Political and social forces are shaping a new breed of cancer activist. Groups that earned their reputations for passive, measured, and cooperative approaches are taking a cue from more aggressive special interest groups and evolving into vocal and politically astute constituencies. How influential they become remains to be seen. Where a decade ago fewer than a half dozen organizations composed of cancer patients and their families existed to provide emotional support and lobby for funding, today there are more than 15 national groups.
Aggressive Tactics Their demands are strikingly similar to those of the activist groups that have rallied behind AIDS patients. They want increased research funds, expedited drug approvals, expanded access to experimental treatments, and protection from insurance and employment discrimination. Their tactics for achieving those goals are also similar. • In 1990, for example, some activists planned to draw together cancer patients, their families, and members of the research community for a march and rally on the steps of the U.S. Capitol, hoping to draw media attention to their demands by having participants lie on the steps of the building. The plan was ultimately aborted. • On Mother's Day, a coalition of three San Francisco-area breast cancer groups plan to march on the state 528
capitol in Sacramento to demand that lawmakers focus their attention on support for breast cancer research and related social initiatives. • A "summit" was held last month in New York City drawing together women representing breast cancer groups and feminist organizations.
Coalition Building This summit, the third meeting of its kind, was held to lay the groundwork for building a "cancer advocacy coalition" replete with a Washington, D.C., office equipped to organize marches and demonstrations, issue nationwide "calls to action" involving media and political lobbying, and create a network
that can "get the word out fast" when funding and legislative issues arise. "We've seen these tactics work for other people. We've seen that AIDS activists are getting things done. Now, cancer patients are becoming aggressive consumers and demanding to be part of the decision-making process," said Sharon Green, executive director of "Y-ME," the Homewood, UL-based National Organization for Breast Cancer Information and Support. "There is no question that there is going to be a more extreme form of advocacy, the question is what form and to what extent it will take. These events are no longer designed solely to raise funds; we are out there to make a strong public statement," Green added. Growing frustration with the pace, nature, and extent of federal support for research is prompting relatives, friends, and in many cases, cancer patients themselves to build large national organizations out of what often begins as living room meetings between a handful of like-minded individuals.
Shocked
Beverly Znkarimi
Such was the case with Gertrude Swerdlow and Irving Swerdlow, Ph.D., both retired economics professors who, after losing their son Paul to adult undifferentiated leukemia, were shocked that cancer research was being allocated only a fraction of 1% of the federal budget. Five months after forming a local cancer support group, Gertrude Swerdlow made a trip to Capitol Hill to secure support from a leading member of Congress—who had been instrumental in garnering federal support for AIDS research—to help build a nationwide network. She left the lawmaker's office with "no money, just moral support and advice to come back when we could muster a list of 10,000 members."
Journal of the National Cancer Institute
Downloaded from http://jnci.oxfordjournals.org/ at Georgetown University on July 12, 2015
Patient Activism: Cancer Groups Become Vocal and Politically Active
News News
FDA Targeted For Beverly Zakarian, founder of the Brooklyn, N.Y.-based Cancer Patients Action Alliance, the target is the Food and Drug Administration, which controls both approval of and access to new drugs and therapies. "Cancer patients are members of a special interest group by definition, and of an advocacy group out of necessity. ADDS patient groups were the first to bring life-threatening diseases out of the closet. Cancer patients comprise a very large and influential group, and we, too, are learning to act like one," Zakarian said. likewise, National Kidney Cancer Association President Eugene Schoenfeld, PhX).,—who is himself battling kidney cancer—pointed out that recent advances in cancer prevention and treatment are fueling rising expectations from cancer patients and their families who are now more likely to "demand" that their physicians help them "survive cancer, cure it, or live with it for a much longer time." "The children of the 1960s are now older and are entering the cancer Vol. 83, No. 8, April 17, 1991
patient population. These same people who protested the Vietnam war are now getting cancer and they are much more likely to challenge the status quo of both cancer care and cancer politics," Schoenfeld asserted. Founded by families in 1970, the Washington, D.C.-based Candlelighters Childhood Cancer Foundation initially functioned as a "self-help" group lobbying federal lawmakers for increased childhood cancer research funding. Today, with more than 400 chapters and 33,000 members nationwide, the group is often called on to provide congressional testimony and has been active in the Family and Medical Leave Act and legislation dealing with insurance discrimination. It is also in the process of forming a "long-term cancer survivor" network. "We realized that we could only make a tremendous difference if we gathered together and were more vocal," said Candlelighters Executive Director Julie Sullivan. "Those who yell loud and long have set the example for many cancer groups to get out there and say we want our share too," Sullivan added. Even the American Cancer Society— the nation's oldest and best established non-profit cancer group—sees the changing course of cancer activism as "a healthy thing."
