HIV/AIDS Treatment, Care, and Support Partnerships in Russia

What We Do › Palliative Care › HIV/AIDS Treatment, Care, and Support Partnerships in Russia

Sasha Volgina, a native of St. Petersburg, describes how she learned she was HIV-positive: “A doctor said to me, ‘You have AIDS. You will die.’ I lived like that for six months, without any support.” Six years later, she has found the support she needs and advocates for others living with HIV/AIDS as well. At an AIHA workshop on HIV/AIDS palliative care in April 2005, Volgina shared her perspective with Russian healthcare providers.

The six-year journey that led Volgina to the AIHA workshop has given her considerable experience with how far Russia must yet go to meet the recommendation of the Joint United Nations Programme on HIV/AIDS that palliative care be integrated into care plans for all people living with the disease. The unfeeling and inaccurate diagnosis that Volgina initially received—she had HIV not AIDS—illustrates how stigma can rob even healthcare professionals of the most basic level of compassion for their HIV-positive patients.

This lack of compassion has been a theme in the treatment that Volgina has received since she tested positive, as it is for many Russians living with HIV/AIDS. A few years ago Volgina found herself hospitalized with HIV-related complications and surrounded by suffering patients. “There were no people to help them, so I just started to do it.”

From there, Volgina and seven other HIV-positive activists went on to found Svecha, a non-profit organization to help provide palliative care services to HIV/AIDS patients in St. Petersburg hospitals. Svecha, which means “Candle” in Russian, equips volunteers with the skills to provide basic social support to hospitalized patients and to connect them with food, medicines, and other material resources.

Volgina, whose educational background is in psychology, also trains health professionals and other care providers in psychosocial aspects of palliative care for HIV/AIDS patients. At the AIHA workshop on palliative care held in Moscow in April, she taught multidisciplinary care teams—each composed of doctors, nurses, psychologists or social workers, and AIDS activists—from 10 different regions of Russia. The AIHA curriculum introduced these care providers to palliative care and improved their abilities to work together to address the diverse needs of HIV/AIDS patients.

According to Volgina, many of the participants came into the training very reticent to talk about these issues. “They were afraid. They thought, ‘It is awful to work with people who are dying.’” Yet, as a result of the AIHA workshop, the number of participants who indicated that they felt prepared to initiate conversation about end-of-life issues with patients and patients' relatives increased by 80 percent. A full 63 percent indicated that they felt ready to initiate palliative care services in their own regions or institutions.

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