It Pays to Speak Up

My son suffers from migraine headaches. Bad enough headaches that he is on a daily medication to try to reduce the frequency and intensity of them. When he was first diagnosed back in 2nd grade (6-1/2 years ago), he was put on a generic medication that was very inexpensive. That dose was gradually increased to where he was only having 3-4 headaches every 6 months, and he was at the top of the dosing scale for his age and weight. About 2 years ago, the neurologist started taking him off that medication and put him on another medication (Topamax), hoping that he could take less pills and still have a good benefit. Unfortunately Topamax is not available in a generic form, and it has been getting more expensive, just like everything else. Since then, his headaches have increased in frequency, and subsequently the doctor has increased the dose of Topamax. The kids have insurance through their dad's wife, and it requires me to pay 20% of the shelf price of their medications. This means that I was paying $76 a month this last year for this one medication. With the price of everything else rising, I started giving my son the medication only once a day instead of twice a day. The frequency of headaches went up a little bit, and I was feeling tremendous guilt. It is so hard to face the fact that you can't afford medication your chid needs. Between this one drug for DS and DD's asthma medications, my pharmacy bill was over $125 a month. It felt like I had to choose between his migraines and her ability to breathe.

DS recently had a followup appointment with his neurologist, and I had to be honest about what I was doing and why. I was afraid he would think I was a bad mom for not giving the medication like it was prescribed. (I have worked for doctors for over 20 years, and I know what they think of noncompliant patients!) I couldn't have been more surprised at his reaction. He was truly amazed at how much I have been paying for the Topamax, and as he looked through DS's chart, he asked why we took him off the generic in the first place. Why? Because the headaches were getting better and under very good control, and he was trying to wean him off medication. But instead of lessening the medication, we have been increasing another drug, one that hasn't been doing the job for over 2 years. (His frequency was increasing even before I started cutting the dosage.) So he lowered the dosage of the Topamax and put him back on the original generic. Cost for the lower Topamax - $44. Cost of the generic - 44-cents! The doctor told me several times to call if there was a problem or I had questions about the medications between now and his next appointment and not to hesitate to bring up things like this.

Hopefully when we go back in 6 months, the headache frequency will be improved and we can decrease the Topamax even further or perhaps eliminate it altogether. But I never would have known if I hadn't said something.

It pays to speak up and be honest with your physician and medical providers. There are other options for most conditions that are less expensive, and most drug companies have programs to help low income families afford needed medication. Hopefully the change we made the other day will pay off, not only for my finances, but more importantly, for my son's health!