Requires Vigor "We'd all like to see more money going into cancer research and there are a variety of approaches serving to attract attention to the issue. Our job as proponents of this cause requires us to be as vigorous and forthright as we can be," said Alan Davis, ACS vice president for public affairs. "This change in tactics and strategy is a good thing and a very important development," said Fitzhugh
Julie Snllhran
Mullan, M.D., president of the National Coalition for Cancer Survivorship. "The key issue is consumerism in healthcare." But will so many fragmented groups focusing their efforts on specific cancers or specific cancer issues be less effective than a unified front with a consensus on both agenda and strategy? The answer may lie with veteran AIDS activists who continue to test the limits of "disease advocacy."
Coalitions Are the Key "Coalitions are the key, and it's important to be consistent with tactics," said New York City playwright and AIDS activist Larry Kramer, who founded the AIDS Coalition to Unleash Power (ACT-UP). "Whether it's one person or a thousand, any pressure is useful. You should never worry about diluting the message because often one person can accomplish what a thousand can't," Kramer said. — By Lou Fintor
NEWS 529
Downloaded from http://jnci.oxfordjournals.org/ at Georgetown University on July 12, 2015
Today, 5 years later, Swerdlow has done better than that: her DeWitt, N.Y.-based non-proQt Families Against Cancer Terror, Inc., publishes a regular newsletter, has been featured on network television and in syndicated newspaper columns, and claims more than 100,000 members. "Cancer has always been a skeleton in the closet, but we who know and understand cancer have a responsibility to educate our elected officials and make them more responsive to our needs. Unless we demand it, it's not going to happen," Swerdlow said. "I can call out hundreds of volunteers at any one time who are ready to bring about a new and reinvigorated national cancer policy," Swerdlow added.
Aggressive Tactics Their demands are strikingly similar to those of the activist groups that have rallied behind AIDS patients. They want increased research funds, expedited drug approvals, expanded access to experimental treatments, and protection from insurance and employment discrimination. Their tactics for achieving those goals are also similar. • In 1990, for example, some activists planned to draw together cancer patients, their families, and members of the research community for a march and rally on the steps of the U.S. Capitol, hoping to draw media attention to their demands by having participants lie on the steps of the building. The plan was ultimately aborted. • On Mother's Day, a coalition of three San Francisco-area breast cancer groups plan to march on the state 528
capitol in Sacramento to demand that lawmakers focus their attention on support for breast cancer research and related social initiatives. • A "summit" was held last month in New York City drawing together women representing breast cancer groups and feminist organizations.
Coalition Building This summit, the third meeting of its kind, was held to lay the groundwork for building a "cancer advocacy coalition" replete with a Washington, D.C., office equipped to organize marches and demonstrations, issue nationwide "calls to action" involving media and political lobbying, and create a network
that can "get the word out fast" when funding and legislative issues arise. "We've seen these tactics work for other people. We've seen that AIDS activists are getting things done. Now, cancer patients are becoming aggressive consumers and demanding to be part of the decision-making process," said Sharon Green, executive director of "Y-ME," the Homewood, UL-based National Organization for Breast Cancer Information and Support. "There is no question that there is going to be a more extreme form of advocacy, the question is what form and to what extent it will take. These events are no longer designed solely to raise funds; we are out there to make a strong public statement," Green added. Growing frustration with the pace, nature, and extent of federal support for research is prompting relatives, friends, and in many cases, cancer patients themselves to build large national organizations out of what often begins as living room meetings between a handful of like-minded individuals.
