Men:
the Disorganized
Majority
by
Marília Coutinho & Gláucio A. D. Soares

The old view about a pervasive male dominance in society is of no use to explain the advantages secured by women in health policies. Power is related to the ability to organize and gain public recognition. Men, especially older men, are at great disadvantage in the public policy arena. They have not yet been able to organize to exert pressure and get their gender-specific interests recognized as socially and politically "correct."

1.Introduction
Decisions in public health policy are supposed to follow rational epidemiological considerations. Transmission risks, incidence and mortality rates should guide the funding of control programs. In reality, though, risk acceptability, social impact, and the needs of each risk group are subject to negotiation.
     Even the seriousness of the health threat, its epidemiological extension and dynamics, and the degree of knowledge available are ambiguous. All are negotiated before being established and used to argue for federal funds for scientific and medical research and prevention.
     Scientists arrive at the negotiating table with proposals for making advances in control or cure of a disease. Public health institutions come with proposals for prevention and educational projects. On the "client" side of the table sit not only "the State" (or government) but also organized at-risk and patient/survivor groups. AIDS patients and male homosexual groups advocate more money for AIDS research and prevention; women argue for funding for female reproductive health; Aspartame victims lobby against its manufacturer and FDA policy.... And so on.
     Pressure group strength and action is decisive for the negotiations' outcomes and consequently for the success of funding campaigns. At a time when medical research is pouring dozens of new treatments into clinical trials, funding is visibly related to the victims' chances of survival.
     We analyze the case of Prostate Cancer (PCa) and compare it to Breast Cancer (BCa) and AIDS. Prostate Cancer survivors and their families (the "victims") are at a disadvantage in health policy decisions. Funding for PCa research and prevention is much less than for BCa or AIDS. This preferential allocation of public resources does not correlate with either incidence or mortality. Mortality levels of PCa and BCa are similar, while incidence is much higher for PCa. Both are greater than AIDS. Relative amount of public money spent is not related to epidemiological control: PCa incidence and mortality are rising, while BCa's are decreasing.
     The key to understanding these discrepancies is organization — how effectively pressure groups are able to generate political consensus about the relevance of their cause. What counts is the coining of a politically correct problem.

Prostate, PCa, & Diagnosis

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Cancer of the prostate is a male disease. The prostate is a muscular-glandular organ situated at the base of the penis and under the bladder. The prostate is responsible for the production of semen. Prostate problems increase with age. Older men often experience enlargement of the organ, are more prone to developing prostatitis, benign prostate hyperplasia (BPH), and/or prostate cancer/1/.
     Prostate tissue produces a specific protein that is found both bound to cell membrane and in soluble form in the plasma. It is called Prostate Specific Antigen (PSA). PSA testing became widespread in the eighties/2/. This tissue marker is used for the purpose of monitoring prostate health and cancer development. Since PSA tests became a routine procedure, the number of diagnosed PCa patients has increased /3/.
     As most cancers do, PCa varies in aggressiveness as well as with respect to pathological features of the cells. Pathologists have developed a system of classification for cancer tissue with a scale from 1 to 5 that measures loss of cell differentiation. Cancer cells lose their original tissue identity; and evidence has shown that the further they stray from the original, differentiated, pattern the more aggressive their growth. On this scale, called "Gleason score" (named after the man who formulated it) 1 is the closest to the normal structure of prostate tissue and 5 is the most undifferentiated, or formless.
     Pathologists examine pieces of prostate tissue obtained by biopsy or during surgery. They look for the two commonest tissue types, and define them with two Gleason scores. Each cancer patient has an n + n Gleason score, 1 + 1 being the best and 5 + 5 being the worst result/4/.

Treatment Choices
What follows diagnosis is treatment choice/5/. Usually this is the most difficult moment for the patient/6/. He feels a sudden estrangement, as if something had set him apart from the rest of the world. Loneliness and helplessness are made more intense by the complexity of the controversies over treatment strategies.
     Different specialists or even "schools" favor different approaches to treatment. Most doctors will not recommend the more aggressive procedures, such as Radical Prostatectomy, for men over seventy. When the man is younger and the cancer appears not to have spread beyond the prostate, options include Radiation Treatment (RT), Cryosurgery, Radical Prostatectomy (RrP) and Watchful Waiting. They all have serious downsides. RT might not be as effective as RrP. RrP is the most aggressive intervention and results in impotence in 24% to 62% of cases and incontinence in 5% to 19% /7/. Watchful Waiting, a nice way of describing doing nothing about it, has obvious downsides.

