35% of retail costs you spend plus the 50% drug manufacturer discount).

• If you reach the 2018 Donut Hole and purchase a brand-name medication with a retail cost
• f $100, you will pay $35 for the medication, and receive $85 credit toward meeting your

2018 out-of-pocket spending limit

GETTING THROUGH THE DONUT HOLE

Medicare Part D Overview, Q1, https://q1medicare.com/q1group/MedicareAdvantagePartD/Blog.php?blog=A-preview-of-2018-- CMS-releases-the-proposed-2018-Medicare-Part-D-standard-drug-plan-coverage-parameters&blog_id=613&frompage=18

 The Catastrophic Coverage portion of Medicare Part D begins when a beneficiary leaves the Coverage Gap or Donut Hole.

• The 2018 TrOOP threshold is $5,000.
• TrOOP is the dollar figure you must spend (or someone else spends on your behalf) to get
• ut of the Donut Hole or Coverage Gap and into the Catastrophic Coverage phase of your

Medicare Part D plan.

 In the 2018 Catastrophic Coverage phase, you pay a minimum of $8.35 for brand drugs or $3.35 for generics (or 5%, whichever is higher).  This means that for most rare disease indicated medicines, the beneficiary is responsible for the 5% copay

BEYOND THE DONUT HOLE—CATASTROPHIC COVERAGE

 Patients who qualify for “Extra Help” a Medicare program for the lower-income

• You automatically qualify for Extra Help if you have Medicare and meet any of these

conditions:

• Have full Medicaid coverage
• Get help from your state Medicaid program paying your Part B premiums (from a Medicare Savings

Program)

• Get Supplemental Security Income (SSI) benefits

 If you don't qualify for Extra Help, your state may have programs that can help pay your prescription drug costs.

• Contact your Medicaid office or your State Health Insurance Assistance Program (SHIP) for

more information.

CAN ANYONE HELP WITH CATASTROPHIC?

https://www.medicare.gov/your-medicare-costs/help-paying-costs/save-on-drug-costs/save-on-drug-costs.html#1320

 In some instances, non-profit foundations have been created to assist patients with copays  Many of these foundations operate under guidance from the Department of Health and Human Services Office of Inspector General  Donations can support beneficiary continuity of care by paying the the catastrophic costs

CAN ANYONE HELP WITH CATASTROPHIC? (CONTINUED)

 The President’s 2019 budget highlighted proposed structural Medicare changes that could include:

• Changing payment methodology to control costs in Medicare Part B for some medicines
• Capping out of pocket costs in Medicare Part D through rebalancing cost share in the

catastrophic (no patient 5 percent copay)

 Centers for Medicare and Medicaid Services Innovation Center focused on seeking creative solutions

• Alternative payment models (Quality Payment Program) for physicians
• https://innovation.cms.gov/

 The Rare Access Project (RAP) and other interested policy stakeholders are exploring Medicare issues

• Medicare Part A changes in payments for rare disease medicines to allow improved access to

rare medicines without hospitals being financially penalized

• Medicare Part D changes to cost sharing that would cap out of pocket costs for rare disease

patients

• The coalition has legislative language and is working with policy stakeholders
• Critical to the effort are patient experiences with the structural challenge of the catastrophic copay

IMPROVING RARE PATIENT CARE IN MEDICARE

 Educate beneficiaries on the programs before they transition into Medicare

• Invest in the time to choose a plan; whether Advantage or Part D

 Learn more about Medicare and get involved advocating for solutions

• Organizations such as RAP, and many others are focused on bringing effective solutions to

Rare beneficiaries

 Contact your Senator or Member of the House of Representatives to get involved with the Rare Disease Caucus…

• And to support efforts to help Rare Disease Beneficiaries access care in Medicare

CONCLUSION

THANK YOU

Med edica caid Morn

• rna A

A. . Murray, J JD

Senior V r Vic ice Pre President f for H r Health a and Dis isabilities First F Focu

• cus

Mo rna A. Murra y Se nio r VP fo r He a lth a nd Disa b ilitie s F irst F

• c us

F b 26 2018

RDLA Legislative Conference Navigating Medicaid

What is Medicaid

• Me dic a id wa s sig ne d into la w in 1965,

a lo ng with Me dic a re . I t is a se c tio n o f the So c ia l Se c urity Ac t – T itle XI X.

