National Prostate Cancer Coalition Testimony of Heather French Henry Miss America 2000 Submitted to the Senate Appropriations Subcommittee on Defense May 5, 2004
Mr. Chairman and distinguished members of the committee, thank you for the opportunity to share my thoughts. My name is Heather French Henry, and I was crowned Miss America in 2000. I am here today on our behalf of my husband, my children and families all over America who have been touched by prostate cancer.
I was pregnant with our second child when I found out that my husband, Stephen, then the Lieutenant Governor of Kentucky, had prostate cancer. In fact, I was two weeks away from my delivery date when he sat me down to tell me about his diagnosis. As a young married couple, the thought of prostate cancer or any form of cancer, was not even in our wildest imagination. After all, Stephen was the picture of health for a forty-nine year old man. He was active. He played basketball. He could even out run me on his worst day!
Ironically, my husband is a physician. One might think that doctors should be on top of their health status! However, one peculiar night, I discovered Steve in pain, sitting on the steps holding his hand to his chest. Usually not one prone to dramatics, I was immediately concerned. Stephen went to the hospital and began a long stream of physicals over a period of two weeks. One physical after another showed my husband in good health until the day he received the results of a prostate-specific antigen (PSA) test. Only because of a simple unrelated chest pain did my husband take the initiative to get tested and find out about his PSA level. Had he not gone to the doctor at all, his diagnosis may still be unknown. Prostate cancer is a silent killer, and men must be encouraged to be vigilant in detecting it.
Following the results of his PSA test, we began to wonder if Stephen’s family had a history of the disease. After a call to his mother, we found out that his father had prostate cancer later in his life. If a man has one close relative with prostate cancer, his risk of the disease doubles; with two relatives, the risk increases fivefold. Therefore, it should have been no surprise that Stephen’s chances of developing the disease were significant – but it was.
Once I found out about my husband’s prostate cancer I couldn’t help but think, as an eight-month pregnant woman of 28, “my husband has CANCER!” I felt terrified which was magnified a thousand times by my pregnant condition. The hardest part was that we had to be silent about his condition because of the media. If prostate cancer was something that was widely understood and recognized, such as breast cancer, I don’t feel that we would have had to be so cautious. However, because of the great misunderstanding and lack of knowledge the media and the public have about the disease, we had to strategize about how to deal with this situation, not only personally but publicly.
I certainly was in no condition to deal with all of this, but prostate cancer doesn’t wait for the “right” time. It added so much stress to my already aching mind and body that I feared it might affect my delivery. Fortunately, it didn’t, and we are once again a happy family.
Two days before he had surgery, Stephen held a press conference for all of the Kentucky media. It was the longest press conference in which I had ever participated. It became evident there was a lack of knowledge that even the press had about the seriousness of prostate cancer. We spent almost two hours describing prostate cancer, how it affected us as a family and how it could be treated. So much had to be explained and we wanted everyone on the same page. The last thing we wanted was for the press to speculate about Steve’s cancer, his job, or even his life. We held the press conference to create awareness, educate and add hope to those families out there that may be struggling with prostate cancer. The next day we left for Johns Hopkins Medical Center in Baltimore.
Stephen decided after educating himself and seeking the advice of friends and colleagues that he would choose the most aggressive route of surgery. Getting mixed views about timelines for surgery and knowing time was no friend to any cancer, Stephen wanted to act quickly. Three weeks after our daughter was born Stephen underwent surgery. Coupled with the fact that I had just given birth and really needed to have the baby with me, this was an extremely hard time for our family.
I am usually a very strong woman emotionally and spiritually but not the day of Stephen’s surgery. When we arrived at the hospital I was immedialty told I could not take my infant daughter into the surgical wing. So there I was stuck in the lobby of one of the largest hospitals in the country with a newborn baby, a husband with cancer, and I was mentally lost. All I could do was sit and cry silently in the lobby while people walked by adding nods of compassion. I had no idea how the surgery would go. Reinforcing the lack of public discussion on the disease, no one could give us a clear story about the most affective treatments. What if the surgery didn’t work? What if the cancer had spread? What if I was going to lose the love of my life and be left alone with two children? What if my children had to grow up not knowing what a wonderful man their father was?