Advanced Disease
If diagnostic indicators show that the cancer is no longer contained in the organ (it has become "systemic"), most doctors will not recommend prostatectomy, but rather a combination of hormone and other treatments. Hormone treatment is also called "chemical castration" because what it actually does is neutralize male hormones, either by blocking their production or by blocking receptors. Another option is orchiectomy, surgical removal of the testicles (castration proper).
     Castrated patients experience loss of libido, metabolic problems and a range of symptoms that resemble menopause. Castration is viewed as necessary because PCa cells are known to depend on androgens for their growth; hormone deprivation dramatically halts cancer development in most cases. However, the patient's cancer cells become "refractory" in a period that might vary from one to ten years — cancer begins to grow again despite hormone deprivation.
     At this stage, it is very difficult to control prostate cancer. Metastasis will preferentially spread to the bones and the victim suffers great pain. Treatment is reduced to painkillers and sedatives.
     New experimental treatments, clinical trials and nutritional research are very encouraging. However, today, the prospects faced by the newly diagnosed patient are gruesome.

Impact on Men's Sexuality
Besides the painful death, the most shocking effects of PCa for men are those affecting their masculinity: impotence as a consequence of RrP, incontinence, and the loss of libido that results from chemical or surgical castration. PCa is seen as a disease that threatens and kills the man inside them, the core of their identity.
     Coping with such mutilating consequences is made more difficult by prejudice and ignorance. Discussion about male sexuality is rare in the press. Men and their families are not prepared to deal with these facts. The small proportion of articles or TV programs about men's sexuality is dominated by behavioral preferences of healthy young males. Impotence is rarely approached and, when it is, is insufficiently informative.
     If healthy male sexual life is inadeqautely discussed, the sexuality of men living with the impact of cancer and treatment is utterly unknown. Available literature claims that, provided an artificial erection device is employed, orgasm is "normal" in prostatectomized patients and impotent men in general. However, the experience of survivors suggests otherwise/8/ . A recent debate about sex after RrP in a survivor-to-physician electronic discussion group has shown that most prostatectomized patients have a variety of different sensations and experiences in their sexual lives. It has also shown that most of these phenomena cannot be adequately explained with the available knowledge. Doctors have generally had less to say about the subject than participating survivors.
     Prejudice and secrecy surround male orgasm, impotence and incontinence. Despite the Kinsey Report decades ago, neither the medical and scientific community nor the press have shown much interest on these topics. PCa survivors may feel helpless in face of poverty of available options. They may not know how to cope with these outcomes.
     Old age aggravates prejudice. PCa is typically an old age disease: Eighty percent of men found to have PCa are 65 and over. Old people are not entitled to a regular sexual life in our society. Thus, the issue of the sexual losses resulting from PCa treatment is dismissed.

2.Epidemiological Data and Comparisons
PCa is the second most common cancer killer among men. The three most important cancers for men, lung, prostate and colorectal, are depicted in fig. 2. PCa's incidence increases more than the other cancers' according to age. Moreover, PCa seems to be rising in comparison to other cancers, as shown by the numbers of new diagnoses (fig. 3). A closer comparison with breast cancer suggests that while the latter shows a tendency towards control, PCa incidence is increasing (fig. 4).
     The mounting numbers of PCa incidence partly reflect the widespread use of PSA testing after the eighties. However, the unchallenged rising mortality curve indicates the lack or failure of control programs. The stabilization of the incidence curve for BCa might reflect the opposite. Mortality is not as influenced by diagnosis technology: BCa mortality is decreasing while PCa mortality is rising (fig. 5).
     When these curves are broken down by race (fig. 6), trends become sharper: PCa mortality is increasing both for white and black men, but since the early 1970s, black men's rates have remained twice as high as for white men. The rise is steeper for black men. BCa trends too differ by race: in the early seventies mortality rates for white and black women were similar. Mortality for white women stabilized and by the ninetiess began falling. Black female mortality kept on rising steadily from the late seventies on, peaking in the early nineties. It has been stable since.
     The coincidence of rates of breast cancer in the early seventies for black and white women suggests that genetics or other biological conditions are not relevant explanations for the current greater mortality among black women. Such a factor is frequently mentioned in the case of PCa/9/.
     Age differences between PCa and BCa incidence give rise to value judgments in public debate. Both incidence and mortality (fig. 7 and 8) start earlier for BCa. Before the age of 60, BCa affects and kills more women than PCa does men. Beyond that age, PCa continues to rise, with a steeper slope than BCa. Claims based on age differences for incidence and mortality tacitly suggest that women in their thirties and forties are more relevant citizens than men in their fifties.

