Death of an activist

Kiyoshi Kuromiya lived on what he called the “bleeding edge of science.”

He died there, too.

The evening of May 10, just a day after his 57th birthday, Kiyoshi Kuromiya succumbed to complications from AIDS. One of the world’s leading AIDS activists to the end, insisting on and receiving the most aggressive treatment for a resurgence of cancer and the HIV-depleted immune system that complicated its treatment. He participated fully in every medical decision, making sure that he, his friends and fellow activists were involved with his treatment every step of the way.

He never gave up.

One of those great, visionary, larger-than-life human beings who accomplished as much as any five people, Kiyoshi Kuromiya — originally trained as an architect at the University of Pennsylvania — exemplified Oliver Wendell Holmes Jr.’s credo that “a man … should share the passion and action of his time, at peril of being judged not to have lived.”

And so it’s been said the story of Kyoshi Kuromyia’s life reads like a history of the struggles for civil rights, social justice, and human rights in the late 20th century and beyond.

Born May 9, 1943 in Heart Mountain, Wyoming, at an internment camp for people of Japanese ancestry, Kiyoshi Kuromiya was a committed civil rights and anti-war activist. He fought for Internet freedom from censorship. He was one of the founders of Gay Liberation Front – Philadelphia and served as an openly gay delegate to the Black Panther Convention that endorsed the gay liberation struggle. He created a thriving, innovative global AIDS/HIV health information network resource that should endure long after his death. He crusaded for the compassionate use of medical marijuana for the terminally ill. He challenged giant pharmaceutical corporations to put people ahead of profits

He wrote books with and for his colleague, the late Buckminster Fuller, inventor of the geodesic dome and Dymaxion Car. Kiyoshi Kuromiya was a Web pioneer, computer savant, and Internet Service Provider.

Now he is gone, and we are all the poorer for his passing.

Observes Karen M. Goulart in PGN: “In the 60s, Kuromiya was highly active in the black civil rights movement, participating in restaurant sit-ins, voter registration marches, and meeting with Dr Martin Luther King, Jr. He cared for King’s children — Martin Jr. and Dexter — at the time of Dr King’s death, and spoke at the Black Panther Party’s Revolutionary Peoples’ Constitutional Convention. In the 70s, after surviving metastastic lung cancer, he went on to travel the world with renowned architect, Buckminster Fuller, collaborating on six books and penning the last after Fuller’s death. In the 1980s, with the emergence of AIDS, Kuromiya put himself at the heart of the quest for a cure and for dignity for those with the disease. The 1990s found Kuromiya still making history as a member of the Food and Drug Administration panel that recommended approval of the first protease inhibitors.”

For close to 20 years, Kiyoshi Kuromiya had not only lived with HIV but put himself in the forefront of experimental protocols for his own full-blown AIDS that emerged in the early 1990s. I thought he would live forever, indomitable, with his trademark wiry mustache and black shoulder-length ponytail. And so I was shocked to learn of his death, because I had seen him walking down the street a few blocks away just three weeks earlier, alive and kicking, as they say, but too far ahead to flag down.

Death is like that. You think, “Oh, next time.” Only there is no next time, and forever afterward, you berate yourself when you think of the missed opportunities.

Kiyoshi Kuromiya seized opportunities. He understood science and was involved locally, nationally and internationally in AIDS research. As both a treatment activist and clinical trials participant, he fought for community based research, for research that involves the community in its design, for research that mattered to the diversity of groups affected by AIDS — including people of color, drug users, and women.

Passionately dedicated to helping others, perhaps Kiyoshi Kuromiya is best known as the founder, editor, and publisher of the Critical Path Project, begun in 1989, which implemented the strategies and theories of his associate/mentor, Buckminster Fuller, to the struggle against AIDS. The Critical Path newsletter, one of the earliest and most comprehensive sources of AIDS treatment information, has helped countless thousands of people living with AIDS all over the world. He made sure his newsletter reached scores of incarcerated individuals to insure their access to up-to-date treatment information. He established an AIDS treatment hotline that he tended 24 hours a day.

Under his direction, Critical Path also went on to provide free access to the Internet to thousands of people living with HIV in Philadelphia and the Delaware Valley, hosting hundreds of AIDS related Web pages and discussion lists, demonstrating to a whole generation of activists and people living with HIV that the Internet can be a tool for information, empowerment and organizing.

