This is a Halloween horror story. It is short but not at all sweet.

Janet Huston and I participated in a panel discussion sponsored by the Campaign for Sustainable Rx Pricing on Thursday, September 29, at Drake University in Des Moines, Iowa. Also participating were John Rother, executive director of the Campaign, and Les Nichols, a health economist from George Mason University. The Campaign chose Iowa because of its caucus notoriety. There were approximately 50 in the audience, and the local press took notice.

We all discussed our concerns regarding the high prescription-drug prices in the United States, but it was Janet’s story that was poignant, revealing, and so very incriminating.

A retired lawyer, Janet discussed her metastatic abdominal cancer (gastrointestinal stromal tumor, called GIST). She is being kept alive with a palliative chemotherapy agent called Gleevec. It has kept her alive for six years, but it has cost her and her insurance company $144,000 a year. The company that makes Gleevec is Novartis. Janet claims that Novartis has paid a pharmaceutical company not to make a generic version of Gleevec in an effort called “pay to delay,” which means a maker of generic drugs agrees, for a fee, not to make the drug for a specified numbers of years to keep the generic version off the market. Janet further claims that as many as five manufacturers in India make a generic version of Gleevec and that the monthly cost to take this drug is just $200 per month in India and many other countries. According to Janet, Novartis imports Gleevec from India.

Les and John’s thoughts regarding drug pricing can be found by way of Google, as well as on the Campaign’s website. My thoughts on this issue have been shared previously in this blog. Please look at my posts from April 2015 and September 2015. None of our collective thoughts carry the weight of Janet’s story. Such a story undoubtedly plays out in the lives of  many others in the United States.

I was honored to be on this panel and to have the opportunity to discuss this important issue. Janet was asked about her goal for this effort, and she said that she wanted to testify before Congress regarding this issue while she was still alive.

We need a congressional champion for this issue. I hope we find one and Janet’s goal is achieved. In the meantime, the Halloween horror story continues to plays out.