• Me dic a id is the la rg e st pub lic he a lth

pro g ra m fo r pe o ple with lo w inc o me – c o ve ring 1 in 5 Ame ric a ns (74 millio n).

• 4 ma in g ro ups o f b e ne fic ia rie s:
• I

nfa nts a nd c hildre n

• Pre g na nt wo me n, pa re nts, so me

a dults

• Pe o ple w/ disa b , c o mple x me d

ne e ds

How does Medicaid work?

• Me dic a id is a fe de ra l-sta te pa rtne rship.

All sta te s ha ve a Me dic a id pro g ra m tha t is a dministe re d b y e a c h sta te within c e rta in fe de ra l g uide line s.

• But sta te s c a n o ffe r a dditio na l o ptio na l

se rvic e s inc luding pre sc riptio n drug s, va rio us the ra pie s, de nta l, e ye g la sse s, e tc .

• Childre n’ s b e ne fits a re c o mpre he nsive –

E PSDT (E a rly a nd Pe rio dic Sc re e ning , Dia g no stic a nd T re a tme nt b e ne fit).

Who Pays for Medicaid?

• Bo th the fe de ra l g o ve rnme nt a nd the

sta te s pa y fo r Me dic a id. T he fe de ra l g o ve rnme nt re imb urse s sta te s a t a c e rta in %, fro m 50-77%, de pe nding o n sta te ’ s inc o me .

• Me dic a id spe nding inc re a se d 4% in

2016, to $566 b illio n.

• Me dic a id is a n “e ntitle me nt” pro g ra m,

i.e ., a nyo ne who me e ts re q uire me nts is e ntitle d to c a re a nd sta te s a re g ua ra nte e d pa yme nt.

Spending and Coverage

• Me dic a id spe nding inc re a se d 4% in

2016, to $566 b illio n.

• Me dic a id is a n “e ntitle me nt” pro g ra m,

i.e ., a nyo ne who me e ts re q uire me nts is e ntitle d to c a re a nd sta te s a re g ua ra nte e d pa yme nt.

• T

he Affo rda b le Ca re Ac t a llo we d sta te s to e xpa nd c o ve ra g e unde r Me dic a id, b e g inning in 2014. T he fe de ra l g o vt pa ys 100% o f the e xpa nsio n c o st, g o ing do wn to 90% in 2020

Medicaid Expansion

• 32 sta te s a nd DC ha ve e xpa nde d

Me dic a id unde r the ACA.

• T

his inc re a se s the inc o me thre sho ld to 138% o f the fe de ra l po ve rty le ve l ($28,676 fo r fa mily o f 3 in 2018).

• Also a llo ws fo r c o ve ra g e o f c hildle ss

a dults a nd o the r individua ls suc h a s tho se with c hro nic me nta l illne ss o r disa b ilitie s who do no t me e t fe de ra l de finitio ns o f disa b ility.

CHIP

• CHI

P wa s e na c te d in 1997 in a b ipa rtisa n Co ng re ss a nd sig ne d into la w b y Pre side nt Clinto n

• All sta te s ha ve a CHI

P pro g ra m

• CHI

P c o ve rs kids who a re no t inc o me - e lig ib le fo r Me dic a id

• CHI

P c o ve rs a lmo st nine millio n kids a nd pre g na nt wo me n

CHIP- works with Medicaid

• CHI

P wa s e na c te d in 1997 in a b ipa rtisa n Co ng re ss a nd sig ne d into la w b y Pre side nt Clinto n.

• All sta te s ha ve a CHI

P pro g ra m.

• CHI

P c o ve rs kids who a re no t inc o me - e lig ib le fo r Me dic a id, up to diffe re nt le ve ls in e a c h sta te .

• CHI

P c o ve rs a lmo st nine millio n kids a nd pre g na nt wo me n.