No one knows when his or her time on earth is going to end, and I was not ready for Steve’s name to be called. I eventually called a friend to fly up to Baltimore to pick up my daughter after Stephen’s surgery was over. But my despair continued.
Even though the doctor seemed hopeful, my heart felt bleak. All that kept ringing through my head was the doctor describing about how prostate cancer evolves and changes with time and that he could make no predictions because more research needed be done to become more familiar with the nature of prostate cancer. It was nothing short of a nightmare for me. Ironically, between the two of us, Stephen handled it much more gracefully than I did. Four days after a successful surgery, we returned to Kentucky.
I will never forget my husband’s reaction to me asking if he would like a wheel chair for the walk through the airport. His pride was clearly hurt. Surgery was one thing, but the aftermath post operation is quite another. Stephen was to keep his catheter in for a few weeks, and that made the flight home quite memorable. The look on his face when I asked to tie his shoes was a clear indication that he did not want people to know or feel sorry for him. This outraged me. It concerned me that the masses didn’t know more about prostate cancer and that my husband, or any man, could not feel comfortable dealing with his condition. It was one thing to talk about having prostate cancer but quite another to show people up front a post-operative face. It was not an easy flight, nor were the next weeks at home trying to make my husband rest. Unfortunately, his demeanor at that time reflects the overall attitude of many men and society: a reluctance to openly address prostate cancer and the need to be screened.
Life didn’t really seem to show a ray of hope to me until his first post-operative PSA test. His results were excellent! I finally breathed a sigh of relief. Steve was fortunate. He had caught his prostate cancer early, but others we know have not been so lucky. Prostate cancer is the most commonly diagnosed cancer in men, accounting for 33 percent of all cancer cases in men. Like Stephen, approximately 230,000 men will learn they have prostate cancer in 2004. Many of those diagnosed will be in their 40s and 50s. Roughly 30,000 will die from the disease. As we have seen, those with a family history of prostate cancer are more susceptible to the disease. Also, veterans and others exposed to defoliants and African American men remain at higher risk. Currently, there is no cure for advanced or metastasized prostate cancer. I feel that because my husband is a doctor he was able to make wise decisions about his cancer. However, not everyone who currently has or will be diagnosed with prostate cancer is a doctor or will even have access to a doctor. The reason I am here today sharing my personal story with you is to encourage you to make an appropriate investment in prostate cancer research to help find a cure. We hear slogans everyday about “races for the cure” but the eradication of prostate cancer will never see its day unless it is talked about and taken seriously with proper funding for research. That’s why, my husband and I have partnered with the National Prostate Cancer Coalition (NPCC). We know that an investment in research leads to better prevention, detection and treatment - and that greater understanding and awareness of the disease leads to hope - hope that the millions of men who will be diagnosed with prostate cancer have the chance at a long healthy life with their families. Among men, prostate cancer is rarely discussed, and when it is, it’s done “behind closed doors.” My own husband was not even fully aware of his family history. Prostate cancer is not something to be ashamed of; it is a disease that needs to be recognized. Just as breast cancer has become a common dinner table topic, so should prostate cancer.
I have worked for many years with Vietnam veterans who have prostate cancer as a result of Agent Orange exposure but I never thought I would encounter it in my family. Having long been a champion of veterans’ issues, including the work done through my own foundation, I have seen the burden this disease places on those who have protected our freedom. The Department of Veterans Affairs (VA) estimates that there are roughly 23.5 million male veterans living in the U.S. That means approximately 3.9 million veterans will be diagnosed with prostate cancer. The Veterans Health Administration currently estimates that nearly 5,800 patients in its system are diagnosed with prostate cancer each year. This nation must do all it can to keep these men from harm’s way, after they have done the same for all Americans. What I am asking from you today is to take care of the men who served in uniform, past present and future.
The Department of Defense (DoD) estimates that the direct health care costs of prostate cancer on the military are expected to be over $42 million in FY04. Nearly 85% of the current 1,465,000 serving in America’s military are men. That means that about 200,000 servicemen will be diagnosed with prostate cancer - without additional consideration of service related environmental factors that may increase risk of the disease. The DoD refers to itself as America’s largest company; it must protect its employees from a killer that will affect 14% of its workforce.
