Overcoming Hurdles Insurance, Scripts, and Specialty Pharmacy - Sponsored by: TSC Alliance
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Overcoming Hurdles
Insurance, Scripts, and Specialty Pharmacy
ENTER
Sponsored by:
©2021 Greenwich Biosciences, Inc. All rights reserved. EPX-17440-0721
Welcome to the TSC Alliance Webinar Presentation!
Introducing... ENGAGE
LEARN
Julie Scroggins About this tool
Community Programs Manager, West This tool is intended to help you overcome potential hurdles that you may find on
TSC Alliance
your tuberous sclerosis complex (TSC) journey.
Here you will find information about:
• Drug therapies to treat the specific symptoms that a patient with TSC
may experience
• Common health insurance terms
• Payerorganizations—howtheymakecoveragedecisionsandusefultermstohelp
Ashley Pounders you understand the payer coverage decision-making process
MSN, FNP-C
• Specialty pharmacies—how your prescription gets filled by them and potential
Director, Medical Affairs,
TSC Alliance resources if you cannot afford your prescription
• How the TSC Alliance can help you along your way
• Tips to help you navigate the healthcare system through the transition from
childhood to adulthood
LET’S GET STARTED
Jeff Krol
Market Access and
Payer Strategy Expert
Listen to the
2021 eWebinar
Series. 2
Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
Click on icon 1 below to learn more and begin the journey
LEARN
Hurdle
5
Unsatisfied
Refractory, AED
Roller Coaster
Decision Transition to
Planning Adulthood
2 4 6 7
Hurdle
IS/Epilepsy Syndrome Specialty
Diagnosis Diagnosis Pharmacy
1 3
Neurologists, Transition to
Epileptologists, Adulthood
Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
AED = anti-epileptic drug; IS = infantile spasms; TSC = tuberous sclerosis complex. 3
Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
Click on icon 2 below to learn more
LEARN
Hurdle
5
Unsatisfied
Refractory, AED
Roller Coaster
Decision Transition to
Planning Adulthood
2 4 6 7
Hurdle
IS/Epilepsy Syndrome Specialty
Diagnosis Diagnosis Pharmacy
1 3
Neurologists, Transition to
Epileptologists, Adulthood
Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
4
Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
Click on icon 3 below to learn more
LEARN
Hurdle
5
Unsatisfied
Refractory, AED
Roller Coaster
Decision Transition to
Planning Adulthood
4 6 7
Initial diagnosis of
TSC may be done by a
Hurdle
IS/Epilepsy Syndrome specialist.
Specialty
Diagnosis Diagnosis Pharmacy
1 3
Neurologists, Transition to
Epileptologists, Adulthood
Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
4
Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
Click on icon 4 below to learn more
LEARN
Hurdle
5
Common Jargon Unsatisfied
Cost Sharing
Refractory, AED • Deductible
Roller Coaster
• Co-insurance
Decision Transition to
• Copay Planning Adulthood
2 4
• Out of pocket
6 7
• Out of network
Healthcare Services
• Pharmacy Benefit Manager
Hurdle (PBM)
IS/Epilepsy Syndrome
Diagnosis
•Specialty
Health plan
Diagnosis Pharmacy
• Vertical integration
• Specialist consult
1 • Genetic testing
Pharmacy
• Formulary & Tier
• Electronic Rx
Neurologists, Transition to
Epileptologists,
• Side effects Adulthood
Multidisciplinary Rx = prescription.
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
4Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
Click on icon 5 below to learn more
LEARN
Hurdle
5
Unsatisfied
Refractory, AED
After diagnosis, some
Roller Coaster individuals may be
prescribed drugs that Decision
Planning
Transition to
Adulthood
2 typically can be filled by 7
a retail pharmacy, such
as topical skin treatment,
depending on theHurdleinitial
IS/Epilepsy
Diagnosis
Syndrome
Diagnosis
symptoms. Others may
Specialty
Pharmacy
be using specialty
products, such as
1 3 vigabatrin for infantile
spasms, right away.
Neurologists, Transition to
Epileptologists, Adulthood
Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
4Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
LEARN
Hurdle
Unsatisfied
Refractory, AED
Patients may face
Roller Coaster challenges getting access
to their medication. Decision
Planning
Transition to
Adulthood
2 4 Health plans must first 7
approve the prescription.
