A letter that I wrote to my local sentor

June 17, 2008
Hi My Name is Tara Woodman and I am the mother of a child who suffers from Opsoclonus-Myoclonus Syndrome and Neuroblastoma. My son Makhi was diagnosed in July of 2007 after a scary and frustrating misdiagnosis (12 weeks misdiagnosed with post viral cerebelltis) let me first give you a little insight on Makhi’s condition. Nueroblastoma is a rare form of childhood cancer only about 400 to 600 reported case in the US per year. Along with Makhi having Neuroblastoma he also suffers from a rare disorder called Opsoclonus-Myoclonus Syndrome this disease is so rare that most neurologist will never see this in their whole career. There are only around 30 to 50 cases of OMS reported each year worldwide.


Once Makhi was diagnosed with Neuroblastoma & OMS in July of 07 I was advised to apply for SSD for my son so that he would have a secondary insurance. In July of 07 when Makhi was diagnosed with NB and OMS he was on Capital Blue Cross insurance though the CHIP program. They were wonderful as far as paying bill and allowing Makhi to see whatever specialists necessary.



There is only one doctor in the U.S that specializes in OMS. Dr Michael Pranzatelli is the doctor and also the founded the National Pediatric Myoclonus Center in Springfield, Ill. It is the largest OMS treatment and research center in the world.


This is where my husband and I take our son Makhi to every 6 months for a lumbar puncture. The testing must be done on freshly acquired CSF leukocytes, so it cannot be shipped, even by courier so this is why we must travel there every 6months.


We had a appointment on March 12, 2008 that was approved by the insurance. Unfortunately I have received a bill from Memorail Hospital in Springfield for 6,546.40 and the total bill was 6,904.40 which means that MA is ONLY willing to pay 358.00 of the total bill.

Ameri Health Mercy has told me this is all PA allows for this testing
.

I NEED HELP I am not sure what to do I have spent countless hours of the phone with Ameri Health Mercy trying to get help. This visit is medically necessary and vital to my son recovery from this horrible disease. I am unable to afford to pay this bill. My son condition has kept me from being able to bring home the income I once did. I am only able to work weekend when my husband is home with my son because he is so immune suppressed. We must go back to Springfield IL in September of this year for another lumbar puncture which will be another 7,000 bill I can’t afford.


ACTH GEL MEDCINE

I am also at the mercy of Ameri Health Mercy on a monthly basis and I spend countless hours on the phone along with Makhi’s doctors also spending a lot of time tyring to get my sons ACTH Gel which is a VERY expensive steroid that is given intramuscular. It is so expensive that you can only receive this medication for 3 pharmacy in the U.S (Medmark, Bioscript, Cescor) . One vial of this medication is $27,000 for a (5ml) vial. Questcor is the ONLY maker of this drug.
(www. questcor. com).

Because they are the only makers of ACTH Gel Questcor can decided what price they would like to make this medication
When my son was first diagnosed with OMS the price was 5,000 a vial and in April of 2008 the price went up to 27,000 a vial. I struggle monthly getting Ameri Health Mercy to pay for this medication. What I only wish I could get Ameri Health Mercy to understand is this med is not something that I can go down to street and buy nor can I go to my local hospital and get this med . My son could have a full blown relapse without this medicine which will cost them so much more in the long run. My son uses 1 vial a month (5ml) .17 every other day= $27,000. If he should relapses he then would be put on .55 ml twice a day for two weeks and then .55 every other day which = 3 vials $81,000 a month. I think it would be in there best interest to pay the $27,000 a vial a month and hope that we can get Makhi off this medicine in the next year. Last month we missed a dose because the insurance company and the pharmacy could not figure out what they were doing.


This is just my personal thought on this issue most child who have Opsoclonus-Myoclonus Syndrome are on some sort of a MA government program because it is consider being a disability why didn’t the government buy the rights to the medication before the FDA approved the medicine.



Now my son’s health is in the hands of the insurance company and an overpriced pharmaceutical company who really don’t care. This is a form of highway robbery and unfortunately there not much I can do about this but one thing I do know is my son health hangs in the balance between my insurance company and Questcor and that is a crime in itself.


All help would be kindly appreciated
A Mother of a child with NB and OMS
Tara Woodman
e-mail tarawoodman@comcast.net
Come and meet Makhi at his webpage there is a video of him on there if you scroll to the bottom of the page you will see it this will just give you a idea of what this boy has been though. www.makhiwoodman@blogspot.com
You can visit www. omsusa. org to learn more about OMS