Over the years I have worked on environmental and public health issues in Washington DC, I have attended many, many hearings. And I have seen and heard many people testify at these hearings. Most people, whatever side or interest they are representing, do a good job. Very often they are government officials from any number of federal, state or local agencies or elected offices. They are frequently professionals--typically lawyers, scientists, and academics--or members of trade associations. They deliver their testimony in a clear and concise manner, and are generally prepared to provide responsive and even helpful or enlightening answers.
But on a couple of occasions I have seen extraordinary, riveting testimony that completely captivated every Senator or Representative in attendance, as well as the staff, the public, the press, and anyone else in the hearing room. One of those times was when Jerry Ensminger testified at a hearing about the cancer cluster at Camp LeJeune in North Carolina where he lived, and about his nine year old daughter who died of leukemia.
Another of those times was earlier today, when 21-year old Trevor Schaefer delivered measured but powerful testimony about his own successful battle with brain cancer – beginning at age 13 – and the need for Congress to take action to protect children and assist communities that are potentially affected by disease clusters.
Trevor, who travelled to the nation’s capital from Boise, Idaho, spoke today at a Senate Environment and Public Works Committee Oversight hearing on Disease Clusters and Environmental Health. In a little more than five minutes, he described his personal experience receiving cancer treatment at such a young age, how his life has been affected and may be in the future, and how his experience is an important window on a widespread problem that affects people in cities and towns all across the country. My one sentence summary doesn’t begin to do it justice. I highly recommend you take a few minutes to watch the testimony for yourself. (it begins at 31:15)
Trevor spoke specifically in support of legislation introduced by the Committee’s Chair, Barbara Boxer of California, (a Democrat) and her committee colleague, Michael Crapo of Idaho (a Republican) that would improve federal coordination and assistance for state and local governments, and community members that are trying to identify potential disease clusters or determine the potential causes of such clusters. It has been referred to as “Trevor’s law” and, after seeing his testimony from today’s hearing, you’ll know why, and you'll want to do what you can to help it reach the President's desk.
Trevor was joined on the witness panel by Erin Brockovich, yes, the Erin Brockovich, who described the thousands of contacts she receives every month from people all over the country who are struggling with striking numbers of illnesses in their communities, and are frustrated by the lack of an adequate response or assistance from government agencies. People know her story, and know that she cares about them. They turn to her for help when they believe the government can't or won't help. Her testimony was also excellent. (it begins at 40:35)
And my colleague Dr. Gina Solomon testified about her professional work and the important societal benefits that we could reap by more effectively and systematically investigating potential disease clusters and their causes. She also discussed an Issue Paper that NRDC released yesterday with the National Disease Cluster Alliance that documents 42 disease clusters in 13 states, which have either been confirmed by government agencies or academic researchers, or are under current investigation by federal, state or local health agencies. Those 42 cases are just the tip of the iceberg. And in all of those communities, and the hundreds of others around the country, people are experiencing the same pain, suffering, anxiety, fear, and loss that Trevor described in his own testimony. You can see Gina’s oral testimony here, (at 57:11) and read her full written testimony here.
Gina explained why Trevor’s Law is needed to help citizens confront the disease clusters in their communities; and why reform of the Toxic Substances Control Act (TSCA) is needed to ensure the safety of chemicals that are used in products and prevent creation of additional disease clusters in the future.
This was a valuable hearing on an issue that is both important, and, given all the many issues that Congress is dealing with (or at least pretending to deal with) easy to ignore. But those Senators who attended the hearing paid careful attention to all of the testimony, and they were serious, thoughtful, and constructive; things that cannot be taken for granted at congressional hearings. I think Trevor’s testimony is something that will be difficult to ignore and, if you witnessed it, impossible to forget.