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The Deans’ Genes and Precision Medicine: A Journey of Discovery and Hope

Summary: 
Since my first visit to the National Institutes of Health in 1992, I’ve had to have one kidney removed and nearly 100 tumors excised from the other.

One tumor is a difficult thing to face. Imagine having nearly 100.

Like my father, aunt, uncle and other relatives, I have a very rare hereditary condition where a mutation in what is called the MET gene causes cancerous tumors to continuously grow in my kidneys. Since my first visit to the National Institutes of Health in 1992, I’ve had to have one kidney removed and nearly 100 tumors excised from the other.

I lost my father and other relatives to this disease, but thanks to new advances in medicine, that doesn’t have to be my fate.

What I did not know at the time was that I was to be part of cutting edge science and medical care that’s become known as Precision Medicine. Precision medicine refers to treatments, therapies, and care tailored to individual patients. By looking at people’s specific genes and lifestyles, doctors and scientists, like those at NIH, can get the right treatment to the right person.

When I first visited NIH, doctors worked to manage my tumors, figuring out exactly how big they could grow before they needed to be removed. By using precision medicine, looking at my unique hereditary condition, they identified that I had a MET gene mutation. The discovery of my gene mutation allowed doctors to pinpoint exactly what was causing the tumor growth and tailor treatment to me. They gave me a drug being tested in a clinical trial that targets the MET protein, and my tumors began to actually shrink.

Since my first visit to the National Institutes of Health in 1992, I’ve had to have one kidney removed and nearly 100 tumors excised from the other.
Secretary Burwell meets with Don Dean, front right, at the National Institutes of Health.

It’s been a long journey of more than 130 visits to the National Cancer Institute at NIH over the course of 22 years. During one surgery alone at NCI, doctors removed 59 tumors. They ranged in size from one centimeter—about the size of a little fingernail—to over 3.5 centimeters—about the size of a small walnut.

The diagnosis of my cancer and the identification of the MET gene mutation have also been central to one of the next generation of cancer therapies, known as MET inhibitors. My doctors gave me a trial MET inhibitor designed to interrupt the chemical signal that a cancerous cell sends out to healthy cells and stops the growth. In other words, my treatments interrupted the signal, resulting in starving the cancer cells. While all the results on the use of MET inhibitors aren’t in yet, the tumors in my right kidney have shrunk by 60 percent, and the side effects have been notably less challenging than more traditional chemotherapy treatments, which are designed to kill cells.  (The potential risks and rewards were thoroughly explained to me, and I consented to the treatment.)

The remarkable progress in genetic research has opened doors to treatments that are increasingly specialized and successful. President Obama’s 2016 budget proposes to invest $215 million to launch the Precision Medicine Initiative to pioneer patient-powered research that will accelerate biomedical discoveries and help doctors select the treatment that works best for their individual patients—not for the “average” patient.

Survival, of course, is its own reward and I am grateful for my health. While some tumors began to grow again after the drug was stopped and had to be removed by surgery in 2013, last November, my doctor told me my kidney is clear of tumors.

It was a privilege to be part of a team of dedicated individuals at NCI, in pursuit of discovery and solutions. If the journey that I’ve been on can help others as well, it’s an honor and blessing for me. I recently told HHS Secretary Sylvia Burwell that I thought of NIH and NCI as a bright beacon to the world. Sometimes, I told her, the best thing you can give someone is hope.

To learn more about the hope and future of precision medicine, go to http://www.nih.gov/precisionmedicine.

The NIH Advisory Committee to the Director presented to NIH Director Francis S. Collins a detailed framework for building a national research participant group, called a cohort, of 1 million or more Americans to expand our knowledge and practice of precision medicine. See the report here and news release here

 

The Deans’ Genes and #PrecisionMedicine → http://1.usa.gov/1iRJy2L via @HHSGov

 

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