Navigating the JA world

Peter Chira, MD MS Nicole Carlson, PNP

Juvenile Arthritis National Conference 2012

The Journey

Your crew Your equipment Your map Your destination Your community Detours and

weathering the storms

Is this how you felt the first time you met us?

Your crew

Pediatric Rheumatology Division Teaching institutions: what does that mean? Different levels of trainees Attendings – MDs Board certified in Pediatrics and

Pediatric Rheumatology Fellows – MDs Board certified in Pediatrics and currently

being trained in Pediatric Rheumatology Residents (aka interns, housestaff) – MDs currently being

trained in Pediatrics Medical students – training to be medical doctors

Your crew

Nurse Practitioners/ Physician Assistant Nurse specialists Clinical nurse specialists/ nurse practitioners –

handle questions about patient care related information Research nurse/ research coordinator –

handles pediatric rheumatology study related information

Social Workers Administrative Associates Clinic staff

Where We Live Because many pediatric rheumatologists

also have teaching, research, and administrative responsibilities, we have two offices: CLINICAL and ACADEMIC We see patients admitted in the hospital

and in our medicine specialty clinic = CLINICAL

Our real homes are our administrative offices where we do research and deal with patient issues when not in clinic = ACADEMIC

All health-related questions should be directed to our academic offices, NOT our clinics

Remember- if we are in clinic seeing patients, this means we are not at our academic offices and often cannot answer calls until we return.

Also, some days we are not at clinic so just dropping by without calling probably does not work.

Your Medicine Family Tree

You and Your Child

Primary Physician

Pediatric Rheumatology Team

Physical Therapist/

Occupational Therapist

Ophthalmologist Laboratory/ Radiology Social Worker Pharmacist School Other

subspecialists

Primary Physician Roles

Please let us know your child’s PCP contact information and if you change providers.

We attempt to keep the primary care provider (PCP) up to date on your child’s care.

Please let us know if your child’s PCP is not getting our correspondences.

Primary Physician Roles

Continue to see your child’s PCP for primary care issues (well child checks, vaccinations, urgent care issues).

BUT, don’t hesitate to contact us for any questions about medications or illnesses.

Ancillary Services: Physical/Occupational Therapy Physical Therapy (PT): large

muscle groups, lower body, and conditioning

Occupational Therapy (OT): upper body, fine motor skills, activities of daily living

If you get a PT/OT referral for your child make sure you find a PT/OT that has some experience with: 1. Children 2. Chronic illnesses 3. Rheumatologic illnesses (i.e.

juvenile arthritis, dermatomyositis, lupus, etc.)

Ancillary Services: Physical/Occupational Therapy

Make sure your child feels comfortable working with the PT/OT to maximize therapy Home programs are valuable but only

work if your child does them Find a PT/OT that is closer to home

Ancillary Services: Pharmacy

Fill all of your child’s medicines at the same pharmacy To get refills, contact your pharmacy at least 5 days

before you run out and have them fax us a refill request Prior authorizations from insurance companies are

needed for some medicines- this can delay start of treatment

Tell us if a medicine is not covered on your insurance formulary- we can always change to another option if necessary

Find out if mail order pharmacies are cheaper with your insurance; Consider big box pharmacy programs (Walgreen’s, Target for inexpensive generics)

Often, injectable medications are administered under a different plan than your regular drug plans

Ancillary Services: Lab/Radiology

When the labs/x-rays are done at facilities other than ours: please make sure the lab/x-ray results are faxed to us. please have the lab phone and fax numbers available Ideally, bring any copies of outside x-rays for our review

at your clinic visit

PPO: cost of services can vary widely HMO: Please check with your PCP/insurance company

where preferred facilities are.

Ancillary Services: Ophthalmology

Be sure your child is being seen by ophthalmologist (MD) or a optometrist (OD) who has experience in looking for inflammation in the eye (uveitis).

If your child is old enough to sit still, an adult ophthalmologist can evaluate.

Make sure the ophthalmologist knows what medications your child is on (i.e. steroids, plaquenil)- this helps them know what to look for.

