An Anniversary, a Hope, and a Video

It's been nearly two years since our youngest daughter had her last shot of PEG Interferon.  Two years since we happily bid farewell to the sharps container and the alcohol wipes.  Two years since we left behind the marathon naps and achy tummy and bloody noses.  And two years since we learned that our daughter no longer tested positive for Hepatitis B.

Which brings me to the hope part of this anniversary.   When our daughter began PEG, it was not approved for pediatric use with Hep B.   Another type of interferon, Intron-A, had been used for many years with children, but not PEG, the extended release version of interferon that took the number of shots down from three times a week to only once a week.  Although the convenience was a factor, the biggest reason we pushed for PEG was that our daughter's doctor felt that it might have a slight edge over Intron-A in achieving success.  If we were going to spend a year doing shots, a year getting weekly blood tests; if we were going to inject our little girl with something that would make her feel sick, we wanted the very best stuff we could get our hands on.  As it turned out, getting that PEG delivered to our door wasn't so easy.   Because it wasn't FDA approved for Hep B, our insurance company said they wouldn't pay for it.  Our doctor wasn't surprised and wrote a long letter explaining why our daughter's situation was unique and why she felt PEG was her best bet.  The insurance company wouldn't budge.  I looked into purchasing the PEG out-of-pocket.  It would be $1,000.00 per shot, once a week, for a year.  In addition, there would be the fees for the regular lab work, and unbeknownst to us at the time, another $700 per shot medication she would need sometimes up to 3 times a week to counteract some of the detrimental effects of the PEG.  Out-of-pocket wasn't going to work.  So I gathered all the information I could.  In the dark den, illuminated by the glow of the computer screen, I spent many late nights taking notes on adult Hep B usage of PEG or on the safety of PEG used in pediatric cancer patients.  I sent all the information to the insurance company and filed an appeal.

With the appeal process, the insurance company sends the patient's information, and anything else the family wants to include, to another specialist in that field, one of their own choosing, and the decision is in the hands of the doctor.  Within a week, I heard that our insurance company's decision had been overruled and that a refrigerated package of PEG would be arriving on our doorstep whenever we wanted it.  I happily paid the monthly $35 copay.

And now, in small part due to my daughter's success, doctors at major hospitals on the East and West coasts are recruiting children with Hep B for a research trial of PEG interferon.  They plan to combine it with an oral antiviral, hoping that the lowered viral load will give the PEG the edge that it needs to wipe out the virus. I don't envy those parents or children the year of treatment.  It's not fun.  But I do hope and pray that when they pick  up lab results at the end of that year, in the column where it says: Hep B Surface Antigen, next to it will be the blessed word NEGATIVE.

In honor of this anniversary, I wanted to re-post my little girl's video.  She was 4 years old when she told her story.  She sounds so babyish compared to her current 6 year-old self, but at the same time, I'm impressed with her maturity and strength.  Always have been.