Nine-and-a-half years ago, my son Brady joined our family. My husband and I knew something wasn’t OK, and by the time Brady was 3 weeks old, he had been diagnosed with a frightening genetic disease: cystic fibrosis. We learned that cystic fibrosis would demand handfuls of pills with every meal of our baby’s life to enable him to digest food and grow properly. We learned how the disease would primarily affect Brady’s lungs and slowly rob him of the ability to breathe.
When Brady was born, the life expectancy for those with cystic fibrosis was around 37. Battling the lung decline with inhaled breathing treatments and lung clearance consumed hours of every day.
It was the darkest time of my life. I can’t describe the fear and pain we felt as the dreams we had for our child seemed to slip away. After months of adjusting and mourning, I began investigating the medical research that might help Brady live a better life. I had earned a bachelor’s in chemistry, which helped me take the first steps into the world of genetic medical research. I started attending national research conferences and making personal connections with scientists working to treat and cure CF. To my surprise, advancements in research offered real hope.
When Brady was just 4 years old, a breakthrough new drug was approved by the FDA to treat his specific genetic mutations. The new medicine had a dramatic positive effect on his health, immeasurably improving his daily quality of life. In fact, the drug is predicted to add decades to Brady’s life expectancy. Doctors marveled at the miraculous effects of the new treatment. Science had helped our wildest dreams come true. Today, Brady can breathe normally.
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I give thanks every day for the science that brought this miracle into our lives. Research projects funded by the National Institutes of Health (NIH) played an absolutely vital role in this progress. Drugs to treat specific genetic defects would not be possible without the understanding gained from the NIH’s Human Genome Project. Furthermore, Brady’s miracle drug was discovered through a technology brought to us from NIH research — robotic “high-throughput screening.” Without a doubt, my child would not have the full life he enjoys today without the NIH.
On March 13, President Donald Trump released his budget proposal, which would slash funding to this vital agency by 20 percent and dramatically disrupt new and ongoing scientific research projects in America. This troubles me for many reasons. First, investments in the NIH positively affect our economy — driving growth and cultivating the biomedical workforce of today and tomorrow. More important is that the NIH is an investment in the health of this nation. Many researchers working on curing cystic fibrosis and other diseases would be forced to abandon research projects because of these cuts. I implore Congress to have the courage to intervene and protect the NIH. The impact of cuts to medical science will be felt by anyone depending on 21st century medicine — which is all of us.
Rebecca Schroeder lives in Coeur d’Alene with her husband and son.