Have the eye doctor send us reports: our job is to work along with them!

Ancillary Services: Social Work

Social workers are problem solvers and can help in a variety of situations from school to insurance to psychological support references.

School Issues

Schools will accommodate for your child Extra time to walk to class,

extra set of books, extra time to take tests, etc

Individualized Education Program (IEP)

504 Plan Physical Education Adaptive PE

Other doctors

Often, we rely on other doctors to help follow your child’s condition, like kidney, heart, lung, or brain and behavioral specialists

We try to coordinate care and need your help to facilitate interactions by providing updated contact information of all your child’s doctors, especially if they are at other institutions

Your equipment

Dealing with insurance

Know Your Insurance Plan: Private

HMO Everything (or almost

everything) goes through your primary physician

Know your authorization status (can take up 1 week)

Make sure to find out where you can have labs/x-rays done

Prior authorizations needed for certain medications

PPO Make sure we are a

“preferred provider” Most labs/x-rays can be

done at our facility without extra charge

Watch out for higher co-pays

Prior authorizations needed for certain medications

Know Your Insurance Plan: Public

Medicaid Insurance coverage and

benefits varies from state to state

Programs administration can vary from county to county (HMO/managed care versus PPO style)

Health Savings Accounts Often pay for services

until you have met deductible (typically high)

Funds collected are tax exempt

More on Insurance (the past)

Before changing insurance plans, make sure that a pre-existing condition is covered

Be careful of out of pocket costs (high co-pays for visits and medications)

Consider inquiring about a case manager in your insurance company for your child to help coordinate care

Update your insurance information at every clinic visit

For older teens and young adults- know that they can be covered under parents’ insurance if they are attending school full-time

Impact of the New Health Care Law on Insurance: Obamacare Pre-existing conditions such as JIA/JRA cannot

cause denial of coverage and premiums cannot be higher based on condition www.pcip.gov

No longer can coverage be capped, nor can they drop coverage if there is a mistake on your application when you are sick

For older teens and young adults can now be covered until age 26 under parents’ insurance regardless of school status

Preventive services such as eye exams and immunizations should be covered without a copay for the visit

Special Insurance Information

Previously known as crippled children’s services State programs that covers the treatment and

care of children with certain physical and chronic health conditions and diseases, including juvenile arthritis. Can authorize and pay for specific medical

services and equipment related to the management and care of that disorder Doctor services, hospital/surgical care, PT, OT, labs,

x-rays, orthopedic appliances, and medical equipment.

Title V statute to State Programs for Children with Special Health Care Needs (CSHCN) Each state has a different name to the

program Coverage up to age 21 Services provided vary by state, so if you

move please be aware of differences This is a federally mandated program

Title V: Children with Special Health Care Needs https://perfdata.hrsa.gov/mchb/TVISRepor

ts/ContactInfo/StateContactSearch.aspx Illinois Division of Specialized Care for Children (DSCC) Core

Program http://internet.dscc.uic.edu/dsccroot/core_prog.asp

Indiana Children's Special Health Care Services (CSHCS) http://www.in.gov/isdh/19613.htm

Missouri Children and Youth with Special Health Care Needs Program (CYSHCN) http://health.mo.gov/living/families/shcn/cyshcn.php

Title V: Children with Special Health Care Needs https://perfdata.hrsa.gov/mchb/TVISRepor

ts/ContactInfo/StateContactSearch.aspx Iowa Child Health Specialty Clinics http://www.chsciowa.org/

Kansas Children and Youth with Special Health Care Need http://www.kdheks.gov/cyshcn/index.html

Nebraska Department of Health and Human Services http://dhhs.ne.gov/publichealth/Pages/lifespanhealth_mchbg.aspx

Pharmaceutical company- assistance programs Examples Enbrel Support 1-888-4ENBREL (1-888-436-

2735) or http://www.enbrel.com/pay-for-ENBREL.jspx Humira Protection plan 1.800.4HUMIRA or

http://www.humira.com/global/financial-assistance.aspx Remicade- Remistart 1-888-ACCESS1 (1-888-

