Talking to Members of Congress About Cancer Issues

WASHINGTON—“Meeting with members of Congress to push an issue can seem intimidating, but the key is to remember that legislators are people, too, and to treat the encounter as the beginning of a relationship,” Robin Carle said at the 1999 Kidney Cancer Association (KCA) annual convention.

Ms. Carle, a consultant and former vice president of the Pharmaceutical Research and Manufacturers Association, spoke the day before about 50 patients, family members, friends, and health care providers went visiting on Capitol Hill.

“Every day in Congress is busy,” she noted, “and members are always awash in a tide of issues. It’s a numbers game for them, because they have to keep an eye on how their actions might translate into votes. So the smaller your issue or the smaller your group, the greater the chance you’ll get squeezed out to the edge.” The goal, then, is not to fall off the edge, she said.

Walking the edge effectively involves practical measures, as well as some social savvy. The first step is to get a meeting. To do this, she said, write the request in a letter of introduction that is no more than one page long, with key points bulleted.

“If you get the meeting, that’s good—but it’s only the beginning,” she said. “Now, you must think about what you’re going to cover during the meeting.”

Ms. Carle advised the audience not to take up to much time with details. “Congressional members are likely not conversant in your area,” she said. “It’s best to bring them up to speed, concisely, on the import of your issue.”

If there is a level of emotion involved, convey that as well—“because the last thing you want is for your legislator to leave the meeting thinking it was a courtesy call. In kidney cancer, for instance, show that the issues are deadly and important,” she said.

Dealing With Staff

Ms. Carle reminded the audience that a legislator’s office does not consist of the legislator alone. “There’s a whole staff to help,” Ms. Carle said, “and anyone with an issue should take advantage of that. Building a relationship with the member’s staff is critical.”

If you meet with the legislator, notice who’s sitting around him or her, she said. If you don’t meet with the legislator, don’t be miffed, since the legislative director may be the one with the time to pay attention to details. Similarly, if you’re trying to get the attention of a committee, don’t feel you have to meet with the committee director; the staff can be helpful.

If you were scheduled to meet with a legislator and suddenly find yourself meeting with a staffer, “it’s not something to take personally,” Ms. Carle said. “Maybe a vote was called. That’s just the way the process works.”

It’s also important not to give the impression you’re in a hurry when you meet with someone on the Hill. “They’re glad to see you,” she said. “They’re people-people; they ran for office. Don’t feel like you’re an imposition. You got on their schedule, and a lot of people don’t. So they want to see you.” But she cautioned that “congressional staffs tend to be young and overworked, and at times they can seem arrogant.”

After the meeting, she said, remember to follow up with a letter that will provide some of the detail there was no time to convey at the meeting. Consider calling or paying another visit.

“If you meet and then disappear off the screen, you’ve lost the opportunity and the reason you came to town,” she said. “If they expect to see you again, or if you meet with their staff regularly, they’re more likely to pay attention.”

After Ms. Carle’s speech, the audience members broke up into groups to go over the points they wanted to convey at their legislative meetings the next day, including increased funding for the National Cancer Institute.

In a briefing paper circulated at the meeting, the Kidney Cancer Association noted that although NCI’s budget increased by about 15% last year, only a 2% increase was proposed for the year 2000. “This is not enough,” the Association stated. “Millions of Americans have cancer, and millions die from it. Some of them are kidney cancer patients. We expect our government to look after the interests of its citizens.”

The Association also expressed support for legislation to enable Medicare patients to participate in clinical trials. The average age of kidney cancer patients is 62, and most are covered by Medicare. The group opposes any legislation to control drug prices, reasoning that such restrictions would reduce private investment in biomedical research.

The Association leadership warned members who went visiting on the Hill they might be told “There is no money” or that “Budget caps prevent enacting this legislation.” Do not accept these excuses, the primer said. “There was plenty of money to bomb Serbia, and many more will die from cancer than from atrocities, awful as they were.” As for budget caps, the primer called these “a creature of Congress that can be modified at any time by Congress.”