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by Claremary P. Sweeney   |   March 5, 2019

The Life-changing Difference Research Funding Made for My Husband

Charley and I just returned from our annual trip to Washington D.C. for the ZERO Prostate Cancer Summit. Charley is an 11-year prostate cancer survivor as are the others who attend these meetings every year with their advocates. I’m an advocate. Some family and friends who were caretakers come alone. Their loved ones didn’t survive this disease but they want to make sure others have a better chance.

Sunday was for networking and socializing. Monday was filled with panels, discussion groups, and featured speakers. ZERO makes sure we are brought up-to-date on every resource available in fighting cancer.

Tuesday is the day we all give back. It’s when we storm the Hill. Appointments with our Senators and Representatives are set up for us to meet, tell our stories, answer questions and make the ASK. Our ASK this year is for $110 million to be included in the medical portion of the National Defense Budget for prostate cancer research. This is separate from the research being done by the National Institute of Health. The research from these monies goes to more innovative proposals that possibly would not be considered in the NIH budget. And this is where it gets personal.

Charley just completed a 5-year trial using two of the drugs developed because of these funds: Enzalutamide (Xtandi) and Abiraterone (Zytiga). They are cutting edge drugs which are now increasing survival rates by years. In Charley’s case, they are the drugs which have taken him from a PSA of 48 to a PSA of 0.01. He is in remission and the cancerous lymph nodes and bone tumors have disappeared. We know this because the study required Charley to fly to Baltimore’s Johns Hopkins Medical Center every 28 days for blood tests, bone scans and MRIs. The study involved 1,500 men at Cancer Centers throughout the US. On one arm of the study were those taking Xtandi alone and on the other arm, those taking Xtandi and Zytiga. The results of the study show no appreciable difference and therefore either drug is effective in placing men into remission.

Only 3-5% of men become involved in clinical studies because it is time consuming, sometimes grueling, and costly. A months worth of Xtandi here in the USA is $7,450.00 a month. Zytiga is $10,165.56 but the most common generic version is around $2,655.28 a month. Sometimes the cost of drugs is covered in the study and sometimes they are not. Zytiga was not. And there are no guarantees, as the side effects must be taken into account. One of the side effects for Charley is tiredness and we are noticing memory issues. Those side effects and others are documented and noted by the drug company in marketing to patients.

In the beginning, Charley and I had to navigate through the myriad of issues that are part and parcel of a cancer diagnosis. But then, the hospital connected us to ZERO and they helped in whatever way they could. Sometimes they found funds for Charley’s airfare. Sometimes they helped find grants for drug costs. But they were always there to answer questions and provide support when we had nowhere else to go.

Last Tuesday we met with our Senator, Jack Reed. His senior policy advisor, Jill Boland, brought us to where he was in a hearing. In case you didn’t realize, the Hill was crazy with hearings on Tuesday; gun control, drug costs, national emergencies, and Michael Cohen.But Jack left the hearing to speak with us. He is important in guaranteeing ND funding because he is the ranking member on the Armed Services committee and serves on the Appropriations Committee. After Charley made the ASK, Senator Reed voiced his concerns about this funding being appropriated for other things such as weapons and walls. I told him, having been in the Army, I understood the need for our soldiers to be armed with the best weapons. Jack gave me a fist bump. He was a graduate of West Point and served in the army from 1971-1979. I went on to say that we needed to take care of those who served once they are home.

And that is the crux of keeping this funding in the budget. I was preaching to the choir. He was called back into the hearing but I know he’ll use his voice for us just as I know our meetings with legislative assistants Jarad Stout, Anna Esten, and Becca Flikier from Senator Whitehouse’s and Representative Langevin’s offices will result in a vote to do the right thing.

And now we’re home. It’s snowing and I’ve taken some time out from editing my latest South County Murder Mystery, Last Sermon for a Sinner, to write this blog post. The fifth mystery in the series, Last Castle in the Sand, will center around doctors and clinical studies. I have an abundance of knowledge and experience to tap into for background.

Charley and I appreciate every day we’ve been given together. He has enjoyed time with his grandchildren: exploring the Boston Museum of Science with his son, Ben, and grandson, Henry; taking his princess granddaughter Hadley to Disney on Ice; watching his Grandson Dax take hip hop lessons and be ball boy for a basketball game at URI. He goes to their soccer games and school performances. He reads and plays games with them and takes them out for lunch. He’s watching them grow up – something he was not supposed to be around for from his prognosis nine years ago.  And the world is better for having him in it.