3.Organization:
The Force of Women
Women may be under-represented among decision-makers, but they are definitely more organized than men. There are hundreds of Breast Cancer organizations throughout the United States and they are connected. The National Alliance of Breast Cancer Organizations, NABCO, established in 1986, today has more than 370 member organizations. It has been involved in many advocacy and educational activities.
     In 1992, NABCO launched an education and screening mammography program in partnership with the Liz Claiborne Foundation to provide care to underserved women. In 1993, Avon's Breast Cancer Awareness Crusade, a national education campaign, was started. NABCO was one of the partners. That same year The Avon Breast Health Access Fund was established and NABCO distributed $1.8 million to nearly 100 community education and screening programs. In October 1994, NABCO and PolyGram Records released Women for Women to benefit breast health awareness. NABCO is politically very active: it serves on the Executive Committee of Secretary Donna Shalala's National Action Plan on Breast Cancer, it had representatives on the Consensus Development Panel of the June 1990 National Institutes of Health Conference on Treatment of Early-Stage Breast Cancer and it testified before the President's Cancer Panel.
     NABCO was a primary organizer of the National Breast Cancer Coalition (NBCC), a national advocacy organization established in 1991. NBCC involves today more than 400 American organizations. Since its beginnings, a more than fivefold increase in breast cancer appropriations was observed. In the year it was founded, the NBCC set out the "Do the Write Thing" letter campaign to deliver 175,000 letters to Congress and the President — one letter for each projected breast cancer diagnosis that year. It succeeded in delivering more than 600,000 letters.
      In the following fiscal year, $132 million was put into breast cancer research through the National Cancer Institute (NCI), a gain of almost 50% over 1991 spending. In February 1992, NBCC set up Research Hearings in Washington, DC, at which prominent scientists testified. During Mother's Day weekend of 1992, NBCC coordinated 38 events in 31 states. In July 1992, the National Institutes of Health (NIH) reauthorization bill, which included $300 million for breast cancer, passed the House and Senate, but was vetoed by President Bush. NBCC organized a powerful reaction and their demands were finally met: more than $400 million was assigned for breast cancer research: $210 million in the Department of the Army and $200 million to the National Cancer Institute.
      NBCC has campaigned for several Acts and Resolutions since 1992. They met with Hillary Clinton during the presidential campaign to brief her on breast cancer issues. NBCC representatives appeared in several TV shows and held press conferences.
      In 1993, NBCC launched a Campaign to send 2.6 million letters, postcards, signatures, faxes and mailgrams to President Clinton asking for the development of a national strategy to end the epidemic. President Clinton responded promptly: on December 14, 1993. Coalition members, other breast cancer advocates and members of Congress, the Administration, the scientific community, private industry and the media came together to begin sharing ideas and discussing the elements of a strategy to end breast cancer. NBCC members have assumed leadership positions in the ongoing National Action Plan on Breast Cancer.
      In 1995, NBCC developed Project LEAD, a program for breast cancer activists to educate advocates in basic scientific and medical language and concepts and in the structure of breast cancer research decision-making. Project LEAD graduates seek out and participate on research boards and committees.
      Each year, NBCC sponsors an Annual Advocacy Training Conference at which hundreds of breast cancer activists from across the country are trained in advocacy skills and educated in the legislative and research decision making processes. NBCC's Congressional Forum Series informs and educates policy makers through briefings on specific breast cancer policy issues. Each forum includes a scientist, a policy analyst and a consumer.
      In May 1996, NBCC launched its third national petition to the President and Congress, aiming at 2.6 million signatures in support of $2.6 billion in breast cancer research funding by the Year 2000. NBCCF collected nearly 2.7 by May 1997. NBCC launched a Voter Registration/Voter Pledge Drive, facilitating registration for their members and asking them to pledge to vote and get others to do so. They devised a ten-point policy platform and required all public officials and candidates for office to endorse it.
      NBCC's Clinical Trials Project trains members to work in partnership with industry and the scientific community in order to expedite the conduct of clinical trials. NBCC established an affiliated Political Action Committee (PAC) in 1997. With the money raised through this PAC, NBCC aims to increase its activity and influence in federal and state policies and elections.
      In September 1997 in New York City, NBCC hosted its first Workshop for the Media: Understanding Breast Cancer Research and Policy. This workshop was directed to members of the media who are responsible for writing and reporting on breast cancer. Federal appropriations for breast cancer research this year exceed $500 million. The NBCC advocacy model attracted international attention and established a paradigm for action. The National Breast Cancer Coalition Fund (NBCCF) hosted the First World Conference On Breast Cancer Advocacy- Influencing Change, on March 13-16, 1997 in Brussels, Belgium. They brought together more than 250 breast cancer activists from 43 countries and six continents.
      As they have stated, "Perhaps the most important change NBCC has brought about is acceptance of the idea that breast cancer survivors MUST have a say when policies are formed and research funding decisions are made." /10/
      In a little more than one decade, breast cancers activists in the United States multiplied several times the federal appropriations for BCa research and control, educated the Press and Congress, and professionalized activism. Activists now have a solid technical background that covers medical issues as well as politics. There are efficient strategies to promote voting power and influence Congress.
      The organizational model of BCa activism, established in the United States, is being internationalized. Countries that lacked tradition in pressure group politics are rapidly absorbing the "American way" of getting their interests respected.
      If one side of BCa activism is its entrepreneurial and professional outlook, the other is its feminist commitment. Another founder of the NBCC was the Feminist Majority Foundation. In the Feminist Majority site, Eleanor Smeal urges women to "work together to secure our fair share of research dollars." Feminists hold that women suffer a historical disadvantage in health assistance. They were engaged in breast cancer advocacy from the beginning as part of a general agenda towards special health programs for women. They demand more attention to female reproductive issues, which are seen as the roots of the physical oppression of women. They led pioneering efforts in activism and advocacy in the field of health. And it worked.