CHIP- works with Medicaid

• Afte r a lo t o f ne g o tia tio n, CHI

P wa s e xte nde d fo r 6 ye a rs o n Ja nua ry 22. T he n whe n the c o st o f CHI P wa s fo und to ha ve dro ppe d, it ma de se nse to e xte nd it fo r a to ta l o f 10 ye a rs – fina l b udg e t de a l sig ne d o n F e b rua ry 8.

• Bo th Me dic a id a nd CHI

P c o ve r pre ve ntive se rvic e s, pre sc riptio n drug s, the ra pie s fo r c hildre n a nd a dults with ra re dise a se s – c o ve ra g e c a n va ry in sta te s.

Specific Services

• Ne wb o rn Sc re e ning : As o ne e xa mple , the

ACA re q uire s sta te s to c o ve r the fe de ra l Re c o mme nde d Unifo rm Sc re e ning Pa ne l (RUSP) o f 31 c o re a nd 26 se c o nda ry ne wb o rn sc re e ning s (NBS)with no c o -insura nc e o r c o pa yme nt re q uire d. No t a ll sta te s ha ve imple me nte d this unifo rmly.

• Sc re e ning a nd pre ve ntio n a re re q uire d unde r

Me dic a id a nd CHI P a s we ll.

• T

he e xpa nsio n o f NBS c o ve ra g e a ffe c ts a b o ut 1.3 millio n o f 4 millio n a nnua l b irths, in a dditio n to a b o ut 2 millio n c o ve re d b y Me dic a id (Co stic h,

Julia , T he “I mpa c t o f the Affo rda b le Ca re Ac t o n F unding fo r Ne wb o rn Sc re e ning Se rvic e s,” 2016)

Legislative Threats to Medicaid

• T

hre a ts to Me dic a id b o th le g isla tive ly a nd a dministra tive ly with Me dic a id wa ive rs.

• L

a st ye a r, the re we re a tte mpts to re pe a l a nd re pla c e the ACA, like the Ame ric a n He a lth Ca re Ac t (Ho use ) a nd the Be tte r Ca re Re c o nc ilia tio n Ac t, whic h fa ile d in the Se na te . T he Gra ha m-Ca ssidy-He lle r-Jo hnso n pro po sa l is simila r – c ut Me dic a id funding b y hundre ds

• f b illio ns o f do lla rs a nd c ha ng e the o pe n

e ntitle me nt to a b lo c k g ra nt o r a pe r c a pita l fina nc ing fo rmula – b o th limit fe de ra l funding .

• T

he se e ffo rts ma y b e e spe c ia lly ha rmful to pe o ple with hig h c o st tre a tme nts, c hro nic c o nditio ns

Administrative Threats to Medicaid

• Sta te s a re a pplying fo r a nd so me ha ve

re c e ive d a ppro va l fo r Me dic a id Se c tio n 1115 wa ive rs.

• Se c tio n 1115 wa ive rs a re suppo se d to b e

“de mo nstra tio n” g ra nts to inc re a se a c c e ss o r b e tte r c a re unde r Me dic a id, no t limit a c c e ss.

• Wo rk re q uire me nts a re a mo ng the mo st

dra c o nia n me a sure s inc lude d in Me dic a id wa ive rs – a re c o ntra ry to the inte nt a nd princ iple o f the Me dic a id sta tute .

• Wa ive rs a lso po se thre a ts to pe o ple with

c hro nic a nd pre -e xisting c o nditio ns, hig h c o st tre a tme nts

What to Do?

• E

duc a te a nd Advo c a te !

• Ca ll, visit, write , sta y in to uc h with yo ur

me mb e rs o f Co ng re ss a nd a dvo c a c y g ro ups!

www.firstfo c us.ne t

Morna Murray E-mail: mornam@firstfocus.org Phone: 202-657-0679 www.firstfocus.org

Thank You!