222-3771) or http://www.remistart.com/

Your Map

Diagnosis

Treatment

Remission

Medical Information

Where do we get our information? Peer reviewed journals (Arthritis and

Rheumatism, Journal of Rheumatology, Pediatrics, New England Journal of Medicine, JAMA, Journal of Immunology)

Conferences where up to date information is distributed though lectures and posters

Textbooks (not as up to date)

How to search for Medical Information

Textbooks – sometimes outdated Medical journals – sometimes difficult to

interpret (even for us!) Internet – vast wealth of information (good

and bad) Sample search

Web search Guidelines

Look for reputable sources NIAMS/NIH Medical Centers Arthritis Foundation (or similar large groups)

Look for list of authors/contributors to the website Make sure MD or equivalent (preferably pediatric

rheumatology) Make sure updated in a timely manner

Who is reputable and reliable?

All national medical groups have websites that list their members American College of Rheumatology American Academy of Pediatrics

You can search the website to make sure they are members in good standing Since our subspecialty is small, you can

ask us as well

Interpreting Medical Literature

There are different ways medical information and data is presented to us: For testing medications, clinical trials are used The most unbiased type of clinical trials are the

randomized double blinded placebo controlled trial (gold standard)

Patient group

Drug

Placebo (sugar pill)

Watch how they did

Watch how they did

Unblind and analyze who did

better

Interpreting Medical Literature

When looking at medical literature: Be sure to identify what type of study they used. What the target population was? How many people were being tested? Be aware that statistics can make conclusions seem

more significant that they really are. Also, know that negative studies are often under-

reported in the literature- so just because there is nothing in the literature, it does not mean a study has not been done!

Your Destination

Inactive Disease and Remission

Goals of treatment are to achieve inactive disease (no signs of inflammation, joint swelling, or damage) and maintain it for at least 6 months to then call it a remission

We then strive to take away medicines to see it that remission continues long term

Additionally, we strive to make sure that pain is controlled and that the quality of life of your child and you are optimal with treatment and management

Your Community

Find a support system

Facing arthritis is challenging and how you, your child and your family deal and cope with it are very important issues

Resources such as the Arthritis Foundation can hook you up and meet others facing the same issues, whether on a local or national level

Join the JA Alliance to help others understand childhood arthritis http://www.arthritis.org/juvenile-arthritis-alliance.php

Ask your rheumatologists for other families to speak with about the diagnosis and treatments

Social media and networking

Bulletin Boards/ Facebook groups are very useful as a source of support and communication in a community Every person is different and one person’s

perspective may not be reliable Take “cure-alls” with a grain of salt Be careful of alternative or miracle

therapies i.e. herbals are monitored by the FDA but under

the Food section

Advocacy

You and your family can become ARTHRITIS AMBASSADORS to let your elected officials understand what needs to get done to improve the care of kids with arthritis and related disorders http://www.arthritis.org/arthritis-ambassadors.php

Weathering the storms: Flares

We always hope that children reach remission and never have a flare Flares do happen making it important to

still follow-up with your regular doctor and rheumatologist periodically Underplaying symptoms or forgetting how the

arthritis originally presented is not uncommon- always feel free to contact your rheumatologist’s office if something does not seem right

Weathering the storms: Difficult to control disease Escalating medications can be frustrating and

scary, especially when trying newer medications Keeping your child moving and active is

ultimately the goal: we all need to keep that in mind especially when weighing risk and benefits of treatment/ management

Saying goodbye

Unless you are in a practice with a physician trained in pediatric and adult rheumatology, likely your child will at sometime will need to say goodbye to us Preparation for this transition will take

years- start early to ready yourself and your child for this change, which even when it runs smoothly can be very difficult and emotional

Bottom Line

Always advocate for your child Try to organize a medical notebook for

your child Be careful of what people say and what

you read from bulletin boards, internet sites, and magazines Whenever you have questions, please

don’t hesitate to ask. The only bad question is the one that WASN’T asked.