4.Organizing Prostate Cancer Activism
Five years after NBCC and lacking the support of a national alliance of organizations with hundreds of members, the National Prostate Cancer Coalition (NPCC) was born. In July 20, 1996, a group of prostate cancer advocates met at Las Colinas, Texas, for this purpose. The NPCC was set up with the available patient advocacy groups, including: American Cancer Society/Man to Man/Side by Side; American Foundation for Urologic Disease; The American Prostate Society; CaP Cure; The Mathews Foundation; MENCANACT; National Coalition for Prostate Cancer Patients; New England Prostate Cancer Network; Patient Advocates for Advanced Cancer Treatments; The Prostate Cancer Communications Resource; The Prostate Cancer Education Council; Real Men Can Cook; Tampa Bay Men's Cancer Task Force; US TOO International.
      The quantity, quality and level of PCa activism is way below those of BCa. Its National Coalition is weak and small compared to the BCa Coalition. Trying to follow paths established by women, they launched a petition campaign in 1997. Even though it is more modest, with a target of one million signatures, it hasn't been able to make significant progress towards that goal/11/.

Table 3 - National Cancer Institute Spending, by Cancer Type. 1996 and 1997
	1996 Spending (actual, in millions)	1997 Spending (estimated, in millions)
Breast	$317.5	$332.9
Lung	$119.4	$123.3
Colorectal	$98.0	$99.0
Prostate	$71.1	$74.0
Source: CancerNet from the National Cancer Institute - 1997

The Director of the National Cancer Institute, the NIH's best supported institute, has recently requested an increase from the 1998 budgeted figure of $2.4 billion to $3.2 billion. This is called for by all cancer advocates, and their wishes will probably be granted: the NCI's forecast is $2.9 billion in 1998 and the full $3.2 billion in 1999. Most of the money will go to laboratory research and clinical trials. Beyond that, specific programs investigating better access to clinical trials, improved clinical research and a greater emphasis on cancer centers (which will be increased from the current 57 to 75) are also planned/16/.
      With such a significant increase in the pie, the question remains as to how the slices will be cut. Table 3 [above] shows that BCa receives more funding than lung, colorectal and prostate cancer together. Obviously, funding priority is not decided on the basis of the number of deaths. Furthermore, together, lung and colorectal cancers kill more women than BCa does. Thus, funding priority is not decided on the basis of gender-specific (female) mortality either.
      This means that cancer funds, however large, will be sliced according to the strength of each interest group at play. Experience from the recent past has shown that to collide with BCa lobbyists is too great a task for PCa advocates. The Public Forum for Prostate Cancer was held in San Diego from September 13 to 14, 1997. There, activists discussed resolution SB 273, which should devote $2 million for cancer research/17/. PCa survivors and their families advocated for PCa priority in funding, but the result was frustrating: the approved resolution established that the funds should contemplate gender specific cancers not previously supported in the past. The failure in their strategy is due to the force of the lobbyists for female cancers. In that same year, in the Senate budgetary deliberations of the State of Massachusetts, the $1 million PCa prevention fund was threatened with being reduced to $500 thousand, while BCa received $5 million for the same purpose/18/.
    Within the larger category of medical research, funds also seem to be granted according to the strength of interested groups. AIDS research receives much more funding than the cancers, as seen in fig. 9.
    AIDS research receives almost ten times as much as PCa research. While each PCa death corresponds to $2,631 in research funds, each BCa death is worth $9,700 and each AIDS death $72,000/19/.

