Adriana’s Dying Wish

“I am dying. We all die someday, but my expiration date is sooner than most. At age 41 I am facing my second recurrence of cancer. I was first diagnosed with an advanced and rare type of breast cancer in 2001. This led to a large tumor in my brain last year. Now the cancer has spread to my spinal fluid, which will likely seal my fate within weeks.”

So writes Adriana Jenkins in a column Forbes will publish next week called “A Dying Wish.” It already appears online, here, and is a must-read for anyone in the field of personalized medicine.

Unfortunately, Ms. Jenkins died on February 9th, just before the piece was published, though I am told that she did see it in print, which made her very happy.

She had sent us her draft ten days earlier. I was very moved by her essay, and recognizing the power of her argument, told her that PMC would like to publish it in our next newsletter, which, with Forbes’ permission, we will. She was very pleased.
 
In her article, Adriana notes that she participated in the original Herceptin trial, a drug she credits with extending her life by nearly a decade. As she describes it: “A targeted cancer drug kept me alive for nine years. Congress must ensure that future patients get the same chance to live.”

She asks why there are not more personalized medicines on the market, and pointed to some of the business model challenges inherent in discovering and developing targeted treatments linked to advanced diagnostic tests. She calls for better incentives to speed the development of personalized medicine, pointing to the Orphan Drug Act (which grants longer market exclusivity and other incentives for drugs targeting small populations) as one potential model.

Concluding her article, Adriana wrote, “I am so grateful for the extra time a PM drug gave me. My hope is that future patients have the same chance to benefit from personalized medicine.”

Adriana’s struggle, and her dying wish, should be a rallying point for all of us involved in the field of personalized medicine. Hers is a call for renewed commitment to stimulate more investment in the development of personalized medicine products, in particular through the creation of public policy incentives, such as those outlined in the Orphan Drug Act and elsewhere in other laws.

This year PMC will redouble its efforts to advance the understanding and adoption of personalized medicine concepts and products for the benefit of patients like Adriana.

We owe it to her and to ourselves.