Treatment may need to
be modified toHurdle
find the
IS/Epilepsy
Diagnosis
Syndrome
Diagnosis
optimal therapy, requiring
Specialty
Pharmacy
additional approval from
the health plan.
1 3
Click to learn about
Payer Organizations
Neurologists, Transition to
Epileptologists, Adulthood
Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
4Payer Organizations
Integrated Payer Organizations
Listen to the podcast
ENGAGE
on Overcoming Hurdles
with Health Plans and
Specialty Pharmacies.
LEARN
All 5 of the top specialty pharmacies are fully or partially owned by one
of the largest PBMs and vertically integrated into large organizations
Insurer
PBM
Specialty
Pharmacy
Provider
Services
All trademarks and registered trademarks are the property of their respective owners.
6Who Makes Coverage Decisions?
Listen to the podcast
ENGAGE
on Overcoming Hurdles
with Health Plans and
Specialty Pharmacies.
LEARN
The decision of what drugs are covered by a plan is
made by a Pharmacy & Therapeutics (P&T) Committee
Responsibilities include:
P&T Committee
Formulary Medication Medication Drug therapy
Medication use Utilization
system selection and safety guidelines Education
evaluation management
maintenance review evaluation
The P&T Committee is made up Representing specialties such as: The P&T Committee:
of: • Immunology • Determines formulary and utilization
• Physicians (Medical Directors) management criteria
• Oncology
• Pharmacists • Meets several times annually
• Dermatology
• Nurses • Decisions are then taken downstream
• Infectious disease
to health plans, employer groups, and
• Neurology members
7How Are Decisions Made?
Listen to the podcast
ENGAGE
on Overcoming Hurdles
with Health Plans and
Specialty Pharmacies.
LEARN
Review Clinical Data Review Financial Apply Management
• FDA label Impact Controls
• Burden of illness • Specialty or retail
• Published data
(including indirect and pharmacy
• Clinical guidelines direct healthcare costs, • Tier/out-of-pocket costs
• Key opinion leaders hospitalizations, ER
visits, etc) • Utilization management
criteria
• Unit cost
• Discounts and rebates
from manufacturers
ER = emergency room; FDA = US Food and Drug Administration. 8Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
Click on icon 6 below to learn more
LEARN
Hurdle
5
Unsatisfied
Refractory, AED
Roller Coaster
Decision Transition to
Planning Adulthood
2 4 6 7
Hurdle
IS/Epilepsy Syndrome Specialty
Diagnosis Diagnosis Pharmacy
1 3
Neurologists, Transition to
Epileptologists, Adulthood
Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
9Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
LEARN
Hurdle
5
As individuals and/ Unsatisfied
or caregivers move
through changing Refractory, AED
needs, many will be Roller Coaster
prescribed a specialty Decision
Planning
Transition to
Adulthood
drug that will need2 to 4 7
be filled at a specialty
pharmacy.
Hurdle
Click here IS/Epilepsy
to learn Syndrome Specialty
Diagnosis
more about Specialty Diagnosis Pharmacy
Pharmacies
1 3
Neurologists, Transition to
Epileptologists, Adulthood
Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
9Listen to the podcast
on Overcoming Hurdles
What Is a Specialty ENGAGE
Pharmacy Provider (SPP)?
with Health Plans and
Specialty Pharmacies.
LEARN
A specialty pharmacy provider is a licensed and
accredited pharmacy that provides medications
for people with serious health conditions requiring
complex therapies, such as cancer, hepatitis,
rheumatoid arthritis, HIV/AIDS, multiple sclerosis,
cystic fibrosis, organ transplantation, hemophilia
and other bleeding disorders, and rare diseases.1
Specialty pharmacies are not like typical retail
pharmacies and are usually not open to the public
to walk in. Medications from a specialty pharmacy
are shipped or delivered by a delivery service.
It’s important to know that ordering and refilling
specialty medications takes additional time, which
should be accounted for when refilling.
Reference: 1. National Association of Specialty Pharmacy. Accessed January 12, 2021. https://naspnet.org/wp-content/uploads/2019/08/What-Is-Specialty-Pharmacy-090718.pdf/ 10Listen to the podcast Why Do I Need to Use a ENGAGE
Specialty Pharmacy?
on Overcoming Hurdles
with Health Plans and
Specialty Pharmacies.
