No, scratch that!
The two most despised words are most definitely:
Let me explain.
My son Nicholas suffers from Prader Willi Syndrome. While an incurable and insatiable appetite is the most defining aspect of this syndrome, he also has been diagnosed with a multitude of dysfunction related to the brain, namely, epilepsy and narcolepsy.
The hypothalamus is the area of the brain that is interrupted by PWS. This small portion of the brain is, among other things, a control center for things like circadian rhythms and sleep cycles. Since the hypothalamus is not working correctly in individuals diagnosed with PWS, they often experience difficulty regulating sleep. Daytime sleepiness, night time wakefulness and narcolepsy are sometimes the end result of this brain disruption.
For the past few years my son has struggled to stay focused and alert at school, making it difficult for him to concentrate and more importantly, learn. This daytime sleepiness was so pronounced it inhibited his ability to learn to read.
Thankfully, my son is followed by a very proactive Neurologist. This kind and gentle man treats Nicholas with the latest medications that have helped my son live a healthier life.
After several discussions with a well known PWS expert endocrinologist as well as several PWS parents, this wonderful Neurologist and I began a trial of a medication for Nicholas called Provigil.
Provigil is used in the treatment of narcolepsy.
Nicholas is covered by two insurance companies, Blue Cross Blue Shield and CommonHealth.
He is considered "disabled" by the state and therefore qualifies for MassHealth (medicaid). My husband makes too much money for us to receive this "no cost" option. So instead, Nick is covered by another division of MassHealth called CommonHealth. We pay $120/month for this additional insurance.
Since Nicholas has been prescribed a number of expensive medications, this supplemental insurance is a necessity for us. We would not be able to afford all of his medical treatments on my husband's sole income. Nick's medical complexity and sheer volume of physician and hospital visits makes it impossible for me to work.
Thankfully, for several months both BCBS and MassHealth covered the cost of Provigil.
Nicholas thrived at school, and with the assistance of a wonderful teacher and this medication, he finally learned to read at age 11!
You can imagine our happiness. Our son was finally reading!
In July, however, we received a notice from MassHealth suddenly denying the coverage of this important medication.
They requested that our Neurologist fill out a prior authorization.
For those of you unfamiliar with a prior authorization, it is like "paperwork from hell" to a physician and his staff. He must now fill out a detailed form that describes his decision for treating his patient with this particular medication and wait for an approval from the insurance company.
I do not know about all of you, but questioning a competent physician/specialist on his treatment decision seems a little bold and somewhat disrespectful to me.
Our very accommodating Neurologist however, was compliant and provided this agency with their requested information.
A few weeks later, I received a noticed from said organization explaining that the physician had not provided enough information about the medical necessity of this medication.
So, once again our kind Neurologist now had to submit more data which included the results of my son's overnight sleep study.
I thought this was overkill, but if there is one thing our Neurologist is, it's thorough.
I was wrong, and once again, the medication is denied.
Now I receive a notice from MassHealth explaining that there are less expensive versions of this medication. My faithful Neurologist and staff call MassHealth who informs them of a medication called Nuvigil.
After careful evaluation of this new medication and discussions with me, our calm and competent Neurologist agrees to prescribe this new medication.
I am extremely thankful to Nick's Neurologist and tell him so. He has invested far too much of his time resolving this issue which has no doubt taken his time away from treating other children diagnosed with neurological issues.
Once again however, the medication is denied! This time by both BCBS and MassHealth.
Still my Neurologist and his staff persist. They call MassHealth and are connected directly to the pharmacist who now tells my esteemed Neurologist that MassHealth never recommended Nuvigil and Nicholas must have an overnight CPAP procedure before they will approve this medication.
A CPAP procedure is used to diagnose sleep apnea (a cessation of breathing during sleep), not narcolepsy!
Once again my kind and patient Neurologist explains to this pharmacist that a CPAP is used to diagnose sleep apnea and is not required for a narcolepsy diagnosis.
Our Neurologist is not successful in convincing this pharmacist and our medication is once again denied.
A CPAP procedure is a costly overnight study that is typically performed in the hospital. It is a particularly difficult test for the patient and often results in further disrupted sleep.
BTW, the original cost of the Provigil to MassHealth is $61!
My older son Weston, diagnosed with Autism/Aspergers/ADHD, is not qualified to receive CommonHealth, despite his disabilities. And even though he is covered by BCBS we still spend almost $400 per month on his medications. Add to that our costs for BCBS and CommonHealth and you see where most of my husband's monthly income is spent.
To rectify this medication denial, I must now submit a form to MassHealth requesting a hearing.
I will now be required to prepare the necessary paperwork and subpoena witnesses. I will have to hire a babysitter, drive to Boston and represent myself in a hearing with the state.
Of course for a nominal fee, I can hire an attorney. Except for the fact that my husband and I have already depleted our savings by hiring an attorney last year who found an appropriate school for Nicholas that helped him learn to read.
It has now been two months since my son has received his medication.
There are no laws to prevent insurance companies from behaving this way.
If I resolve this issue, there are no laws to prevent them from doing this to Nicholas again with another of his medication treatments.
I have contacted our Attorney General's office and requested a hearing with them. They cannot by law, force MassHealth to comply.
They are also a state-run office.....as is MassHealth!
If you are a reader of our blog, you know that last year's health and school issues did a number on our family and we are eager to find some happiness and peace in our lives.
It astounds me how often this special needs lifestyle requires me to pick up a sword.
Throughout Nick's 11 years of life, I have met many formidable adversaries who stood like ogres obstructing my son's journey and denying him a comfortable passage through life.
Because of the sheer number of these bloody battles, my husband, a reader of fantasy fiction, likes to call me, a Paladin.
What is a Paladin, I asked.
"A Paladin is like a knight who protects the weak, brings justice to the unjust, and vanquishes evil from the darkest corners of the world," he explained.
"They are the healers and guardians of goodness, they are surrounded by light."
For now, my husband's image of a Paladin has helped me to embrace my difficult role. I have put aside my weariness and will continue to advocate for both of my children.
They deserve to be happy and free from the side effects of incurable disease.
I will continue to fight for them.
Lisa Peters writes about her family adventures at www.onalifelessperfect.blogspot.com. Please feel free to drop by for a visit.
To learn more about Prader Willi Syndrome, please check out our national organization at www.pwsausa.org.
Thank you for reading.