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 crewNurse Practitioners/ Physician AssistantNurse specialists Clinical nurse specialists/ nurse practitioners – handle questions about patient care related information Research nurse/ research coordinator – handles pediatric rheumatology study related informationSocial WorkersAdministrative AssociatesClinic 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 Pediatric Physician Rheumatology Team Physical Laboratory/ Other Therapist/ Ophthalmologist Social Worker Pharmacist SchoolOccupational Radiology subspecialists Therapist
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 TherapyMake sure your child feels comfortable working with the PT/OT to maximize therapyHome programs are valuable but only work if your child does themFind 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
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
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)
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 Lawon 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 InformationPreviously 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 forChildren with Special Health Care Needs(CSHCN)Each state has a different name to the programCoverage up to age 21Services provided vary by state, so if you move please be aware of differencesThis is a federally mandated program
Title V: Children with Special HealthCare Needshttps://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 Childrens 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 HealthCare Needshttps://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- assistanceprogramsExamples 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/
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 InformationTextbooks – sometimes outdatedMedical 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 PediatricsYou can search the website to make sure they are members in good standingSince 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) Drug Watch how they did Unblind and Patient analyze who did group better Placebo Watch how they did (sugar pill)
Interpreting Medical LiteratureWhen 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!
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
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 networkingBulletin Boards/ Facebook groups are very useful as a source of support and communication in a communityEvery person is different and one person’s perspective may not be reliableTake “cure-alls” with a grain of saltBe careful of alternative or miracle therapies i.e. herbals are monitored by the FDA but under the Food section
AdvocacyYou 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: FlaresWe always hope that children reach remission and never have a flareFlares 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 tocontrol 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 goodbyeUnless 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 usPreparation 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 LineAlways advocate for your childTry to organize a medical notebook for your childBe careful of what people say and what you read from bulletin boards, internet sites, and magazinesWhenever you have questions, please don’t hesitate to ask. The only bad question is the one that WASN’T asked.