LEARN
Health plans and Hurdles: Insights:
PBMs use a specialty • Providers are unaware Locating your SPP network
pharmacy to better of SPP requirement and specialty drugs
manage complex
• Individuals don’t know • Contact your health
chronic conditions which drugs require plan or PBM using your
often treated with SPP dispensing healthcare insurance
costly medications. card to determine the
• Individuals don’t know
The decision to require which SPP to use or preferred SPP
a medication be how to find it • Check your plan’s online
dispensed through a • Specialty pharmacies formulary through the
specialty pharmacy is are not like retail, you patient portal
impacted by both the typically cannot just • Manufacturer HUB for
manufacturer and the walk into one prescribed drug can
health plan and/ often provide support
or PBM.
11Listen to the podcast How Does a Specialty Pharmacy ENGAGE
Prescription Get Filled?
on Overcoming Hurdles
with Health Plans and
Specialty Pharmacies.
LEARN
Prescriptions are typically Hurdles:
transmitted electronically • If the prescription is sent to a retail
(electronic Rx) from a doctor’s pharmacy that is unable to fill it
electronic medical record to the
• If the prescription requires a prior
pharmacy directly. authorization or some form of utilization
SPP reaches out to the individual or management
caregiver through contact information
provided on the Rx. First contact usually: • If there is significant financial impact to
the individual (ie, out-of-pocket cost)
• Establishes disease/condition
• Walks through directions and side effects
• Provides any training needed to give the drug
• Talks about further contact from the SPP
as follow-up calls
• Sets up delivery date and reimbursement
with individual or caregiver
12Listen to the podcast What Happens When My Prescription ENGAGE
Is Sent to the Wrong Pharmacy?
on Overcoming Hurdles
with Health Plans and
Specialty Pharmacies.
LEARN
Sent to retail pharmacy: Insights:
• Retail pharmacy gets notified that Rx • Ask your retail pharmacy if the payer
must be filled at SPP but doesn’t always noted who your specialty pharmacy
tell members which SPP is in their provider is
network • Find out which SPP is allowed to fill your
• Electronic Rx’s can get put on hold and prescription
don’t get transferred to the appropriate • Contact your provider office and let them
SPP know the Rx must be filled at an SPP and
• Individual often has to contact the where they should resend the Rx
provider’s office and tell them where to • You may also contact the SPP identified
resend the Rx and let them know which retail pharmacy
• Individual must find out which SPP is held the original Rx and have them
in their network and let the provider’s transfer it into the SPP. This can be quicker
office know where the Rx must be sent than involving the provider’s office
13Listen to the podcast What Does It Mean When My Prescription ENGAGE
Requires a Prior Authorization?
on Overcoming Hurdles
with Health Plans and
Specialty Pharmacies.
LEARN
This means there are some things your Insights:
health insurance company wants to • Some drugs also include reauthorization criteria,
confirm before approving the requested which mean conditions that must be met for
drug, such as: individuals to continue therapy
• Individual’s age • Previous therapy • Your SPP will notify your provider that a PA is required
• Diagnosis • Safety concerns and often helps the provider fill out the paperwork
• Prescriber (specialist) • Make sure your provider has a full history of
medications previously tried
• PA can also include requirements to try another
• Your SPP will notify you (most often) when your
product before receiving the requested agent (step
PA has been approved. If it has been denied, TSC
therapy) or limit the quantity an individual may
Alliance has resources that can help with appeals
receive (quantity limit)
• Your SPP will call to set up payment and delivery
• If approved, an initial authorization period is
assigned to the approval (usually 6-12 months). If • If it has been more than 72 hours, contact your SPP
denied, an individual may appeal and your provider’s office for the status of the
PA request
14Listen to the podcast What If I Cannot Afford ENGAGE
My Prescription?
on Overcoming Hurdles
with Health Plans and
Specialty Pharmacies.
