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    Breast Cancer Activism

    Copyright:

    © All Rights Reserved
    Download as PDF or read online from Scribd
    Flag for inappropriate content
    19 views6 pages

    Breast Cancer Activism

    Uploaded by

    vinodksahu
    Breast Cancer Activism

    Copyright:

    © All Rights Reserved
    Download as PDF or read online from Scribd
    Flag for inappropriate content
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Ling Vat keon nathan ee (run art entero Tysenscinaora parror usar ie nr ‘ews sic shoves fo USN, erence 12 Febawe Iertuesseclxensane snes om ‘stony sorastche se ms een hh FE. Tisieuine PERSPECTIVES 6 Sapte cist tng gant coeragee Sitar) mercer ss ea 1s eR Aeciae cnet nega coun seaeean on 45. fingn.8 6 oan 4S tae cana a ‘tiation 48, Spare | Sgr atnseb mates on rent Spmeatireke. aarceew ne sec we Big er brean © Guar ater ‘fg orto ot ase " 44 Sega one tatzam het &) Ontine tinks paranases {es taatng eeharew nead nn ecarcap srowesnee pneceternaere Sremegotssacraltreseoyengeresorna enor |paua car stresses oe eae Sefer ea San 08 ee a "as ober Na ae UN | indatenenjeuve es Mar 9A |g) earner Medics ora: Mvosreanasrs coniaupze me ‘ceo ois morse BEE Breast cancer activism: past lessons, future directions Barron H. Lerner reast cancor acthiem has becorte a ture in the Untedl States, where fundraising ‘overts ap ublanitous and government tnancing ef research nto he disease hes skwtocketed. Acinits in other counires are row reoering sini accomplishments. Here, precioninanty using te Unites States ss a case uc Hanalyge he recent successes of breast concur acttsm. also raise @ series of questions about ha utes goals of activism, Efforts to publicize breast cancer jn the ‘United States cam be traced back 0 1923 [see arene), when physicians and laypeople ‘who were concerned with high rates of can- cer mortality formed a voluntary sss0ciasion, the American Society for the Control of Cancer (ASC.C}, As part of its educational mission, the ASCC urged women to prompily show breast lumps to their physi- cians. ASCC publicity stated that breast ad other cancers sre curable by eadical surgery, if discovered and treated promptly (#5. By the 1950s the ASCC had become the ‘American Cancer Society and was pramoxing breast self-examination ase way of finding smaller cancers that were less likely to ave spread. Screening mammography became commonplace after 1974, owing, in large part. to the public surrouncling the breast cancers of First Lady Betty ord and Happy Rocketelier, wife ofthe Vie President-elect, Nelson Rockefeller ‘Women’sactivism bad gain the 18305 with the founding of the Women's Field Army, a group of women wha wished 1a ‘educate the public about the breast cancer rmerace. Emphasizing the need tight’ the seas, the several hundred thousand Army members wore military garb and earned seripes by recruiting other women to the cause, "The arganized women of America” stated Congresswoxrue Faith Rogers, ar do much ta drive the scourge from the and”, Field Army publicity wes probably successful VOU P| MARCH Dane aa ‘Timeting | The risa of breast cancer activism Hee ws 7 in getting women with breast lamps to see their physicians scones Inthe 1950s, Terese Lasser. abresst concer patient, began Reach to Recovery International lay arganization that educated women about rehabilitation alter mastectomy, Lasser’ pioneering eforts fastered frank discussion of the emmotional ramifications of breast cancer But there were no other atempts at ‘organized breast cancer activism yatil the 1970s, when large numbers of worsen began to question the standard therapy for the disease — the radical mastectomy — “The organized women of America can do much to drive the scourge from the land.” and how physicians arrived at treatment decisions. Among the earliest ativists wos Babette Rosmond,a New York writer who was diagnosed with breast cancer in 1971 ‘716 22. Limbodying the ethos of the emerg fog women’s health morement, which ‘was questioning the avihority’of the ‘overwhelmingly male medical profession, Rosmond emphatically declined the disfiguring cadical mastectomy, which involved eemovalof the cancerous breast, nearby lymph nodes and both chest-wall