Sisters turn adversity to hope after diagnosis of cancer

It has been nine years since Kathy Giusti was diagnosed with multiple myeloma, an incurable form of blood cancer with one of the lowest five-year survival rates of any cancer.

“My daughter was 1 at the time. My goal was to see her go to kindergarten,” Giusti recalled.

Last month, she saw her daughter off to sixth grade.

“It’s a nice story,” said Giusti, a New Canaan, Conn., resident who since has also given birth to a boy.

Scientists and cancer survivors say more people are alive today because of the work Giusti has done since 1996. The former pharmaceutical executive and her twin sister, Karen Andrews, have started not one but two separate nonprofit organizations dedicated to jump-starting research into multiple myeloma. The Multiple Myeloma Research Foundation has raised $47 million for research, and the Multiple Myeloma Research Consortium has forged a scientific alliance of seven major cancer research institutions and created the first multiple myeloma tissue bank.

“Kathy and her sister Karen have turned adversity into an opportunity for multiple myeloma patients worldwide and gave them hope for a better life,” said Dr. Ken Anderson, chief of the division of hematologic neoplasia at the Dana Farber Cancer Institute in Boston. Anderson serves on the boards of the foundation and consortium.

When Giusti was first diagnosed in 1996, the only treatment options available for the approximately 14,000 people diagnosed with multiple myeloma each year in the United States were chemotherapy and stem cell transplantation, which is designed to replace blood cells destroyed during chemo.

Those treatments often bought patients a reprieve from cancer, but there remains no cure.

“It is hard enough to be diagnosed with a cancer, but it was unbelievable to be diagnosed by one that is uniformly fatal,” Giusti said.

She took a survey of research activity at drug companies and academic institutions and found that little work was being done on the disease.

“I told my sister that this looks pretty dismal,” she said.

Giusti and Andrews set about to change that outlook. In 1998, they formed the Multiple Myeloma Research Foundation to raise money and promote awareness of the disease. They went a step further and took an active role in promoting the development of promising research at drug companies and federal regulatory agencies.

The creation of the foundation coincided with the discovery that a notorious drug called thalidomide seemed to halt the progression of blood cancer in many patients. Thalidomide was taken by many pregnant women in the 1960s to ward off morning sickness. After the drug was discovered to cause serious birth defects, it was approved only to treat patients with leprosy. Giusti said the foundation began educating the public and physicians about the potential benefits of the drug, which is now commonly prescribed for multiple myeloma patients who have had a recurrence.

Thalidomide, however, is not a cure. So the foundation aggressively has backed the development of two new multiple myeloma drugs. Velcade, designed for patients whose cancer has become resistant to treatment, was approved in 2003. Revimid, an immune-system booster, is now in Phase III trials.

“We went from no drugs to three since we started,” Giusti said.

Linking drug companies and academic centers developing promising new treatments was one of Giusti’s goals in 2004, when she formed the Multiple Myeloma Research Consortium. One of the consortium’s initiatives was to create the first multiple myeloma tissue bank. New drugs under investigation can be tested on tissue from multiple myeloma patients. The hope is that successful tests will prompt pharmaceutical companies to develop the new drug, Giusti said.