LEARN
How much you owe for your Insights:
prescription depends on many • The SPP can help you locate financial
things: assistance
• Type of health plan (high deductible) • HUB by the pharmaceutical company for
• Deductible the prescribed drug can also help
• Formulary tier Types of financial assistance:
• Cost of your medication • Copay/discount card (commercial
members)
• Patient assistance program (income based)
– SPP/HUB can assist with completion of
paperwork
• Foundation’s Medicare members may
need to ask SPP if there are any programs
available for the prescribed drug
15Your Team and the
Transition to Adulthood
Ashley Pounders Julie Scroggins
MSN, FNP-C Community Programs
Director, Medical Affairs, Manager, West
TSC Alliance TSC AllianceListen to the podcast
on Overcoming Hurdles
About the TSC Alliance
with Health Plans and
Specialty Pharmacies.
The TSC Alliance was founded in 1974 and is an internationally ENGAGE
recognized nonprofit organization dedicated to finding a cure
for TSC while improving the lives of those affected1 LEARN
Goals
Accelerate Improve Access Support and Educate and Drug Therapy Build and
Research and Quality of Empower Mobilize to Guidelines Strengthen
Care Constituents Increase Organization
Investment
Reference:1.PRNewswire.July31,2020.AccessedJanuary12,2021.https://www.prnewswire.com/news-releases/tuberous-sclerosis-alliance-lauds-fda-approval-of-epidiolex-to-treat-seizures-
in-people-with-tuberous-sclerosis-complex-301104240.html 17Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
Click on icon 7 below to learn more
LEARN
Hurdle
5
Unsatisfied
Refractory, AED
Roller Coaster
Decision Transition to
Planning Adulthood
2 4 6 77
Hurdle
IS/Epilepsy Syndrome Specialty
Diagnosis Diagnosis Pharmacy
1 3
Neurologists, Transition to
Epileptologists, Adulthood
Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
18Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
Click here to see insights
LEARN
Hurdle
5
Unsatisfied
Refractory, AED
Roller Coaster
What will happen Decision Transition to
as my child ages? Planning Adulthood
Will our new neuro The transition phase
be a good fit? should start around the
IS/Epilepsy preteen
Syndrome
years.Specialty
Start having Hurdle
Will I be able to
Diagnosis
conversations
Diagnosis with your
Pharmacy
manage my child’s current healthcare team
medications? regarding the process in your
state regarding guardianship
or conservatorship. This will
require legal documentation. Transition to
Neurologists,
Epileptologists, Adulthood
Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
18Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
Click here to read the key takeaways from this tool
LEARN
Hurdle
5
Unsatisfied
Refractory, AED
Roller Coaster
Insights: Decision
Planning
Transition to
Adulthood
2 • File appropriate
4 paperwork 7
6
with pharmacy, health
plan, and PBM to be able to
manage child’s medication as
Hurdle
IS/Epilepsy they approach teenage years
Syndrome Specialty
Diagnosis Diagnosis Pharmacy
• Work with a pediatric
neurologist to align on an
1 adult provider
3 and begin
forming the relationship
as child approaches their
teenage years
Neurologists, Transition to
Epileptologists, Adulthood
Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
18Listen to the podcast
on Overcoming Hurdles
Key Takeaways ENGAGE
with Health Plans and
Specialty Pharmacies.
Click here to return to beginning
LEARN
• Health plans and PBMs make coverage decisions through committees comprised of
practicing physicians, pharmacists, and nurses
• Specialty pharmacies are used to maximize clinical outcomes in complex chronic conditions1
• Be PROACTIVE in understanding your pharmacy benefits and communicating with providers
• Know which drugs require SPP dispensing and what your specialty pharmacy is
• Individuals should track when authorizations will expire and keep enough drug on hand
• SPPs can help with affordability through various programs. Ask about available programs
• As adulthood approaches, supply appropriate documents in preteen years to reduce
disruption
• The TSC Alliance has numerous resources available for members. Contact TSC Alliance
Support Navigators with any questions or concerns
Reference: 1. National Association of Specialty Pharmacy. Accessed January 12, 2021. https://naspnet.org/wp-content/uploads/2019/08/What-Is-Specialty-Pharmacy-090718.pdf 19Welcome to the TS Alliance Webinar Presentation!
