Since we just celebrated Veteran’s Day in America, when the Treaty of Versailles was signed on the 11th day of the 11th month, 1919, effectively ending World War I, it is fitting to look at just how much we should appreciate our numerous freedoms, especially freedom of speech. Freedom of speech, so vital to the hemophilia community in the US and other countries still seeking inquiries into how and why so many with hemophilia died of AIDS, is not yet a reality in many countries, who continue to suffer without support or relief from their governments.
This past week, China banned a conference called “Blood Safety, AIDS and Human Rights,” organized by the Beijing Aizhixing Institute of Health Education, in cooperation with hemophilia activists, which was to take place in Beijing last Saturday. Reuters reports, “Police went to the building housing the Aizhixing Institute on Friday and asked its director, Wan Yanhai, to speak to them downstairs, [a] source said.” Wan then phoned the institute and asked staff to cancel the conference. Wan did not return to the institute and his whereabouts were unknown.
China has been criticized for ignoring the existence of the AIDS epidemic, which contributed to its spread. The Communist authorities are suspicious of groups they cannot directly control, like the hemophilia patient group. Indeed, a leading patient advocate in China, who has hemophilia, told me that no more than 10 hemophilia patients can meet at a time, or else they would be considered subversive. I think of the recent NHF meeting, where about 2,000 met to network, share and learn. I realize how stifled so many are in our global community, and how blessed we are. But we are blessed as a result of those brave souls who dared to speak out, on the wings of our protected freedoms. Would that China had such blessings, but its people with hemophilia do have courage and perseverance, and we hope for them.