The Honorable Mark DeSaulnier: Committed to Helping More People Live Longer, Fuller Lives after a Cancer Diagnosis

 

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Age: 66
U.S. Representative
California’s 11th Congressional District

As a new member of Congress who received a cancer diagnosis six months after coming to Washington, D.C., my goal is to advance treatments and to help find a cure.

In 2017, the National Institutes of Health (NIH) spent nearly $6 billion on cancer research. Federal investment in research has played a key role in making amazing advances that are extending and improving lives of patients and survivors. It is estimated that from 1991 to 2015 the overall death rate from cancer dropped by 26 percent, saving an estimated 2.4 million lives, largely due to improvements in cancer treatment, detection, and prevention.

This is progress that we can and must build upon. We need to continue to invest in cancer research, and improve both access to and the cost of lifesaving drugs, and enhance doctor-patient communications to help cancer patients and survivors from the moment of diagnosis through the rest of their lives as survivors.

I was diagnosed with chronic lymphocytic leukemia (CLL) in July 2015. It was a convoluted process. One day after a long run, I had a blood vessel pop in my eye. I went to a physician to have him look at it. While there, he suggested I should make an appointment with a dermatologist because he thought I should have an area of skin checked out. It was the dermatologist who noticed that my lymph nodes were enlarged and ordered the first blood tests that led to the diagnosis of CLL.

As someone who has always exercised and eaten healthily, I was shocked to learn I had CLL.

It took me a while to come to terms with the diagnosis, and it could have happened sooner with better doctor-patient communication. When you are in my generation and you hear the words, “You have cancer,” you jump to conclusions that are not necessarily very healthy or accurate. Fortunately, an oncologist eventually said to me, “Mark, 15 years ago, if someone like you got your diagnosis, we would sprinkle some water on you and say, go and enjoy whatever time you have left. But with the treatments that we have available to us now, you can expect to live a normal lifespan.”

My initial treatment was a chemotherapy infusion two days a month for six months. This eliminated the leukemia from my blood and I received no treatment for almost two years. At that time, there were signs the leukemia was returning and so I started taking an oral treatment, which I am still on.

Throughout the experience, I have been able to continue working and keeping my normal routine. Fortunately, I did not experience many of the physical side-effects treatment can cause.

The emotional aspect of the diagnosis was harder, and gave me insight into the challenges faced by those who receive a cancer diagnosis.

A cancer diagnosis still carries a stigma. Despite disease being part of the human experience for thousands of years, we continue to stigmatize diseases like cancer. In doing so, we degrade our own humanity and put in place unnecessary obstacles that limit progress. Instead we should support efforts and investments that increase and extend the quality of life. In many ways the biggest obstacle we face in eradicating cancer is as much emotional as it is physical.

More and more people are living longer and fuller lives after a cancer diagnosis. We need to take every opportunity to increase public and congressional awareness about advances that have been made against cancer as a result of federal investment in the NIH, and highlight what more could be done if we increased federal funding for cancer research. For example, discoveries arising from NIH-funded research for cancer and other diseases have provided a foundation for the U.S. biomedical industry, which contributed $69 billion to our GDP.

Increasing federal funding for cancer research will allow us to achieve an important goal of the bipartisan Congressional Cancer Survivors Caucus that I recently formed with Congressman Ted Poe, which is to work toward a future in which more people beat cancer.

The Caucus is also working to identify ways to destigmatize cancer and to improve communication between physicians and patients. To this end, Congressman Poe and I recently introduced legislation—the Cancer Care Planning and Communications Act (H.R. 5160)—to help patients better navigate their cancer diagnoses.

As a cancer survivor, who is grateful to have a healthy and full life ahead of me, I am dedicated to working with my congressional colleagues to help more people live longer, higher-quality lives after a cancer diagnosis.

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