Pre Healthcare Reform: A Family Perspective December 3, 2010

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1 Pre Healthcare Reform: A Family Perspective December 3, 2010 Lisa Moss, Seizure Tracker American Epilepsy Society Annual Meeting

2 Pre Healthcare Reform A Family Perspective Hot Topics Symposium: From Headlines to Healthcare December 3,

3 Evan Moss not defined by Epilepsy! 3

4 Evan s Early Years Normal Pregnancy Healthy Baby Loving Family Picture Perfect! During Evan s first month of life, his seizures began. 4

5 Battling Epilepsy 9 meds Oxcarbazepine Levetiracetam Lamotrigine Phenytoin Vigabatrin Divalproex Zonisamide Topiramate Klonopin More Tests More Meds More Seizures Evan s personality began to dull. 5

6 Exploration and Discovery Epilepsy Diagnosis Medication EEG MRI Tuberous Sclerosis We were all on a path toward change. 6

Brain Surgery 300 400 Seizures Per month and increasing Hospital

7 Brain Surgery Seizures Per month and increasing Hospital Stay 3 Weeks in PICU Optimism Trust We knew we made the right choice. 7

8 Relearning Milestones Walk Stand Crawl Climb Stairs Run Ride a Bike Initially Physical Therapy was three days a week. 8

9 Today 7 years old Intelligent Funny Compassionate Adventurous Spirited still having 3 seizures a month 9

10 Annual Healthcare Tally, 2010 Annual Coverage Cost $3900 Deductible 500 Max Out of Pocket Expense 4000 $4500 Middle Class $25,000 $100,000 Annual salary Doctor Visit Co Pay $ 120 Physical Therapy Co Pay 1560 Emergency Room Co Pay 100 Medication Co Pay 1240 $3020 Travel $1500 Total $12,

11 Getting Connected Facebook Seizure Tracker Epilepsy Foundation Tuberous Sclerosis Alliance If you don t like something, change it; if you can t change it, change the way you look at it Mary Engelbreit 11

12 Community Questions 12

13 If you could change one thing about your epilepsy related healthcare, what would it be? The insurance companies should pay for name brand medications when the doctor prescribes them. The cost my insurance only covers a small portion. I d like to actually HAVE insurance! All the paper work!!! I d like to be able to go to any doctor I want and have my visit covered! 13

14 When you receive a medical bill, how long does it take for the insurance to pay their part and you to determine how much you owe? Is it billed correctly the first time? Ours are rarely billed properly the first time and take some back and forth to get it worked out. About two billing cycles. I ve already set up monthly payments to pay off the ever mounting balance, so the subsequent payments just get added on. We have had to deal with incorrect billing a few times in the last 3 years, but all in all, we have amazing insurance. Such a huge ordeal I can t even imagine what trials those without insurance experience. The struggles are challenging indeed. 14

15 Are you able to budget effectively for healthcare costs related to epilepsy? No. I got dropped from my insurance after the third visit to the doctor. The company said because I have seizures, I was too big of a risk. At over $500 a month for meds not really. My daughter has Medicaid and is only allowed 12 visits a year, which she uses by August. They are refusing to give extra visits. I ve already refinanced my house and borrowed money to pay off her medical bills. Forced to be very creative! Waivers help but paying for meds that work is still a battle. My employer changed health insurance plans and we suddenly had to rearrange the budget! What happens to those that cannot rearrange a budget? 15

16 Have you ever had an issue with having your medication switched? (Either going from brand to generic or between two generics.) I was switched to generic due to cost and the pharmacy switched generic brands w/out my knowledge it was cheaper for them. I tried it and it failed. The pharmacy now has my meds on special order. The insurance company refused to pay for brand since there was a generic available. Mine was switched from brand to generic without my notification or permission. I had to have my doctor write DAW on the prescription. My insurance covers it, but my co pay is higher for brand name. I ve had trouble with several AED generics in the past, so I only get brand name now. 16

17 Poll Questions 17

18 Does your pharmacy inform you when they change the manufacturer / supplier of your generic seizure medications? 49% Never 14% Always 13% Sometimes 12% When I ask 9% I only use brand 2% Other 18

19 How would you rate your access to quality epilepsy care? 32% Average 27% Good 25% Excellent 12% Below Average 3% Poor 19

20 Have you ever had issues getting or keeping insurance because of epilepsy? 53% Never Had Problems 18% Only limited coverage 12% Other 9% It s too expensive 6% Insurance was denied 3% Insurance was cancelled 20

21 Ease the Burden from top to bottom I must do something always solves more problems than Something must be done. Author Unknown 21

22 Disclosure Nothing to Disclose American Epilepsy Society Annual Meeting

Midwest Seizure Smart Conference. Lisa Moss Co-Founder of SeizureTracker.com Mother to Evan who lives with TSC

Midwest Seizure Smart Conference Lisa Moss Co-Founder of SeizureTracker.com Mother to Evan who lives with TSC July 18, 2013 Living with Epilepsy Family Impact Flexibility Communication Learning to redefine