@RareAdvocates #RareDC2018 Rare_advocates

3:45 45 -4: 4:30 30 pm Breakou kout t Session ions - Pick ck On One Tr Track ack A A: : Poli

• litical H

Hot

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• pics: R

Righ ight to T to Try ry – Is it a it a Solu Solution Atriu trium B Ballro llroom Tr Track ack B B: : Poli

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• t Topic
• pics: Sta

States’ R Righ ights to to Medi dical Marij rijuana Hemis isph phere re A A

Mo Modera derator Da David id F Farbe rber

FDA A Life S e Scien ences P Partn tner Ki King & & Sp Spal alding

Ri Rich char ard K Klei ein Sta Starl rlee C Cole

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Fo Form rmer P r Patie ient L Lia iais ison Dire Director Senio ior P Polic licy A Adv dvis isor Fo Food d and d Dru Drug Adm dmin inis istra ration Go Goldw ldwater I r Instit itute

Michael el B Bec ecker Lau aura M a McLinn Biotech Entrepreneur, Author Founding President Patient Expert Best Day Ever Foundation

Mar ark k Dan ant Board rd C Chair ir Every ryLif Life Fou

• undatio

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Partic articip ipate te to to with ith a a $50 A Amaz azon

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Gif ift t Card Card! Turn rn th them b bac ack in in at at th the re regist gistra ratio tion d desk sk.

Tu Tues esday, F Feb ebruar ary 27 27th

th  7:30 am – Lobby D

Day B ay Break eakfas ast

 9:00 am – Meeti

tings on

• n Capit

pitol Hill ill

 6:30 pm – Youth

th A Advoc

• cate

te M Meet- Up (Ag (Ages 1 s 13-25) 25) Wed ednes esday, F Feb ebruary 28t 28th

 12:00 pm – Rar

Rare e Disea ease Co Congressional Cau Caucu cus Brief efing



2:00 pm – Grou roup P Phot

• to on
• n Capit

pitol Ste Steps ps



5:00 pm – Rar Rare e Artist Recep Reception

50

Pres esen ented b by: y: Tu Tues esday, F Feb ebruar ary 27 27th

th

7: 7:00 00-8: 8:30am 30am Washin ington Cou

• urt

rt H Hote

• tel

525 525 New ew J Jer ersey ey Ave N e NW, W Was ashington, DC C 20001 20001

51

Washin ington Cou

• urt

rt H Hote

• tel

525 525 New ew J Jer ersey ey Ave N e NW

The closest Metro stops are Union Station and Judiciary Square, both on the red line.

52

It’s a 15 minute walk plus security between Senators and Representatives

REPRES ESEN ENTATIVES ES SENAT ATORS

54

Wednesday, February 28th 12:30-1:45pm Russell Senate Office Building, Room 325

Lu Lunch ch will b ill be p pro rovid ided! Th The Ra Rare re Dis isease Lif Lifecy cycl cle: Dia iagn gnosis is to Tre Treatment

Presented by:

55

Russell Senate Office Building Kennedy Caucus Room 325 2 Constitution Ave NE

The closest Metro stop is Union Station on the red line.

56

Wednesday, ay, F Februar ary 2 y 28th

th , imme

media diate tely ly f follow

• win

ing g the Caucus B Brie riefin ing on

• n th

the ste teps ps of

• f th

the U U.S.

• S. C

Capit pitol Pleas ease w wear ear yo your new ew scar carves!

57

Wednesday, ay, F Februar ary 2 28th 5-7pm Russell S ll Senate O Offic ice Build ildin ing Kennedy C Cau aucus R s Room Presen ented b ed by: Several of the artists who received an award in the 2017 Rare Artist contest will join us to discuss how they express their experience with rare disease in their artwork.

In addition to the Rare Artists displaying their work, we welcome special guest Rick Guidotti from Positive Exposure. He will be presenting photos and speaking about his efforts to change societal attitudes towards people living with genetic, physical, behavioral, or intellectual difference.

58

59

Ru Russel ell S Sen enat ate e Of Office B Building Ken ennedy Cau Caucu cus Ro Room 325 325 2 Constitu tituti tion

• n A

Avenue N NE

The closest Metro stop is Union Station on the red line.

60

The event is free to attend in-person or participate via livestream. The agenda and registration are available at https://ncats.nih.gov/rdd.

Thursd sday, y, M Mar arch 1 1st 8:30am am – 4pm Masur Auditorium, Building 10 Natio ional I l Instit itutes o

• f Healt

lth Bethesd sda, a, M MD

Thank Yo You!!!!

@RareAdvocates #RareDC2018 Rare_advocates