Related Article: Drug Price Soars from $1,650 to $23,000 Per Vial To Treat Babies with Infantile Spasms: Parents and Physicians React

How did you feel when you first learned of your son’s diagnosis?

Broc was diagnosed with Infantile Spasms (IS) when he was 6 months old. After we returned home from the hospital, I went right to the Internet to find out whatever I could about IS. The things I read about what the future could hold for my child were not what I wanted to hear about.

How has it affected your family?

During our first stay in the hospital we had a nurse that had a special needs child of her own. She told me something I will never forget. She said that their family life was normal for them, and I think that sums it up very well for us. Despite some medical equipment that we have, multiple seizure medications, and a little extra planning, life is very normal for us.

What compelled you to start a website for Broc?

Where we live, here in Nebraska, there are may be five children a year at our local hospital diagnosed with IS. That’s when I realized what a need we had to learn more, to get together with other parents, to become organized enough to become a source of support for others and to receive support from others.

What struck us was the difference between what we read about, what we heard, and what we began seeing from a parent’s perspective over the last 5 years.

With more common conditions, people know the children. You know who has the condition. You know who goes to school. But when you have something such as IS that affects so few children nationally, you have to create your own community. We have come to meet several other families locally and we get together with them on a somewhat regular basis. We also have come to know hundreds more through support groups on the Internet and "meet" with them on a daily basis. (http://www.infantilespasms.com/)

What is it that inspired you to take videos of what you suspected were seizures?

We took the videos on recommendation from our doctor. That was invaluable in Broc's diagnosis. I have read statistics that say as many as 90 percent of the cases of IS are misdiagnosed the first time because so few doctors have experience with it. We have a wonderful pediatrician, Dr. Chandrika Rizal. Although she has been in practice for many years, Broc was her first IS patient and as far as I know still her only one. We are so grateful for what she did. She saw the video and didn't have a good explanation for what she saw. But rather than dismissing it as nothing -- she sent it on to a pediatric neurologist. After viewing the video it was very obvious to him that Broc was having seizures.

You have other children. How do they interact with Broc?

At first Broc's diagnosis was very scary because we didn't have any idea what to expect. But as time went on, as I said earlier, life just became normal for us. Although he is cognitively delayed, he is a very happy, loving child.

Was Broc put on ACTH medication right away?

Yes, we heard it was the first line treatment. Financially, we were able to get the medication. We did 6 or 7 bottles for two rounds. It cost us about $15,000 and it was covered. But if we didn’t have the money, we would have called friends, families, held fundraisers. The thing that every parent wants is to do what is best for their children. But now, a parent can be looking at $200,000 for two rounds of treatment – and that is life-changing.

Why are you so concerned about the price of ACTH medication?

One thing Questcor fails to consider is that many of our children have multiple medical issues. If a patient has a $1,000,000 life time maximum for payments from their health insurance, and spends $250,000 of that in the first year of a child's life on one treatment, that is going to have a big impact on future medical decisions.

I also feel Questcor has abused the Orphan Drug Law; my understanding is that this law was put in place to encourage companies to develop medications for small populations. Questcor did not develop Acthar nor have they added any value to it, in my opinion. It is a 50-year-old medication. I think if one looks into the whole situation it will become obvious that Questcor acquired Acthar and thought they would find additional uses in the multiple sclerosis community and failed. This cost millions of dollars and now they are expecting our kids to bail them out.

What do you feel is the most important aspect of your son’s website?

One thing people comment on is the video. It is a clear example of one of the ways that IS is manifest. Also, it is an alert board – when the Questcor announcement went up – we were already making certain that news went to the entire IS community.

Edited by Steven C. Schachter, MD