Introducing... ENGAGE
About this tool LEARN
CurrentJulie
TSC Alliance Partnerships
Scroggins That Offer Resources
Vit et molum rero blab ius, int vel ipsum nullatus. Cusdaepta dendus,
Community Programs seque alibusdae vollor sit exceatus etur sum quunt exersperum nonsed
Manager, West
Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA): https://www.alliancegenda.org/
et, omnihit atemolore nonsedis niminverum, im expliqu odiassunt eate-
cerchit audanda vendist ommo magnis ut maximinimin explique nobis-
American Thoracic Society Public Advisory Roundtable (ATS PAR): https://www.thoracic.org/patients/par/
sit voleni dolorro tem abo. Catur? Quide perspiciur, simi, verate prepro
The Arc: https://thearc.org/ eiciani dolorit emporer ferist ipsapis alit fugiatemo voluptati sae. Git lam
de explibu sapitium vende alicitatus est et duciant atiatat esciumquas
Child Neurology Foundation: https://www.childneurologyfoundation.org/
diam, qui dolupic iduciet eri vollatem volor aut aut dolestenimil iur andae
illaborporum res volorro etur? Beatiuntia doles mo idit opti omni re cus
Epilepsy Leadership Council: https://www.epilepsyleadershipcouncil.org/
doles essimil lenist, quidele ssuntur?
Ashley Pounders
Global Genes: https://globalgenes.org/
MSN, FNP-C Ovid quia quuntiur, con ne et, omnistin nisquiate sum estium ipsa dolor-
Director,Infantile
Medical Affairs, poreium quia et aut fuga. Apiendi gendissi corum simus ea nonsendit,
Spasms Action Network (ISAN): https://infantilespasms.org/
Tuberous Sclerosis Alliance ipis cus, ullat.
National Organization for Rare Disorders (NORD): https://rarediseases.org
Rare Epilepsy Network: https://www.rareepilepsynetwork.org/
LETS GET STARTED
Seizure Action Plan (SAP) Coalition: https://www.seizureactionplans.org/
Jeff Krol
VP, Market Access & Payer Strategy
Greenwich Biosciences
Listen to the
2021 eWebinar
Series
2Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
with Health Plans and
Specialty Pharmacies.
LEARN
Hurdle
5
TSC symptoms can present differently Unsatisfied in every
individual
Refractory, AED
with TSC resulting in many drug therapies
Roller Coaster
Brain Kidneys Skin Lungs Decision Heart
Transition to
Planning Adulthood
Hurdle
IS/Epilepsy Syndrome Specialty
Diagnosis
• Anti-epileptic drugs Diagnosis
• Blood pressure Pharmacy
• Topicaltreatmentsfor • Immunotherapies for • Agents that reduce
(AEDs) for seizures 1
agents 4
skin conditions 5
lung disease6 fluid buildup7
• Immunotherapies • Low-protein diets4 • Blood pressure
(mTOR inhibitors)2,3 agents7
• Immunotherapies
(mTOR inhibitors)2,3
mTOR = mechanistic target of rapamycin.
References: 1. TSC Alliance. Updated August 2016. Accessed April 3, 2020. https://www.tsalliance.org/about-tsc/signs-and-symptoms-of-tsc/brain-and-neurological-function/epilepsy-and-seizure-disorders/
Neurologists,
2. MacKeigan JP, et al. J Neurooncol. 2015;17(12):1550-1559. doi.10.1093/neuonc/nov152 Transition
3. Zou Z, et al. Cell Biosci. 2020;10:31. doi: 10.1186/s13578-020-00396-1 4. Massachusetts General Hospital. Accessed to
January 12, 2021.
https://www.massgeneral.org/neurology/tsc/patient-education/how-tsc-affects-kidneys 5.TSCAlliance.UpdatedDecember2013.AccessedNovember14,2019.https://www.tsalliance.org/about-tsc/signs-and-symptoms-of-
Epileptologists, Adulthood
tsc/skin/ 6. TSC Alliance. Updated November 2013. Accessed January 13, 2021. https://www.tsalliance.org/about-tsc/signs-and-symptoms-of-tsc/lungs 7. Hinton RB, et al. J Am Heart Assoc. 2014;3(6):e001493. doi: 10.1161/
JAHA.114.001493 Multidisciplinary
Early Development Health Retail Specialty Insurance Complete Adulthood and
& Symptom Onset Plan Pharmacy Specialists Pharmacy Providers Care Team the Future
Initial Development New Players Advanced Interactions Your Team
AED = anti-epileptic drug; IS = infantile spasms; TSC = tuberous sclerosis complex. 3Listen to the podcast
on Overcoming Hurdles
Potential Hurdles in the TSC Journey ENGAGE
Common Jargon
with Health Plans and
Specialty Pharmacies.
