Opinions Archives - Page 2 of 3

We Don’t Have 5 years!!

The moment was awkward. We had invited in a handful of patients who had the disease we were working to treat to our annual Development Team all-hands meeting. We wanted to learn from them and to be motivated by them. They poured their hearts out to us. They told us about their lives since the…

This Symposium Was Truly Rare

Image of a complicated highway intersection

Sometimes you get the chance to experience something that resets your expectations. The Salem Oaks team had the opportunity to attend the Rare Patient Advocacy Symposium in Philadelphia on May 19, 2018. The event was organized in partnership between Global Genes and the Orphan Disease Center at UPenn. Although I may have only recently jumped…

Who would Vote Against Patients’ Right to Try?

http://bit.ly/NoR2T

How to Incorporate Family Caregivers in Chronic Care Management

We need to help people understand their rights to information (and to privacy) when they choose to help care for a family member. The article points out many barriers to family members effectively assisting in the care of loved ones. http://bit.ly/2DLfTD6 This situation seems similar to writing one’s last will and testament. It needs to happen…

How many blessings can be squeezed into 20 years?

Twenty years ago, today, I woke up and had cancer. I had no idea what the day would bring. It had been about two months since I was diagnosed with myxoid liposarcoma in my left thigh.

Educating Patients: Taking Action to Refocus and Accelerate

Over the past weeks, I have discussed several barriers that make it difficult to involve patients in developing new medicines as much as everyone involved would like. My theory is that we need to do a better job educating patients. I’d love to hear your thoughts on this topic. Some of these barriers may seem obvious and manageable…

Are We on the Right Track?

Choices. Have you ever found yourself in an unfamiliar city trying to get from point A to point B as quickly as possible? Taxi? Bus? Subway? Traffic scares you, so the subway it is. You stare at the nicely designed kaleidoscope of a map and try to make sense of which trains are going where, when,…

No One is Truly Objective

As the winter approaches here in New England, the picture above caught my eye. What do you see? Is the sun setting… or rising? What’s up? What’s down? Where was the picture taken? When? How can you be sure? Did my opening line influence you? Introduction There seems to be a consensus from all the stakeholders that increased patient…

Fellow Travelers on a Long, Cold Road

The journey to a new medicine is a challenging, uphill, and winding road. Whenever a patient gets involved in medicines development, they are likely to face a roller coaster of hopefulness and despair like they have never experienced. Since only about 5% of the compounds and proteins put into advanced testing a make it through to market…

Leveling the Playing Field

“A champion named Goliath…came out from the Philistine camp. He was over nine feet tall. He had a bronze helmet on his head and wore a coat of scale armor of bronze weighing [125 pounds]; on his legs he wore bronze greaves, and a bronze javelin was slung on his back. His spear shaft was like a…