Shocked
Beverly Znkarimi
Such was the case with Gertrude Swerdlow and Irving Swerdlow, Ph.D., both retired economics professors who, after losing their son Paul to adult undifferentiated leukemia, were shocked that cancer research was being allocated only a fraction of 1% of the federal budget. Five months after forming a local cancer support group, Gertrude Swerdlow made a trip to Capitol Hill to secure support from a leading member of Congress—who had been instrumental in garnering federal support for AIDS research—to help build a nationwide network. She left the lawmaker's office with "no money, just moral support and advice to come back when we could muster a list of 10,000 members."
Journal of the National Cancer Institute
Downloaded from http://jnci.oxfordjournals.org/ at Georgetown University on July 12, 2015
Patient Activism: Cancer Groups Become Vocal and Politically Active
News News
FDA Targeted For Beverly Zakarian, founder of the Brooklyn, N.Y.-based Cancer Patients Action Alliance, the target is the Food and Drug Administration, which controls both approval of and access to new drugs and therapies. "Cancer patients are members of a special interest group by definition, and of an advocacy group out of necessity. ADDS patient groups were the first to bring life-threatening diseases out of the closet. Cancer patients comprise a very large and influential group, and we, too, are learning to act like one," Zakarian said. likewise, National Kidney Cancer Association President Eugene Schoenfeld, PhX).,—who is himself battling kidney cancer—pointed out that recent advances in cancer prevention and treatment are fueling rising expectations from cancer patients and their families who are now more likely to "demand" that their physicians help them "survive cancer, cure it, or live with it for a much longer time." "The children of the 1960s are now older and are entering the cancer Vol. 83, No. 8, April 17, 1991
patient population. These same people who protested the Vietnam war are now getting cancer and they are much more likely to challenge the status quo of both cancer care and cancer politics," Schoenfeld asserted. Founded by families in 1970, the Washington, D.C.-based Candlelighters Childhood Cancer Foundation initially functioned as a "self-help" group lobbying federal lawmakers for increased childhood cancer research funding. Today, with more than 400 chapters and 33,000 members nationwide, the group is often called on to provide congressional testimony and has been active in the Family and Medical Leave Act and legislation dealing with insurance discrimination. It is also in the process of forming a "long-term cancer survivor" network. "We realized that we could only make a tremendous difference if we gathered together and were more vocal," said Candlelighters Executive Director Julie Sullivan. "Those who yell loud and long have set the example for many cancer groups to get out there and say we want our share too," Sullivan added. Even the American Cancer Society— the nation's oldest and best established non-profit cancer group—sees the changing course of cancer activism as "a healthy thing."
Requires Vigor "We'd all like to see more money going into cancer research and there are a variety of approaches serving to attract attention to the issue. Our job as proponents of this cause requires us to be as vigorous and forthright as we can be," said Alan Davis, ACS vice president for public affairs. "This change in tactics and strategy is a good thing and a very important development," said Fitzhugh
Julie Snllhran
Mullan, M.D., president of the National Coalition for Cancer Survivorship. "The key issue is consumerism in healthcare." But will so many fragmented groups focusing their efforts on specific cancers or specific cancer issues be less effective than a unified front with a consensus on both agenda and strategy? The answer may lie with veteran AIDS activists who continue to test the limits of "disease advocacy."
Coalitions Are the Key "Coalitions are the key, and it's important to be consistent with tactics," said New York City playwright and AIDS activist Larry Kramer, who founded the AIDS Coalition to Unleash Power (ACT-UP). "Whether it's one person or a thousand, any pressure is useful. You should never worry about diluting the message because often one person can accomplish what a thousand can't," Kramer said. — By Lou Fintor
NEWS 529
Downloaded from http://jnci.oxfordjournals.org/ at Georgetown University on July 12, 2015
Today, 5 years later, Swerdlow has done better than that: her DeWitt, N.Y.-based non-proQt Families Against Cancer Terror, Inc., publishes a regular newsletter, has been featured on network television and in syndicated newspaper columns, and claims more than 100,000 members. "Cancer has always been a skeleton in the closet, but we who know and understand cancer have a responsibility to educate our elected officials and make them more responsive to our needs. Unless we demand it, it's not going to happen," Swerdlow said. "I can call out hundreds of volunteers at any one time who are ready to bring about a new and reinvigorated national cancer policy," Swerdlow added.