LEARN
Cost Sharing Hurdle
Deductible The amount of money you must pay before insurance will pay a claim1
Co-insurance Your share against a claim2
Copay The amount you owe after insurance has paid3 Unsatisfied Common Jargon
Out of pocket Money paid from your reserves4
Out of network Cost Sharing
An HCP that doesn’t have a contract with your health plan to provide service
Refractory, AED
4
Roller Coaster • Deductible
Healthcare Services • Co-insurance Decision Transition to
• Copay prescription drug benefits onPlanning
A third-party organization that administers
Adulthood
behalf of health
Pharmacy Benefit Manager
plans5 • Out of pocket
A type of insurance coverage that pays
• Outfor
ofmedical
networkand surgical expenses incurred by the
Health plan
insured4
Vertical integration Health
The combination of two or more stages Carenormally
of production Servicesoperated by separate firms,
such as when health plans acquire•pharmacy
Pharmacybenefit managers
Benefit Manageror
Hurdle specialty pharmacies6
(PBM)
IS/Epilepsy Syndrome Specialty
Specialist consult
Diagnosis Aconversation with a doctorthat Pharmacy
Diagnosis specializes
• Healthinplan
a disease orbody system, such as a neurologist4
Type of medical test that identifies•changes
Specialist
in consult
chromosomes, genes, or proteins and can
Genetic testing
confirm or rule out suspected genetic conditions
• Genetic
7
testing
Pharmacy Pharmacy
A formulary is a list of prescription•drugs
Formulary & Tier
covered by your health plan4
Formulary & Tier A tier is a category within the formulary (usuallyRx
• Electronic by drug type) that further divides drugs by
cost 4
Transition to
Neurologists, • Side effects
Electronic Rx A prescription entered into a computer that is automatically sent to a pharmacy
Epileptologists,
8 Adulthood
Multidisciplinary
Side effects An unwanted effect from a drug that comes along with the intended effect4
References:1.HealthCare.gov.Deductible.AccessedJanuary12,2021.https://www.healthcare.gov/glossary/deductible/2. HealthCare.gov.Coinsurance.AccessedJanuary12,2021.https://www.healthcare.gov/glossary/co-insurance/3.HealthCare.
gov. Copayment.Accessed January 12, 2021. https://www.healthcare.gov/glossary/co-payment/4. Centers forMedicare and Medicaid Services. Updated May 14, 2006.Accessed January 12, 2021. https://www.cms.gov/apps/glossary/default.
asp?Letter=O&Language=English5.TheCommonwealthFund.April22,2019.AccessedJanuary12,2021.https://www.commonwealthfund.org/publications/explainer/2019/apr/pharmacy-benefit-managers-and-their-role-drug-spending6.
HannaJ.PharmacyTimes.AccessedJanuary26,2021.https://www.pharmacytimes.com/news/vertical-integration-in-health-care-the-next-stairway-to-heaven7.NationalLibraryofMedicine.MedlinePlus.Genetics.AccessedJuly14,2021.https://
Initial Development New Players Advanced Interactions
medlineplus.gov/genetics/understanding/testing/genetictesting 8. HealthIT.gov. Updated September 10, 2019. Accessed January 12, 2021. https://www.healthit.gov/faq/what-electronic-prescribing
Your Team
41How Are Decisions Made?
Listen to the podcast
ENGAGE
on Overcoming Hurdles
with Health Plans and
Specialty Pharmacies.