muscles on the affected side. Arguing that ‘women had "the right to choose” among, various treatments, Rosmand eventually found a physician who performed 2 Jompectomy. "T think what ¥ did was the Drighest level of women’ liberation’ she ater ‘wrote."T said 'Na'toa group of doctors who told me You most sign kispapen you dont have tokoow wat val ahout “Tanne ws pethaps best mbodied bp Rose Kishnea Washingt: DC journal, siho developed. breast cancer in 1974 ‘tea. Aer elinga Best op Kashner wenn ft noo srgeon but oe met ippries to research the tapi, Tere heal covered ha any pyc xpi tne ‘siete Unite States bee tht adc Imasectomy wat obsolete Kushner expecially jected tthe continied ase ofthe s-elad “one-sep procedure, in-which te surgeon immediate procarded oral mastery itan intraoperative biopsy revealed ances Such a strategy, Kushner helio encod swomen asthe smacked perhapethe mot ruil dvsion ofthe ve “hat made Kushner so nique washer willingness 0 ead the medial hteratice ane then diel challenge physicians who Sinagrecd with her Kesiner's ba obice tion from the back of leccure balls became commonplace at medical mestings. When randamired controlled sal evenly prove hat radial mastectomy was ume ‘ssay the connection between activin nd good sciene wos exabishe. Kushner ho established the Breast Cancer Aevisory Center whic answered queries fm tn sands of women with vreast ane Other organizations, such a SHARE sea V-ME, Soon established counseling services for sratten withthe disease, The growing role ff patentsin addressing the elles oF bros cancer ited wll withthe emergence cof consamer activism inthe 15705 Activiem becomes professionalized By the mid-1980s. as the number of breast cancer organizations continued to grove there was a perceived need among breast cancer setivists for a more permanent advocacy movement that would sustain Jabiying, fundraising and publicity efforts In 1986, Kushner and theee other women — Ruth Spear, Diane Bum and Nancy Eriaker — formed the National Aline of Bress Cancer Organizations (NABCO}, NABCO remains umbrella organication for over 4 agen: cies hat provide eduemsionalrxourcesabout thedisease Unfortunately, Kushner died afer can cer in 1990, having spent L6 years a» America’s best-known breast cancer activist, but ber legacy was preserved in 1991, when NABCO executiveditector Amy Langer (herself breast cancer survive), ‘he outspoken activist and breast surgeon Susan M. Love and others formed a qrasse roots advocacy organization — the National Breast Cancer Coalition {NBCO) The NBCC had chroe goals: increasing No one is safe from CANCER AMERICAN CANCER SOCIETY ‘gure || Educational postor issued by the “American Society forthe Control of ‘Cancer even 1940, Counccy sf he Amincan Cancer Soasty Figute 2 |Two of ho frst well-known breast cancer activists | Now Yon writer Sabato Fosmora 1984 courtesy of Jim Stoney | Jouralet and breast cancer actus! ese Kuhn, ce 1986 courtesy of Haney Kure esearch funding forthe diseases increasing access to screening and treatment for all ‘Women; and increasing the role af women, in health-poliey decisions — something that had long been absent form the wat against breast cancer, During the lst years fof her ie, Kushner had come to emphasize this ast aim of promoting consumer input Box 1 | Breaking taboos Early effortsto promote breast cancer activism were hindered by cultural taboos about discussing both cancer and breasts it public Aslateasthe 19605,up to 90% oF ‘yrcians in the United States preferred to ‘onceal he diagnosis of cance from patients, Women and doctors ali were ‘uncomfortable with touching breasts even looking for ent cancers. The growing openness of western society the 19705. changed this situation. Truth-olling about ‘cancer became a prerequisite for informed consent. And the sexual evolution helped transform the breast into a cultural icon, displayed mao openly in magatines, movies ‘and art These trends merged when sees ‘of women, most notably activist Deena ‘Motagerand the model Matuschta, bared ‘theirmastecomy sears telling thewerld “You cant look away anymore”. In contrast to their predecessors, modern breast cancer Activists Bene from promoting the health fof an orjan that isalwaysthe centeof smtenton. NATURE