As Us TOO International turns 20

In early 1990, Dr. Gerry Chodak — a well-known Chicago-based urologist and then professor of urology at The University of Chicago — wrote a letter to his prostate cancer patients. He said that some of them were interested in starting a prostate cancer support group. From such small beginnings …

In February that year, the first meeting of what was to become Us TOO International was held at Dr. Chodak’s office, with 22 attendees. On June 8, 1990, Us TOO was issued a certificate from the Secretary of the State of Illinois for its incorporation. On November 7, Us TOO was officially recognized as a 501(c)(3) organization under the Charitable Trust Act and the Illinois Solicitation Act.

Today, Us TOO International officially celebrates its 20th birthday. It has grown from such small beginnings to have nearly 300 chapters across America and 20+ chapters in other countries around the world. (There are still three states in America without an Us TOO chapter; we shall permit them to remain nameless.) Representatives of Us TOO and representatives from many other prostate cancer organizations will join together, today and tomorrow, at the Hyatt Regency O’Hare outside Chicago, to help Us TOO enjoy it’s 20-year, very prostate cancer-specific, survival, with an international summit, symposium, and celebration.

Throughout the past 20 years, it can be argued that men have failed to have the same degree of impact on the treatment of prostate cancer as women have had on the treatment of breast cancer. And there is some truth to this argument. There are certainly too many different prostate cancer organizations, and we haven’t all played well together in the sand pit over time. Too often, we have squabbled over the trivia and lost sight of the big picture. But in recent years Us TOO has become one of the organizations that has recognized the opportunities and the value of greater collaborative effort among the various prostate cancer research, advocacy, and support organizations.

Hopefully the meeting in Chicago, starting today, will be as important to moving forward as was a meeting 13 years ago in Las Colinas, Texas, that led to the formation of the National Prostate Cancer Coalition (now ZERO — The Project to End Prostate Cancer).  Why? Because there are still six critical factors that we must focus on with laser-like intensity if we are to convert prostate cancer from a source of fear into an easily manageable condition for the majority of men:

  • Education — for every male, about his risk for prostate cancer and how best to manage that risk over time.
  • Early detection — in ways that will allow each patient to identify, seek out, and obtain the form of management most appropriate for his personal situation.
  • Truth — about the treatments and other care options that are available and their best application to the patients that need help.
  • Research — that will lead to much better diagnostic tests and much better medical care over time.
  • Support — for men and their families as they learn about and deal with prostate cancer and the ways it affects them.
  • Advocacy — for investment in education, early detection, research, and support.

As we move into the next 20 years of prostate cancer support, education, and advocacy, we need to work together to focus on these six critical factors. We need to get beyond the constant squabbles over when to give PSA tests and what they mean. We need to remember that what worked for each of us as an individual may not be appropriate for the next patient in the line. We need to understand that the newest “hot” treatment isn’t necessarily the best. And above all we need to remember how we felt the very first day we were told we had cancer — and just how little we then knew ourselves.

The broader patient support and advocacy community is coming of age. In addition to being the 20th anniversary of Us TOO, this year was also the 30th anniversary of the Alzheimer’s Association, the 25th anniversary of the National Organization for Rare Disorders, and the 2oth anniversary of the International Myeloma Foundation. These organizations were all founded as true patient support and advocacy organizations, not as organizations run primarily to raise money to support research.

Raising money to support research is an admirable and important function, make no mistake, but helping each newly diagnosed patient as they learn how to negotiate a possibly life-threatening diagnosis is equally admirable and just as critically important. Over the next 20 years, we need to take what organizations like Us TOO do to a new level so that those of us who meet together again in 2030 will barely be able to recognize the outcomes of the efforts we start to make today.

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