Navigating JA World by Peter Chira, MD, MS; and Nicole Carlson, PNP

1. Navigating the JA world
Peter Chira, MD MS
Nicole Carlson, PNP
Juvenile Arthritis National
Conference 2012

2. The Journey
 Your crew
 Your equipment
 Your map
 Your destination
 Your community
 Detours and
weathering the storms

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

4. 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

5. 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

6. 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.

7. Your Medicine Family Tree
You and
Your Child
Primary Pediatric
Physician Rheumatology Team
Physical Laboratory/ Other
Therapist/ Ophthalmologist Social Worker Pharmacist School
Occupational
Radiology subspecialists
Therapist

8. 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.

9. 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.

10. 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.)

11. 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

12. 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

13. 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.

14. 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!

15. 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.

16. 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

17. 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

18. Your equipment

19. Dealing with insurance

20. Know Your Insurance Plan: Private
HMO PPO
 Everything (or almost  Make sure we are a
everything) goes “preferred provider”
through your primary  Most labs/x-rays can be
physician done at our facility
 Know your without extra charge
authorization status  Watch out for higher
(can take up 1 week) co-pays
 Make sure to find out  Prior authorizations
where you can have needed for certain
labs/x-rays done medications
 Prior authorizations
needed for certain
medications

21. Know Your Insurance Plan: Public
Medicaid Health Savings Accounts
 Insurance coverage and  Often pay for services
benefits varies from
state to state until you have met
deductible (typically
 Programs high)
administration can vary  Funds collected are tax
from county to county
(HMO/managed care exempt
versus PPO style)

22. 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

23. 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

24. 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.

25. 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

26. 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

27. 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

28. 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/

29. Your Map
Diagnosis
Treatment
Remission

30. 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)

31. 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

34. 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

35. 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

38. 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)
Drug Watch how they did
Unblind and
Patient analyze who did
group better
Placebo Watch how they did
(sugar pill)

39. 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!

40. Your Destination

41. 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

42. Your Community

43. 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

44. 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

45. 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

46. 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

47. 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

48. 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

49. 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.