FIWIEWS | CANCE \ithin medical org2nizations. Among her activities, asa layperson, were reviewing grants for the National Cancer lnstitute (NCI) and encouraging women to lestn about, and participate in, well-designed Clinical tials, which she believed provided ‘the best information about breast cancer “Why did the founders of the NBCC focus con breast eancer alone, especially as other ‘women’s cancers, such as ovarian, endo- retrial and cervicel cancers, have lower survival rates? They emphasized breast cen cerbecsuse it was (and remains) the most ‘common nen-skin cancer in women: it now {alls oughly 40,000 women each year in the United States alone. Moreover, because breast cancer threatens both life and an ‘orgen that fs associated with sexuality and motherhood, was the disease that women feared moat 60k). But despite these consid- erations, federal funding for research into breast cancer remained mivimal. In 1989, the United States government had allotted ‘only $74.5 million for this purpose, less than 596 of the amount earmarked for AIDS, which Killed only half a5 many (22,000) people in the United States ann ally By recruiting representatives throughout thecountry; the NBCC obtained 2.6 million signaturcs in support af 9 National Action Plas on Breast Cancer in 1993. NBCC mers- bers frequently testified before Congress and ‘worked closely with the medi, cementing the ‘organization a formidable political force fon Capitol Hilf. “Women had declared war on PERSPECTIVES breast cancer”, NBC President Fran Visco Jater eeclled, and were insisting that Congress “find a way to fund that war", By 1996, annual funding for beast cancer, channelled through the NCI anda new Department of Defense programme, had jumped to over $550 milion; it now tetas $700 million (3 Meansile, other groups havealso raised al lions of dollars through highly visble events. ‘These include businesses such as Avon, which dnas organized three-day, 60-mile walks, and charitable fundraising orgenizations such 26 the Susan B, Komen Foundation, which has sponsored the Race for the Curein over 00 cities. Asa result, breast cancer has become the*hot charity” ithe United Stats" ‘Once the NBCC had became a key player inthe United States breast cancer establish- ‘ment, similar groups formed elsewhere. In 1994, netvists founded the Canadian Breast Cancer Network and Europa Donna, aa. advocacy group now active in aver 25 Earopean countries‘: Although these ‘groups share common goals with the NBCC. ~ suchas fundraising for research, sponsor ship of conferences and education of the general public — gavernmental Sunding Sor these activities has remained much lower than in the Uniced States, For example, the Canadian Breast Cancer Initiative receives only $7 million annually from the govern- ‘ment. In the United Kingdom, charities raise moat of dhe money for breast cancer research. ‘Where were the large sums of money ‘raised in the United States spent? NCI furé- ing largely supported basic science research that investigated breast cancer at che molecu- Jar and genetic level, Ass result, scientists have gained considerable knowledge about both a series of genetic mutations that pro- smote the growth of breast cancers and the structural characteristics of ells that become ° PE PPL PEPE (Seae Sa5) .q1203| United States goverment funding {or breast cancer research, 1990-1000. ‘Counasy ore Naina Bresst Career Coaten, DOD, Deparment ct sense: RUN. Nato! autos of HeaivNatora Gace nee YVOTUME =| MARCH 200? Tea? “Tthink what | did was the est level of women’s liberation. 1 said ‘No’ toa group of doctors who told me ‘You must sign this paper, you don’t have to know what it’s all about” ‘concerns Perhaps the most eonerete accra Plishment of such research so fa¢ is the discovery that overexpression of the gene ERBB? (also known as FER2!neu) promotes aggressive growth in more than 253% of breast cancers, The subsequent development ofan antibody —~ trastuzamab (Ferceptin} — that inbibits ERBB2 represents a signifi= cant breaichroughh yn breast cancer therapeu: (ics. The Hereeptin success story sterumed from the joint efforts of a basie-science researcher, Dennis Slamor,albiotechnology coxmpany Genentech ne. and finding fom the Revlon Company". Most