Prostate Cancer Advocacy Alive in Washington

When Paul Sanders retired from Boeing at age 66, his doctor suggested he have a PSA blood test taken.

"What's a PSA?" Sanders asked.

PSA, or prostate specific antigen, is a blood test for evidence of prostate trouble. The American Cancer Society recommends all men get one annually starting at age 50, 45 if they are black or have a family history of prostate cancer. Sanders never would have known he had cancer if his doctor had not recommended the test.

Eleven years later, Sanders founded the Washington State Prostate Cancer Coalition. Among the coalition's many objectives is increasing awareness of prostate cancer and the methods of detecting it, PSA and DRE, or digital rectal exam. "Us men just don't know about PSA," Sanders said.

Early detection is key to successful treatment, and with prostate cancer's reputation as an old man's disease, age 50 is reasonable for most. A 50-year-old man's PSA should provide a baseline for normal prostate functioning, but sometimes, the first test is too late for men who develop cancer early. That's why advocates like Sanders say the ACS recommendations are off.

The coalition compiled a brochure containing a quote from a charter board member of the coalition who died at age 52, urging all men over the age of 35 to ask their doctors for a PSA. Urologists refused to take the brochure, claiming they had to agree with ACS guidelines. Volunteers hand-corrected 10,000 brochures--changing the 35 to 50.

The ACS guidelines were based on scientific literature and set by a national board of volunteers. Most prostate cancer occurs in men over the age of 65, and strong evidence for the benefits of earlier screening has yet to appear, said La Marco Mitchell, the community cancer control manager at ACS in Tacoma.

The International Us Too support group firmly disagrees with ACS and recommends testing at age 45 for all men. Us Too consists of prostate cancer survivors who feel their position is not taken seriously because they are backed up by emotion rather than science.

A room full of prostate cancer survivors at an ACS-sponsored conference in Washington, D.C. took an unofficial vote on the subject. "Who in this room agrees that you should take a PSA test at age 50 and above?" No one did. When the question became 40 and above, all the survivors agreed.

The exact age at which PSA testing should begin is an issue on which there is unlikely ever to be a full consensus, but in other areas, ACS, Us Too, and the coalition can agree.

The ACS organized a Puget Sound task force in the early 1990s to deal with prostate cancer, and Sanders, having recently left the Washington state legislature, became co-chair. Four years ago, the ACS asked Sanders to represent the area in Washington, D.C. as part of the National Prostate Cancer Coalition's annual conference.

It was there that Sanders began lobbying Congress for research money for prostate cancer. Cancer lobbyists educate their representatives about the disease and ask them to support legislation to increase the research budgets for the National Cancer Institute, the Center for Disease Control, and the defense department. So far their efforts have been successful.

"Bob Dole was the first one who came out on the Senate floor and said, 'I've got prostate cancer, and I'd like us to pass some money to NCI for prostate cancer.' That was $6 or $7 million, what, 15 years ago, and now that's up to $400 million," Sanders explained.

Congress demanded a five-year plan from the National Cancer Institute. The plan is up for renewal this year. "We lobby to stay on that course, steady as she goes," Sanders said, but there remains room for improvement.

Of funds requested for approved programs, only 30% are granted. The defense department has up to $300 million available to use for prostate cancer, but advocates' efforts have only raised the budget to $100 million. The Centers for Disease Control has a budget of around $20 million for prostate cancer, Sanders said.

"I'm looking for a Manhattan Project. We developed the atomic bomb in four years, put man on the moon in five years, so why can't we solve cancer?" Sanders questioned. He recognized the limitations of the federal government and said they are doing the best they can. He also realized the pharmaceutical companies can't do it all, either.

Lobbyists were told that in order to receive more monetary support for prostate cancer, they would need a lot of grassroots support. "The way to get grassroots support is to have a coalition in every state," Sanders said. After the ACS abandoned its task force, Sanders remained involved in lobbying and began to organize the Washington State Prostate Cancer Coalition.

Sanders learned the state of California spends $5 million annually for prostate and ovarian cancer as part of a five-year plan, and that figure was recently increased to $25 million. "What's my own state of Washington doing?" Sanders wondered. "Very little."

Members of the coalition introduced legislation in Olympia to form a blue ribbon campaign for prostate cancer. The campaign was broadened to be a comprehensive cancer control partnership for all cancers, and the department of health received a $131,000 grant from the Centers for Disease Control.

The partnership now boasts about 150 members from all over the state, working on all types of cancer. They are working on a state plan to submit to the Centers for Disease Control in June, when money to implement the plan will become available.

Locally, the coalition continues to educate the public about prostate cancer. They are organizing an awareness screening day on February 6 in Olympia when anyone who wants to can be screened for free with PSA and DRE by University of Washington Medical Center staff. The coalition especially encourages legislators to get screened.

"This is another way of getting the word out, because each one of those members of the House represents 120,000 people," Sanders explained. "If they put anything in their newsletters, then a lot of people would get a clue about prostate cancer screening."

(for Beginning Reporting)