Last week the FDA held an ODAC hearing to review the possible approval of Satraplatin as a drug available for the treatment of advanced prostate cancer. Anyone can apply to testify at the hearings. I testified along with several others representing the men dealing with advanced prostate cancer. Below is my testimony.

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My name is Kathy Meade. I am active with several cancer related groups, SPORE advocates, Patient Advocates In Research, The Virginia Cancer Action Plan which are general cancer groups and I am on the board of both the Virginia Prostate Cancer Coalition and National Alliance of State Prostate Cancer Coalitions. I am here today representing all cancer patients and especially prostate cancer men on behalf of Raise a Voice. I have no connection with the company producing Satraplatin.

My main reason to be here is to remind you why we are all here, the advocates, the FDA, the companies and the review committee, the welfare of men dealing with prostate cancer.

In reviewing materials for today’s presentation I found a quote from an ovarian cancer patient that exemplifies the struggle of all cancer patients dealing with end stages of a terminal disease and the difficulties of current treatments:

“After the first chemo I spent most of the week wondering how I would react, what would the side effects be like this time, would they get worse, will this treatment work, what if it doesn’t, etc. So far I’m doing okay, but trying to take my focus off of all these questions can be a challenge at times. I honestly feel like this should be old hat for me, and that I should be far more at ease and comfortable with the balance of undergoing treatment and my daily life. But in recently talking to other people who are living with cancer I’m reminded that it’s okay to be confused, angry, and even frightened. It’s just not okay to let it control the rest of your life.”

We need you to help men with prostate cancer find ways to not let progressive prostate cancer control the rest of their lives.

There are two men who I know would be here today to talk to you but unfortunately they are lost to us.

Tom Witte and Mike Rice were both tireless advocates for men with prostate cancer and doing whatever they could to lead the way to new, effective treatments that allow men to lead a good life with the time they have left. They both actively participated in clinical trials that they were eligible for. They also both gave the ultimate gift at the end of their lives. They donated their bodies for medical research, Mike to the warm autopsy program at the University of Michigan. Tom in Philadelphia. The pages I have passed to you, I hope will make them more real.

I got involved in cancer advocacy when my husband Bill was diagnosed with prostate cancer. Two years after this diagnosis he was diagnosed with a second primary cancer in his lungs. At that time he was treated with Taxol and Carboplatin. The treatment was difficult but he did what he had to do to stay alive for me as long as possible. The oncologist told me that he felt the major cause of his side effects was the carboplatin. I am hoping that with this new formulation and the oral administration some of the side effects that Bill experienced have been lessened significantly. I lost Bill in 1998.

We want and need more options for men at end stage disease or to keep them from reaching end stage. Our first choice would be treatments with minimal side effects but unfortunately that is not the case with most chemotherapies but if they show they extend lives it will be worth the extra time for at least some men if not all men. Unfortunately because of the side effects some men will bypass chemotherapy.

We are here today at the end point of the donations of the men who participated in the clinical trials, to review this new treatment for prostate cancer. If it is safe and extends the lives of men dealing with this devastating disease I urge you to approve Satraplatin.

 

First handout for the panel;

Tom Witte

Tom was active in the Virginia Prostate Cancer Coalition and was an inspiration to us all. Tom’s death at 57 years is a poignant reminder that the face of cancer is too often that of a loved one or valued friend. It is not simply a statistic. Indeed, from time to time, when we become weary in our battle against this disease, we only need to remember a father, friend or brother to re-energize our resolve to continue.

Tom’s words:

“I got prostate cancer in my early 40’s. Because we don’t check men under 50, I did not find I had it until after it had escaped my prostate and I started to have symptoms. I was age 47. Even then while a cure option was slight, I lost an opportunity for better and longer control because my Doctors were out of date. They told me to go away and come back when I had pain [REALLY BAD advice!].

Only after I came back, with cancer in most of my bones, did I realize the full cost of ignorance. I found there was a new guard of medical professional who specialize in the treatment of prostate cancer who are MUCH more effective than the old guard whom were treating me, [for which Prostate cancer was just one of the things they treated] and whom seem to spends their time not getting better but trying to defend out of date standards and their dismal statistics.

Knowledge is power.

In shifting from this path of ignorance and hopelessness (nothing works well), to knowledge and hope (these may not cure but can really help), I have significantly improved both my quality of life and length of life [my previous doctors offered I’d be incapacitated if not dead a year or more ago]. I am not cured but still living and working. I still have a future.”

If Tom had not lost his battle and if he was here today, I am sure he would be asking you to expand the options for men with prostate cancer and get the information about new treatments into the medical community as quickly as possible.

Second handout for the panel:

Michael J. Rice

Brigadier General Michael J. Rice, former Deputy Director for the Michigan Department of Military and Veterans Affairs, died peacefully July 10th, 2007, at the age of 65 after an eleven year running gun battle with advanced prostate cancer. General Rice’s distinguished career with the Michigan Army National Guard and Department of Military and Veterans Affairs was highlighted by his many command and staff assignments and expertise in inter-governmental coordination and legislative affairs. He coordinated implementation of Michigan’s $172 million Vietnam Veterans Bonus Program in 1976. General Rice coordinated the transfer of the State Veterans Homes and the Michigan Veterans Trust Fund into the Department. He built the organizational framework for the Department’s veterans programming and in 1996 was appointed Michigan’s Asst. Adjutant General for Veterans Affairs. A Wayne State University graduate, his professional education was extensive – including the United States Army War College and the Harvard University JFK School of Government Program for Executives in State and Local Government. General Rice received an additional federal appointment in July 2000 as Michigan State Director for the Selective Service System – overseeing the agency’s mobilization readiness, recruitment and training of Michigan Draft Board members and concurrently served in that capacity until he retired from state government in 2002. General Rice’s skillful battle with prostate cancer and his untiring advocacy for cancer patients gained him local, state and national recognition. He served on the University of Michigan Prostate SPORE (Special Programs of Research Excellence) Operating Committee and External Advisory Board – a special National Cancer Institute program to expedite promising cancer research. General Rice was elected to the Michigan Cancer Consortium Board of Directors in 2006 and had previously served on the Consortium’s Prostate Cancer Action Committee for several years. He was selected by the National Cancer Institute to be a member of the Consumer Advocates in Research and Related Activities (CARRA) Program since 2002. He was a charter member and immediate past-president of the Prostate Cancer Coalition of Michigan, a non-profit corporation to combat prostate cancer through education and outreach. General Rice was also a charter member and director of the National Alliance of State Prostate Cancer Coalitions. Active locally, General Rice served as a steering committee member and mentor for the Mid-Michigan Prostate Cancer Support Group assisting men and their partners in coping with the disease, promoting screening and serving on the Sparrow Health System’s annual Cancer Survivorship Symposium and the Ingham Regional Medical Center’s Prostate Cancer Committee. Mike presented frequently in professional and public forums on cancer survivorship and patient advocacy.

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Satraplatin was not approved but all the people who testified on behalf of the men dealing with prostate cancer know that we did did everything that we could.

If you have the opportunity to speak at a meeting or just sit the audience you will learn to understand the system. Maybe you will even gain some insight on how to improve the system.

That is the first step to becoming an advocate.