A gifted thinker who saw the broad political ramifications and cultural implications of a variety of issues, Kiyoshi Kuromiya was a leader in the battle to maintain freedom of speech on the Internet, as a pivotal litigant in a successful Supreme Court case overturning the Communications Decency Act on Internet censorship. The decision, he stated, “reaffirms our belief in the flexibility, good sense, and durability of the First Amendment’s guarantees of free speech.” Stefan Presser, Pennsylvania legal director for the ACLU, speaking from Philadelphia where the suit was filed, said: “Kiyoshi may have been the single most persuasive voice to the court.”

To Kiyoshi Kuromiya, free speech on the Net was literally a life-and-death matter when it came to disseminating prevention and treatment information about AIDS. According to the Intellectual Freedom Handbook:“Kiyoshi Kuromiya, founder and sole operator of Critical Path Aids Project, has a web site that includes safer sex information written in street language with explicit diagrams, in order to reach the widest possible audience. Kuromiya didn’t want to apply the rating “crude” or “explicit” to his speech, but if not, his site would be blocked as an unrated site. If he did rate, his speech would be lumped in with “pornography” and blocked from view. Under either choice, Kuromiya would have been effectively blocked from reaching a large portion of his intended audience — teenage Internet users — as well as adults.”

He also fought for appropriate research on alternative and complementary therapies as well, and was the lead plaintiff in the Federal class action lawsuit on medicinal marijuana. In a court document filed in the late 1990s, Kiyoshi Kuromiya, speaking of his experience having lost 40 pounds in four months and spent most days nauseated from AIDS Wasting syndrome, stated, “Without marijuana, I will waste away and perish. If I use marijuana for my health, I am violating federal criminal laws and I risk certain death in prison.” Last year, he commented, “Marijuana saved my life. It’s a great irony to me that I can buy cigarettes, which will kill me, anywhere. But marijuana, which has kept me breathing, is illegal.”

The pioneering AIDS activist was involved in all aspects of the movement, including radical direct action with ACT UP Philadelphia and the ACT UP network, PWA (people with AIDS) empowerment and coalition-building through We The People Living with HIV/AIDS, national and international research advocacy, and loving and compassionate mentorship and care for hundreds of people living with HIV. He was accessible to anyone who needed him.

As the editor of the ACT UP Standard of Care, the first medical-care standards for people living with HIV, produced by PWAs, Kiryoshi Kuromiya recommended: “This is a minimum standard. Some PWAs get a higher level of care when they demand it from their clinicians. Having an HIV-experienced doctor correlates with better quality of life and better survival rates — and is more crucial than ever in this era of complex drug combos. Find a medical practice with backup, so you can get care on evenings and weekends. Get second opinions. Review all medications taken so your doctor can help minimize side effects. Since people with HIV often have reduced micronutrient absorption, consider taking a daily multivitamin plus extra B-complex, B-12, C, beta-carotene and selenium.In the inaugural issue of Critical Path in 1989, Kiyoshi Kuromiya wrote, “It is our conviction that an heroic endeavor is now needed both to provide for the continuing health maintenance of persons with AIDS the world over, and by the year 2001 to find a cure for the ravages of AIDS for all time.”

Although he did not live to see that happen, Kiyoshi Kuromiya’s mandate, and his legacy of information and inspiration, will endure. Those who knew and loved him recall he was a gourmet cook, a Scrabble champion, a movie buff, and a debate aficionado. Boundlessly energetic, he was never too busy for a lighter moment, such as the time he e-mailed close friends the fabled, and possibly apocryphal, $250 Neiman-Marcus gourmet chocolate-chip cookie recipe.

In the official e-mail notification of his death, an organization called Philadelphia FIGHT, which funded Critical Path, expressed these sentiments honoring his memory: “We will miss Kiyoshi’s intelligence and the clear and even analysis he brought to any meeting or political activity. We will miss his commitment, and dedication to the idea that all people living with HIV should participate in the decisions that will affect their lives. And we will miss his wit, his smile, his sense of fun. If you want to honor Kiyoshi, we urge you to make a donation to the activist organization of your choice.

And sometime soon, today, or tomorrow, or next week, take the opportunity to speak truth to power, join a picket line you might have passed by, or help plan a demonstration against global injustice that you thought you were too busy to be involved with. He would have liked that.”