importantly, NBC senior policy analyst Sara Collina argues, Herceptit research was done in ‘collaboration with activists, whe helped t0 promote and design the studies (Sara Calling, persosal communication). The ‘NBC’ Project LEAD teaches lobbying skills tebreas, cancer activists and teeing them to “ton entific review pans, ‘The NBCC was also instrumental 46 ensuring Congeesioral funding forthe (990 [National Breast and Cervical Cancer Fatly Detection Program which enables state and Tocal agcrcies 10 fund testing for women sho cannot ator 0 participste in cancer sees ing progzamies Italo helped in obtaining, funding for the Breast and Cervical Cancer Preverni. and Treatment Act of 2006, hich ays fos teeatment of neatly women who are subsequently diagnosed with either of these Aiseases. Groups such 2s the cosmetics ‘company Avon and the Susan B, Komen. Foundaciom have alsa earmatked fancs to improve community-based breast cancer screening and teatmentamong the medically underserved". As part ofits outreach and ‘education #forts, Avon has awarded over S14 _niion 0400 local programmes since 1992. So, as well as waintaining a grassrvots framework, the NBCC hashelped to profes sionaize bres cancer advocacy” The kn ‘edge, organization nd dedication af bseast ‘ater artis have earned them considerable politica clout, and attracted che atention of legislators esarchers and the public. ‘Table | | Total Nil funding by disease or area of research, flecal year 1997 Disonse/eree of esearch Prevertion cance researc Brain asorcers ADS Cardiovascular research Agog narton ‘Tobacco rosarch Breast cancer Althaier’s disease Disbetoe ‘weentenonaty ‘Smokeng ene heath Kidney dsoase Fohaoiiaton Hyparionsion| tung cancer Stoke ‘Sowualy tarsmited dleosees/nerpas (Cesoporosis| Schzorinena Prosiat canoe: Parknsons cease Seep asorers yi vais Tubereuoas research Spnalcorsriay Sicke-coaraoria Sure ant oath syncrome Lupus Hepat © Fostoin-Bar us ‘Chron angie syndrome |NH.Natl nattabo Hesh. AbeS Fom RE. Misguided priorities? Bur some — ranging from academies to social ‘rites, and even activists themselves — have begun to question the choices of the Breast ‘sneer movement, One obiection is that breast cancer activists have used fective publicity tactics (oaccamulate to greata share of the research pie, Thats, the perennial attention wo breast eancer has dict atention from dis- ease that kill ore wornen, such a lungs corand heat disease TABLE For example, NCI funding per death from breast cancer is roughly ten tienes the total per death from wag cancer, which kills meats four imesas raaty people in the United States annually. Whereas 858 of those with breast eineer sorvive, 85% of those with lung cancer do Funatng gn mittons) 53225 2.761 82.539 81.503 51,080 Po saz 3129 sai 3809 320 sara soar 198 sit ses, stag sre si20 sig si 8105 S70 861 not ™ Although breast cancer activists also adnate nding increases fr other scious diseases. 2s shown by tir recenc support of ‘cersieal cancer legislation, in teality there ‘competition for the $28 billion in annual Funding froma the United States National Tnstzutes of Health, and Congress)tsall cated money tothe groups that mos effec: sively marshal data, visibility and celebrity spokespeople on their behalf, Given that fetes of breast cancer continue ta cise in the United Staes (even as marzality f finally clining), itis unlikely that activists will broaden theiragenda is the foreseeable future. Other erties have questioned the breast cancer movemeat’ lacus on carly detection and treatment as apposed to prevention. Certainly he recent weleome dedine sn rest cancer mortalityia he United State United Kingdom, Canada and elsewhere strongly indicates that uch forts — most likely screening maramogrephy and aduvart hematherapy—save ives And est cancer civ, who have become among he most ardent proponents of weldesigned cieniic stodies, have helped to ensuce that the promises of ently detection and eaten are hor exaggerated For example, during the ost een eonuonersy over whether sen ing mammography sevesives®, the NBCC as strongly argued that wornen aeenitled tolearn about the ambiguities of te data” ‘Neverthe the base mesage at rest

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