I am pissed. That’s putting it mildly. My kids have enough to deal with, they don’t need further obstacles put in their way.
But that is exactly what is happening.
My biggest issue right now is with the Namenda trial Jack is enrolled in. We have been at the Children’s National Medical Center site for the Forrest pharmaceuticals study of the use of Namenda (a dementia medication) in the treatment of autism. Jack began this study in May of 2013; he couldn’t start sooner as he was not old enough. We went through multiple visits for preliminary testing, then every 2 week visits, then finally monthly. The study has been run poorly by this company the entire time- they progressed to a “new phase” giving the researchers (at 20 sites in the US mind you) 2 day’s notice to see ALL of their patients. We have been called back for blood work when they forgot to ask for ONE tube of blood- this is almost a 3 hour journey round trip in traffic. We have gone for visits at ridiculously inconvenient times, including coming home during rush hour from DC in the direction of the beach on a Friday in August. That was a blast. I dealt with being chastised for “frequent absences” from work and made the difficult decision to file for FMLA for both boys, something I should have done long ago, but resisted- it was a pride thing. I worked my ass off to make sure that I took no more than my allotted hours off, never went over them, but it didn’t matter, because the fact that I took them one day at a time for appointments, etc., created many “incidents” which apparently looks bad. So I had to protect myself, my family comes first, end of discussion.
But all of this was ok. I chose to do this study because I wanted to leave no stone unturned when it came to helping the boys. This medicine is milder than ADHD meds, i.e., Jack didn’t fall asleep 5 times a day or scream when I left him in his room at night, his focus was maybe a little better, but it’s hard to say. It was a mild difference and honestly could be that he’s just maturing. So I wasn’t even sure the medication was helping. But about 3 weeks ago he finally reached the weight cut off and we were able to double his dose- effects may not show for about 8 weeks, so we have been hoping.
And then? Rug=pulled. Forrest decided that they have enough data from other subjects and ended the study. This is NOT the same thing as ending enrollment, or not taking on any new subjects. No, they decided to pull all of the kids off of the medication, whether they completed the study period or not. I am livid and feel that this is extremely unethical. If the study period was set for 2 years, it was for a reason- this is what we signed up for, this is what we put our children through numerous blood draws, ecgs, and developmental tests to achieve. This is what caused me to miss so much work. Every family in this study worked for it. And now it’s just over. We went for our “final” visit today- 2 hours of testing (which I frankly considered refusing multiple times) and Jack no longer has the medication. No weaning, nothing, just done. So even studies that are there to “benefit” our kids will only benefit them if more data is still needed???
Now I am FURTHER refining my criteria for any future studies. It’s pretty specific. NIH or center based studies only. Never again will I subject my child to a study run by a drug company. They clearly gave no consideration to the subjects as actual people- children. And it sickens me. I had to work really hard to be kind to the researcher and nurse today, even knowing that it is totally not their fault. It is totally out of their hands when the study is “closed”. But I don’t know that I could work under those circumstances- they have developed relationships and trust with these families, only to withdraw support with no warning. Awful. They did tell me that I could ask my pediatrician if they would prescribe it. I already had, and she said that if I wanted to continue it, she would research it and prescribe it for us. We are lucky though- we have an amazing pediatrician who is very forward thinking. That is not the case for many other children.
Between this and our insurance company’s continued denials of both boys’ OT for habilitative services/with an autism diagnosis, I am on the war path. I have given Cigna IN WRITING, the policy 3 times. They didn’t develop appropriate coding for the procedure- a rep told me. Guess what? Not our problem. Find a miscellaneous code, and suck it up. They had better get their asses in gear and quickly as they literally advertised these services in the open enrollment pamphlet for 2014. I may have been the only one who found out about it for 2013, but it’s common knowledge now. The HR representative at my husband’s job was to call Cigna and get this fixed, as I know if I call again it will not end well. Meanwhile, my boys missed their appointments last week. Because of insurance denying covered services.
So basically, if you use private insurance you’re screwed, if you go the study route, thus avoiding the insurance debacle, you are also screwed. Love it.