Epilepsy Patients: Cutting Costs in Medication Can Hurt

“I would hope that anyone who changes my meds for any reason would let me and let my doctor know.” Katie testified before the Senate Health Committee last Thursday. She held her mom’s hand and filled her mom with tears of pride.

Katie has epilepsy – a disease of seizures. The drugs helped control the seizures. But just a little too much medication and she could have bad side effects, too little and she could have seizures.

Doctors and patients drove to Madison to tell of a problem with insurance companies substituting cheaper drugs for those that actually works for patients.

The bill, known as Senate Bill 71, would require pharmacists to let doctors and epilepsy patients know when a drug had been substituted.

During the hearing many patients and physicians testified about how sensitive people are to epilepsy medication and how a slight variation in drug levels could lead to serious symptoms. The senators learned that drugs vary from 80 to 120 percent in their active ingredients. Sometimes the ‘inert’ ingredients that deliver the drug vary also.

What patients experience is an up and down of the drug levels - sometimes too much, sometimes too little. For most diseases this is tolerable but for epilepsy it results in serious side effects or seizures.

Warren testified that his drugs had been changed several times, first substituted with a generic and then another generic. Within a week, he noticed symptoms. According to Wisconsin law he had to voluntarily turnover his license for at least 90 days. He found someone to drive him to work but things were more difficult.

Patients asked only that pharmacists let them and their doctors know when substitutions of one brand for another are being made. But the problem seemed to warrant a deeper look.

Pharmacists testified that some of the insurance companies will only pay for the cheaper version – even when the doctor checks a box on the prescription that says “dispense as written.”

Companies called ‘pharmacy benefit managers’ set the rules on payment for drugs. This type of company has been around for about 10 years. No one regulates them.

We learned of the Federal government’s involvement through the Food and Drug Administration. The FDA regulates drugs, but they tolerate much more variation in the active ingredient of the drug than the physicians who testified thought was wise. The FDA knows about the problem and has publicly stated that someone needs “to do a good study.”

Patients trust that the doctors and pharmacists know what they are doing when they substitute a red pill for a blue pill. In truth, doctors never know when drugs are substituted. Pharmacists want to comply with the doctors’ orders, but they are following the directions of the insurer who said they would only pay for the drug of a different company. The insurers are trying to keep costs down for the businesses that are very concerned about rising health care costs.

Like so many problems in health care – things always get back to rising health care costs.

Certain questions must be answered. Why are pharmacists and insurers not required to honor a doctor’s order not to substitute a drug? Why is a pharmacy benefit manager not regulated like other insurers? And why does the FDA allow so much variation in a drug that it loses its clinical effectiveness?

And how do Katie and Warren get the medicine they need to stay healthy and productive?

Have experiences with epilepsy and substituted drugs? Let me know. Write: State Capitol; P.O. Box 7882 Madison, WI 53707-7882 or sen.vinehout@legis.wisconsin.gov; call Black River Falls (715) 284-1730; Eau Claire at (715) 838-0448 or Madison at (877) 763-6636 (toll free). Visit my website at http://www.legis.state.wi.us/senate/sen31/news/