The San Francisco Examiner - Wednesday, Sept. 3, 1997
Lisa Krieger, Examiner Medical Writer

Its founder -- as well as president, vice president, secretary, janitor and chairman of the board -- is 47-year-old Steve Grissom of Cary, N.C., a former airplane pilot and administrative manager for an architectural firm who acquired HIV during surgery 12 years ago.

Grissom, now tethered to an oxygen tank and suffering from pulmonary hypertension, has a specific mission for the fledgling organization, called the National Association for Victims of Transfusion-Acquired AIDS.

His hope is to convince Congress that all transfusion victims, not just hemophiliacs, should be compensated by the government for AIDS acquired from inadequately monitored blood supplies.

A total of 7,888 Americans have contracted AIDS through blood transfusions. An estimated two-thirds already have died.

This group of AIDS victims has been left out of compensatory legislation under consideration in both houses of Congress. The proposed legislation would establish the Ricky Ray Hemophilia Relief Fund, a $900 million pool of money named after a hemophiliac boy who spoke out against AIDS discrimination.

This week, the two pieces of legislation -- SB358, before the Senate Labor and Human Resources Committee, and HB1023, before the House Judiciary Committee -- are undergoing what is called "markup," a crucial time when final changes are made to the language of the proposed legislation.

Grissom's efforts have been rebuffed by the National Hemophilia Foundation, which spearheaded the Ricky Ray Fund legislation.

The Hemophilia Foundation told him that at the time the legislation was conceived, there was no way to reach people with transfusion-associated AIDS because they had no single advocacy group to represent them. Grissom agrees, conceding that many victims of transfusion-acquired AIDS died -- and the others are dispersed across the United States.

The foundation also told him that they had been assured, incorrectly, that blood banks and the American Red Cross would "take care" of transfusion patients and so this group did not need to be included in compensatory legislation.

But the third reason for exclusion is what makes Grissom so angry. He says he was told by the National Hemophiliac Foundation that the last-minute addition of transfusion-acquired AIDS patients would make the legislation so costly and "unwieldy" that it would not pass.

"This is like saying that sick coal miners qualify for the Black Lung Fund if they worked below 50 feet underground, but not if they worked above 50 feet . . . or if they used picks, but not shovels," he said. "It is so arbitrary."

"We were all caught up in the same kind of regulatory and policy failure," said Grissom. "We all received bad blood, just for different reasons."

In 1984 Grissom was the healthy father of four children, working on a project on the remote North Slope of Alaska, when he needed to be hospitalized in Seattle for treatment of acute myeloblastic leukemia.

At the time, AIDS was on the TV news nightly, but he was told that blood supplies were safe. By 1986, he had defeated leukemia -- but had acquired HIV.

He hopes his new organization will be a resource and source of emotional support for others like himself -- heterosexuals with families who don't fit into gay-dominated emotional support groups. Because their infections were acquired long ago, before the blood supply was cleaned up, many are in late-stage disease or are long-term survivors of the virus.

To reach the National Association for Victims of Transfusion-Acquired AIDS, call (919) 481-1052 or e-mail: sgrissommindspring.com. The Web site for the group can be reached at www.navta.org/advoc.htm.

AIDS groups mourn princess

Because of her visits to pediatric AIDS clinics in Britain and the United States, the late Princess Diana is being remembered for her efforts to educate the world about how AIDS affects children -- and that, all too often, children with AIDS do not have good access to quality health care.

"With one royal handshake given to a young man with AIDS in the late 1980s, Diana forever changed the face of AIDS for the world," said David Harvey, executive director of the national AIDS Policy Center for Children, Youth and Families in Washington, D.C. The center represents 350 health care projects nationwide that serve 50,000 infected and affected children, youths, women and families living with HIV.

"Here was the world's most famous woman embracing AIDS with one simple act -- a handshake," he said. "And with that handshake, she educated the world about compassion, love and understanding. Diana will be sorely missed."

Events

A free town meeting for women with HIV will be held Sept. 11 at the Women's Building, 3543 18th St., second floor, from 2:30 to 5 p.m. Topics include immune restoration and dysplasia. Free child care. Call (415) 353-6215.

"Wasting Syndrome," a lecture on how to prevent and treat weight loss, will be offered by Dr. Lisa Capaldini from 6:30 to 8 p.m. Sept. 17 in the Davies Hospital Auditorium, Ralph K. Davies Medical Center, Duboce and Castro streets.

The toll

Douglas Marko, 33, an electronic engineer with Arrow Electronics in Silicon Valley, who earned his engineering degree from UC-Davis in 1987 . . . John Howard Martindale Jr., 39, a waiter and manager of Vanelli's restaurant on Pier 39 who became fluent in Spanish, traveling for long holidays in Mexico and Spain . . . Sky Evergreen (Bob Bauer), 41, who created a jazz vocal trio, formed Sound Advice Productions and was a music editor, transcribing jazz music for three volumes of Sher Music's "The New Real Book."

Date Cases Deaths reported

S.F. 8/1 24,509 16,838

Calif. 8/1 101,898 65,257

U.S. 8/1 581,429 362,004

WHO 8/1 8.4 mil 6.4 mil

Figures are cumulative since June 1981.

Note: AIDS statistics can no longer be updated weekly due to a decision by city, state and federal epidemiologists to release new data only four times a year.

To contribute to AIDSWEEK, call (415) 777-7867.
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