Whether in battle or peacetime, the lives of men all over this country depend on your decisions. You have the unique opportunity to provide a brighter future for millions of men and families through prostate cancer research. With proper funding we can find a way to end the pain and suffering caused by prostate cancer
To properly fight the war on prostate cancer for families like mine, your committee must appropriate $100 million for the DoD Congressionally Directed Medical Research Program’s (CDMRP) Prostate Cancer Research Program (PCRP). As stated in its FY97 business plan, PCRP needs at least $100 million to conduct human clinical trial research. My husband chose to have a radical prostatectomy, one of several forms of treatment available for prostate cancer. Yet, as with all current primary treatments for the disease, there are many side effects. Without $100 million, the program is unable to test new treatments and thus get new products to patients that may not impair the quality of their lives. Without such investment, the pipeline remains closed, meaning that valuable prostate cancer research remains stuck in laboratories instead of at work in clinics.
Thanks to your leadership, CDMRP has become the gold standard for administering cancer research. Prostate cancer advocates and scientists throughout this nation have long applauded the program and its peer and consumer driven approach to research. PCRP is a unique program within the government’s prostate cancer research portfolio because it makes use of public/private partnerships, awards competitive grants for new ideas, does not duplicate the work of other funders, integrates scientists and survivors and uses a unique perspective to solve problems. Its mission and its results are clear. Each year, the program issues an annual report detailing what it has done with taxpayer dollars to fight prostate cancer. PCRP’s transparency allows people like us and others affected by prostate cancer to clearly see what our government is doing to fight the disease.
The PCRP structure is based on a model developed by the National Academy of Sciences’ Institute of Medicine. Its mission and its philosophy for awarding research grants reflect that of DoD’s Defense Advanced Research Projects Agency (DARPA). The DARPA model, performance through competition and innovation, was praised in President Bush’s FY05 budget. This DARPA-esque approach to cancer research allows PCRP to identify novel research with large potential payoffs and to focus on innovative methods that do not receive funding elsewhere.
One of the strongest aspects of the program is PCRP’s Integration Panel. The panel is composed of those who know prostate cancer research and the issues facing it: scientists, researchers, and prostate cancer survivors, just like Stephen. This peer and consumer driven model allows the program to select grants based on merit and their translational benefit while incorporating the views of those who need research the most, prostate cancer patients. No other publicly funded cancer research entity effectively brings together all those with a stake in curing prostate cancer.
This committee requested last year that DoD, in consultation with the Institute of Medicine, evaluate collaborations with the private sector (Senate Report 108-087). Both NPCC and I agree. Through public-private partnerships, prostate cancer researchers can work collectively and strategically to produce new preventives, diagnostics and treatments to improve the quality of life for prostate cancer patients like Stephen. Prior to your directive, NPCC began discussing methods for public-private partnerships when it convened, along with the National Cancer Institute and DoD, the Prostate Cancer Research Funders Conference in 2000.
The Prostate Cancer Research Funders Conference brings together representatives of all the government agencies that fund prostate cancer research along with their counterparts in the private sector. Participants include NIH/NCI, DoD, the Veterans Health Administration, the Centers for Disease Control and Prevention, the Food and Drug Administration, Canadian and British government agencies, private foundations/ organizations and representatives from industry. Members of the Conference have come together to focus on shared objectives and address commonly recognized barriers in research.
As a co-convener of the conference, PCRP plays an important role in shaping its priorities. Currently, federal agencies participate voluntarily, but they can opt in or out based on the tenure of executive leadership. For the conference to be successful, federal agencies engaged in prostate cancer research should, in our opinion, be required to participate, and we ask for your leadership to make that happen. Moreover, Congress must also offer sufficient incentives for the private sector to participate. Incentives that do not compromise the autonomy or integrity of PCRP’s peer review structure. I firmly believe that a collaborative, multifaceted approach to prostate cancer research can bring about better results in a more timely fashion. Mr. Chairman, we have done remarkable work and are making progress. Public-private collaboration and new scientific discoveries are moving us toward a better understanding of how prostate cancer kills, but, for our work to be worthwhile, it must be translated into tangible goals and results for patients. The War on Cancer must be funded appropriately so researchers can get new drugs to the patients who need them. For this to happen PCRP needs $100 million to fund human clinical trials research.
On behalf of my entire family, prostate cancer patients everywhere, and NPCC I thank you for your time. Thanks to your leadership, I will one day be able to tell my children that a disease their daddy has is no longer a killer of men.
