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--Sally Cooper.  “Sorting the Hope from the Hype: Practical Suggestions for Community Based AIDS Treatment Education

Thousand Flowers

Remembrance of AIDS activists Sally Cooper and Dr. Joseph Sonnabend by Ivy Kwan Arce in conversation with Debra Levine.

Sally Cooper created possibilities, for she understood that merely surviving with HIV/AIDS is never enough. A possibility offers real evidence that there are others in the world who are invested in your vision for your life and will be at your side to help you achieve it.  That is care.

 

Sally dedicated her life to creating the possibility of a life beyond an HIV/AIDS-diagnosis for marginalized people.  Her 1997 article demands that AIDS service providers take the time and make the effort to understand what it is like to live with HIV/AIDS for each singular client they encounter. For her academic readers, Sally articulated this demand as implementing a  “non-directive, client centered process recognizing the whole person.” That rather dry phrase echoes my own experience of becoming Sally’s client and friend because her empathic approach resonated with me. It’s why the biweekly Women’s Treatment Project meetings at the PWA Health Group became my second home. Sally listened to the details of my life. In response she provided a wealth of information that I needed and aided me in accessing treatments and services when other women in my group and I requested them. Sally always responded to us  with great warmth, joy, and the utmost respect. She demanded that experts who met with us did so as well. 

 

Sally was relentless and fearless in her approach to challenging current HIV/AIDS treatment regulations. Under Sally’s watch, The PWA Health Group,  didn’t just distribute unregulated treatments to its clients. She understood the organization functioned as an ongoing AIDS demonstration, carrying AIDS medications in order to publicly challenge the Federal government to accelerate testing of novel therapies to treat HIV and HIV-associated opportunistic infections. Sally didn’t back away from unpopular potential treatments because of their negative clinical histories (she insisted on carrying Thalidomide when it showed promise for the treatment of lesions, sores, cancer, and tuberculosis but also gave extensive information on previous clinical side-effects).  Sally’s clear-eyed fight for the quality of my health and the health of other women with HIV/AIDS does not prominently figure in the histories of AIDS activism—but it should.  And while I still have more days and a rich full life in great part because of Sally, I can tell that story here.

no solo distribuyó tratamientos no regulados a sus clientes. Entendió que la organización funcionaba como una manifestación continua contra el SIDA, que transportaba medicamentos contra el SIDA para desafiar públicamente al gobierno federal a acelerar las pruebas de nuevas terapias para tratar el VIH y las infecciones oportunistas asociadas con el VIH. Sally no se retractó de tratamientos potenciales impopulares debido a sus historias clínicas negativas (insistió en llevar talidomida cuando se mostró prometedora para el tratamiento de lesiones, llagas, cáncer y tuberculosis, pero también brindó amplia información sobre efectos secundarios clínicos previos) .

不只是向其客戶分發不受監管的治療。她理解該組織的作用是持續進行艾滋病示範,攜帶艾滋病藥物以公開挑戰聯邦政府,以加快對治療 HIV 和 HIV 相關機會性感染的新療法的測試。 Sally 並沒有因為其負面的臨床病史而放棄不受歡迎的潛在治療(她堅持使用沙利度胺,因為它顯示出治療病變、潰瘍、癌症和結核病的前景,但也提供了有關先前臨床副作用的大量信息)

1. Cooper, Sally. SIECUS Report: New York Vol. 26, los. 2 (Dec 1997: Jan 1998)

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“Community-based treatment, education and support is grounded with a firm belief in both the possibility of survival and a lack of denial about illness and death.”  1
                      

Citations
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