7.Concluding Remarks
Two related policy issues are mingled here. The first is: who should have precedence in life-saving efforts? And the second is: how should public funding for research be spent?
    Precedence on life-saving and health policies could follow different rationales. Policies based chiefly on equitability principles could favor people with longer life expectancies. This would mean focusing on children. The leading cause of death in the youngest age group (1-4 years) is "accidents and adverse effects." In 1995, this cause was responsible for 36% of all deaths for the age group. Congenital anomalies comes next with 11% and then malignant neoplasms, with 8% /20/. According to this principle, the bulk of NIH grants would go to programs for adverse effects and accidents. In actuality, this does not happen.
    Another way to be equitable would be to concentrate on those who are more prone to get sick and die. In this case, policies would concentrate on older age groups, who die primarily of heart disease and cancers. Cancer is the number one killer in the 45-64 years age group, before being displaced by heart disease in the 65 and over group. Another rationale would be to put a high value on a return from social investments through conservation of mature productivity and prevention of negative impact of death on dependents both younger and older. This would favor the 45-64 age group, with its cancer killers. Finally, one last possible rationale is to minimize injustice where the risk group for a certain disease or cause of death coincides with a minority. Diseases or risks affecting blacks, hispanics, women, homosexuals, Indian-Americans and other minorities would be granted special attention.
How Research Aims Mesh With Health Policy
Research funding issues partially overlap with health policy issues. The first rationale adopted in science policy, known as the "linear" model for research funding, presumed that there is a chain of actions that leads from basic research to desirable technological or medical products to society.
    This linear model, a rationalization of the Ivory Tower, emerged in the World War II years and guided the establishment of the National Science Foundation and the emphasis in military research. According to the linear model, scientists turn out to be useful if they are given freedom to pursue research problems far beyond (and protected from) distracting demands of society. The linear model was the first attempt to establish a systematic governmental policy for science and technology. It has been out of use for a long time.
    It was replaced with a view of science as the driving force of development. Since the mid-sixties, the growing awareness that science and technology should be planned drove most governments to create special organizations, funding agencies and advisory boards. "Science for development" survived well until the mid eighties. The economic reality of commercial war, with its emphasis on technology, suggested that the main thrust of an effective science policy should be to stimulate industrial innovation. That is how science and technology could contribute to enhance a country's competitiveness.
    Basic science enjoys today a fraction of the prestige and rank it enjoyed in the past. These transformations have followed changes in science and technology and their relations with society at large. Today, science is practiced in a diversity of institutional environments and is increasingly transdisciplinary in nature. It has growing importance in economy and industry. It is increasingly problem-focused and socially accountable, involving larger social groups in setting of goals and priorities. Science became a commodity, governments became brokers and the clients are increasingly diverse/21/.
     With the empowerment of different social actors plus demands for increased accountability by funding decision-makers, negotiating the relevance of research became more politically complex. Each client advocates its own interests and "the common good" is forgotten.
    In interest group politics there is no general rational principle for social policy. It is the age of political correctness, where relevance is permanently negotiated by interest groups. Relevance and worth depend on each group's ability to persuade public opinion. Diffuse political consensus is the name of the game. Women have been successful in this enterprise. They have organized and have convinced public opinion that their health problems were disregarded and that they were disadvantaged. They have demanded special attention, more funding, and institutional space on a par with their claims. They have developed professional methods of influencing congressmen, the media, and public institutions. Serving women's interests has became politically correct; denying their requests can be dangerously incorrect. Their political correctness is so consensual that their dominance and advantage in health policy is never disputed.
    The old view about a pervasive male dominance in society is of no use to explain the advantages secured by women in health policies. Power is related to the ability to organize and gain public recognition. It is also related to the degree to which the group determines political consensus. Men have never been considered a group with special problems. They have never before organized towards common interests on health conditions. PCa initiatives are among the first ones along this line. In the domain of health policies, men, the disorganized majority, failed where women succeeded.
© 1999 Marília Coutinho & Gláucio A. D. Soares
All Rights Reserved