LEARN
Utilization Management Types
Approval from a health plan that may be required before a service orprescription is covered by
Prior Authorization (PA)
a health plan1
Type of prior authorization that requires use of the most preferred drug therapy before
Step Therapy
allowing other therapies2
Quantity Limit Limit on the amount of a drug per duration of time (eg, 30 pills per 30 days)3
A set of guidelines or requirements that need to be met for medical services, procedures,
Medical Policy
devices, and drugs before coverage is provided4
Out of Network An HCP that doesn’t have a contract with your health plan to provide service5
General Individual
Review Clinical Data Cost Review
ShareFinancial Apply Management
• FDA
Tier 1 label
Impact Controls
Prescription drug tier with the lowest-cost tier of prescription drugs, majority are generic 6,7
• Burden of illness • Specialty or retail
• Published data Prescription drugtierwith medium-cost
Tier 2 6,7 (including indirect and drugs,mostaregenericpharmacy
withsomebrand-namedrugs
• Clinical guidelines direct healthcare costs, • Tier/out of
Prescriptiondrugtierwithhigher-costdrugs,themajorityarebrand-name pocket
drugs costs
andsome are
Tier
• Key3 opinion leaders hospitalizations,
specialty drugs 6,7 ER
visits, etc.) • Utilization management
Tier 4 or Specialty Prescription drug tier with the highest-cost drugs, majority criteria
are specialty drugs 6,7
• Unit cost
Out of Network An HCP that doesn’t have a contract with your health plan to provide service5
• Discounts and rebates
from manufacturers
References: 1. HealthCare.gov. Prior authorization. Accessed January 12, 2021. https://www.healthcare.gov/glossary/prior-authorization/ 2. Centers for Medicare and Medicaid Services. August 7, 2018. Accessed January 12, 2021.
https://www.cms.gov/newsroom/fact-sheets/medicare-advantage-prior-authorization-and-step-therapy-part-b-drugs 3. Medicare Interactive.org. Accessed January 12, 2021. https://www.medicareinteractive.org/glossary/
quantity-limit 4. Wellmark. Accessed January 12, 2021. https://www.wellmark.com/Provider/MedPoliciesAndAuthorizations/MedicalPolicies/MedicalPolicies.aspx 5. Blue Cross and Blue Shield of Illinois. 2021. Accessed July 13, 2021.
https://www.bcbsil.com/insurance-basics/understanding-health-insurance/glossary#O 6. Blue Cross Blue Shield of North Carolina. 2021. Accessed January 12, 2021. https://www.bluecrossnc.com/understanding-insurance/how-
drug-benefits-work/copayment-tier-definitions#:~:text=Copayment%20Definitions%20for%20the%20Four,some%20brand%2Dname%20prescription%20drugs 7. Blue Cross Blue Shield Blue Care Network of Michigan. Updated April
27, 2020. Accessed January 12, 2021. https://www.bcbsm.com/medicare/help/understanding-plans/pharmacy-prescription-drugs/tiers.html
8Listen to the podcast
on Overcoming Hurdles
About the TSC Alliance
with Health Plans and
Specialty Pharmacies.
The TSC Alliance was founded in 1974 and is an internationally ENGAGE
recognized nonprofit organization dedicated to finding a cure
for TSC while improving the lives of those affected1 LEARN
Current TSC Alliance Partnerships That Offer Resources
Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA): https://www.alliancegenda.org/
American Thoracic Society Public Advisory Roundtable (ATS PAR): https://www.thoracic.org/patients/par/
The Arc: https://thearc.org/
Child Neurology Foundation: https://www.childneurologyfoundation.org/
Epilepsy Leadership Council: https://www.epilepsyleadershipcouncil.org/
Goals
Global Genes: https://globalgenes.org/
Accelerate Improve Access Support and Educate and Drug Therapy Build and
Research
Infantile and
Spasms Action Quality(ISAN):
Network of Empower Mobilize to
https://infantilespasms.org/ Guidelines Strengthen
Care Constituents Increase Organization
Investment
National Organization for Rare Disorders (NORD): https://rarediseases.org
Rare Epilepsy Network: https://www.rareepilepsynetwork.org/
Seizure Action Plan (SAP) Coalition: https://www.seizureactionplans.org/
Reference: 1. PRNewswire. July 31, 2020. Accessed January 12, 2021. https://www.prnewswire.com/news-releases/tuberous-sclerosis-alliance-lauds-fda-approval-of-epidiolex-
to-treat-seizures-in-people-with-tuberous-sclerosis-complex-301104240.html 17You can also read
