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BMJ. 2008 January 12; 336(7635): 102.
PMCID: PMC2190253

Riek Stienstra

Put gay and lesbian health on the map in wake of the HIV/AIDS pandemic

Riek Stienstra was perhaps the right woman in the right place at the right time. Faced with the first casualties of the HIV/AIDS pandemic in the 1980s, Amsterdam’s gay community suffered shock, panic, fury, and despair. But to this trauma she brought compassion, pragmatism, and leadership, launching the Netherlands first buddy projects, and ensuring that the gay community was heard in the sometimes desperate struggle against the pandemic.

Stienstra was born in rural Friesland in the north of the Netherlands in 1942. She trained as a social worker and joined the Humanitas Foundation in Amersfoort—a humanitarian organisation providing social services, partly through volunteers. In 1974 she applied to what was then known as the SAD-Schorer Foundation, a small scale “consultation bureau” for homosexuality. It reflected what were still, in the 1970s, patronising attitudes. In particular it was reluctant to employ gay men and lesbians for fear that they would be too emotionally involved.

That changed with Stienstra, who proudly declared that being homosexual herself meant that she felt a certain affinity with the problems the foundation faced. In a quarter of a century as director she put gay and lesbian health and welfare on the map, turning Schorer into one of the largest health promotion bodies in this field in Europe.

However, her outspoken nature and unbridled energy were to be severely tested with the arrival of the HIV/AIDS pandemic. The first five cases of AIDS were diagnosed in the Netherlands in 1982.

Former colleague and friend Peter Van Rooijen, now director of International Civil Society Support, working on HIV/AIDS prevention, joined Schorer in 1985. He remembers: “It was tough, our clients were dying. We were actually in shock. She remained strong and kept the organisation focused on a longer term vision, even if sometimes she could have had more of an eye for the personal needs of her employees.” The burnout rate was high.

But Stienstra brought the voice and the concerns of the gay community to the debate. She too earned respect for Schorer, which until then was not seen as part of the mainstream healthcare environment.

She became the public face of Schorer and, especially in the early years, ensured that HIV and AIDS were openly discussed in public. She later said of the challenge: “every disadvantage has an advantage,” and AIDS meant that Schorer, out of necessity, became a rich source of expertise, information, and networking.

She addressed fear with pragmatism, in particular launching the Netherlands first two buddy projects in 1985, with Schorer hiring experts from the United States. These projects addressed the needs of the gay community in the mid-1980s, not just for prevention but for psychosocial care. Many people with AIDS were young gay men living alone, often estranged from their families, and home care staff were still frightened to provide services.

Buddies offered practical peer support and assurance that someone would be there to help in the simplest of tasks, such as climbing stairs. Later Stienstra was to comment how moved she was that “so many men mothered AIDS patients to the bitter end.”

The buddy projects reached a peak of up to 250 volunteers before the introduction of combination treatments in 1996. The Dutch model was later re-exported to countries in the developing world, particularly South America.

Stienstra also had a hard headed approach to finances that colleagues called visionary. She had the courage and foresight to risk hiring teams for the buddy projects while still in the middle of a protracted struggle with the government over how to fund them. Later she found funds to recompense buddy volunteers, not because individuals necessarily deserved it but because she wanted society to formally acknowledge their worth.

She also brought awareness of the political dimension. She fought the government again and again, refusing to accept rejections for funding; knowing that this would at least raise its profile through parliamentary debates.

Famously she is said to have replied to Queen Beatrix, when struggling with steep stairs during a fact finding visit to their cramped former offices on the Nieuwendijk in the centre of Amsterdam in 1989, “Your majesty, we can’t all live in a palace.” The ministry of health called within weeks to offer Schorer new premises which it had been trying to find for years.

Clearly royalty admired her humour for on retirement in 2002 she became a companion of the order of Orange-Nassau for her public work.

Together with her work for Schorer, Stienstra was active in campaigns for gay and lesbian emancipation, especially as treasurer of a foundation for homosexual studies which established academic chairs at both Amsterdam and Maastricht Universities.

Today’s director of the Netherlands AIDS Funds and STI AIDS Netherlands, Ton Coenen, wrote after her death that as soon as HIV/AIDS arrived in the Netherlands “she rolled up her sleeves … and together with many others built everything from scratch, because it was new, enormously threatening, and there was no one who knew what must be done. Without Riek everything would have taken longer.”

Notes

Riek Stienstra, director of Schorer, Amsterdam’s gay and lesbian health foundation, 1974-2002 (b 1942), died from bowel cancer on 20 November 2007.


Articles from The BMJ are provided here courtesy of BMJ Publishing Group