Norwalk nonprofit enlists patient in cancer-drug test

A Norwalk nonprofit enrolled its first patient in a clinical trial of a drug candidate to treat multiple myeloma, a cancer that attacks bone marrow cells that produce antibodies to fight disease.

Multiple Myeloma Research Consortium (MMRC) is organizing 10 sites to test a drug under development by Proteolix Inc., a South San Francisco company that in May raised $45 million to support the drug trial.

The new trial represents a victory for Kathy Giusti, who in 1998 founded MMRC affiliate Multiple Myeloma Research Foundation to organize research among disparate academic centers. In 2003, President Bush appointed Giusti to the National Cancer Advisory Board, which is currently chaired by University of Connecticut oncologist Carolyn Runowicz.

More than 50,000 people in the United States have multiple myeloma and the American Cancer Society estimates that nearly 16,000 new cases are diagnosed annually, most of them in people between 65 and 70 years old. That makes the disease the second most prevalent blood cancer after non-Hodgkins lymphoma.

The drug trial is being led by the H. Lee Moffitt Cancer Center & Research Institute at the University of South Florida and includes St. Vincent’s Comprehensive Cancer Center in New York City.

Patients will receive Proteolix”™s regimen designed to inhibit proteasomes that break down proteins. In 2003, Cambridge, Mass.-based Millennium Pharmaceuticals Inc. developed the first protease inhibitor approved to treat multiple myeloma. It was used to treat patients who had relapsed after receiving older therapies.

MMRF funded research that led to the approval of Millennium”™s Velcade drug and Millennium in turn is an MMRF sponsor, as is a Summit, N.J., company called Celgene Corp. that sells a separate class of drug for treating myeloma.

Proteolix”™s phase 1 trial demonstrated that patients who relapsed following multiple therapies still achieved anti-tumor responses using the new drug candidate.

Giusti”™s organization has raised $50 million and has created a tissue bank for use in clinical tests with more than 900 bone-marrow aspirates and 800 matching blood samples. In 2004, the most recent year the Internal Revenue Service has records online for MMRF, the organization distributed more than 25 grants of $100,000 or more to various research groups.

A separate organization in Hollywood, Calif., called the International Myeloma Foundation (IMF) also raises funding for the cause. Earlier this month, a Prospect, Conn. multiple-myeloma survivor named Michael Tuohy completed an IMF-sponsored coast-to-coast caravan to raise awareness and funding for research, with the International Myeloma Foundation sponsoring the “Myeloma Mobile” used by the Tuohy family for the trip.

“The reception we got was incredible,” Tuohy said. “We did 20 different events and met with different support groups, and we helped establish support groups in Denver and Washington, D.C.”

Tuohy”™s wife, Robin, directs IMF support groups in the Northeast.

Michael Tuohy”™s only regret is that the tour was not timed for he and his family to take in an IMF-sponsored concert this week in Los Angeles featuring Christopher Guest, Michael McKean and Harry Shearer. The trio wrote music and screenplays depicting the farcical heavy-metal band Spinal Tap, and The Folksmen group from the movie “A Mighty Wind.”

Giusti has attracted big-name supporters as well, with her honorary board boasting the likes of sportscaster Bob Costas and newscasters Ann Curry and Paula Zahn. The honorary guest for the organization”™s Oct. 27 Greenwich fundraising gala is bicyclist Lance Armstrong, the seven-time Tour de France winner who won a battle with cancer and has since become a prominent fundraiser for cancer charities.