ACKC in the Press
Newsday Article April 20, 2004
On a Mission to Cure Kidney Cancer
Activists Argue for More Attention and More Research
BY DEBBE GEIGER.
Jay Bitkower of Manhattan was 61 when he was diagnosed with kidney cancer.
His left kidney was removed, and now, three years later, Bitkower is free of cancer. But the experience altered how he looks at the disease and started him on a mission to generate more awareness for it.
Last year, Bitkower, a computer consultant, and a group of survivors started Action to Cure Kidney Cancer (ACKC), a nonprofit organization whose mission is to raise awareness and increase government and private funding for research. The survivors met at a support group in Washington, D.C., organized by the Kidney Cancer Association.
Although that organization includes advocacy as part of its mission to educate patients and work with medical professionals, Bitkower and the others left the meeting with the impression that little was being done to lobby Congress to spend more to screen for and treat the disease.
The members of the newly created group started doing their own research and soon learned that while the Department of Defense spends $150 million per year on breast cancer research, $85 million per year on prostate cancer and $10 million a year on ovarian cancer, nothing was being spent on kidney cancer. They discovered that National Cancer Institute funding is also disproportionate, Bitkower says. Of the 56 research programs conducted by the institute, 11 are dedicated to prostate cancer and 10 to breast cancer. There is only one funded for kidney cancer.
“There is no major investment by the federal government who, through the National Cancer Institute, does research,” he says. “There is hardly any private investment compared to other cancers. There is no private fund- raising for kidney cancer research. We realized if we didn’t form a grassroots organization, it would continue the same way, and more people would die and wouldn’t get treated.”
“What we’re looking for is fairness,” says Fred Atkin, a kidney cancer survivor from Commack who was diagnosed in 2001 and now serves as ACKC’s vice president. “We want a fair share of the research dollars.”
Kidney cancer specialists seem to agree. “It is a significant cause of death,” says Dr. Berton Zbar, chief of the Laboratory of Immunobiology at the National Cancer Institute. “It needs attention. There are about 35,000 cases of kidney cancer in the U.S. each year. The number of cases seems to be rising. It’s not entirely clear why.
“It seems to be rising faster in the African-American community than the [white] community, but it is rising in both.”
The numbers About 12,000 deaths result from kidney cancer each year.
Kidney cancer accounted for 3 percent of estimated new cancer cases among U.S. men in 2003, compared with an estimated 33 percent of new cases attributed to prostate cancer in the same year, according to the American Cancer Society.
Bill Bro, chief executive of the Kidney Cancer Association, noted kidney cancer’s status as “not quite a rare disease,” with more than 200,000 people in the United States living with it.
“When it comes to cancers that affect adults later in life, the sad reality is that they will always be under funded,” Bro says.
Unlike other cancers, there is no screening test to diagnose kidney cancer, and chemotherapy is not reliable. According to Dr. Walter Stadler, a nationally recognized kidney cancer researcher based at the University of Chicago Medical Center, most kidney cancer diagnoses are made by CT scan. When the cancer is confined to the kidney, symptoms include blood in the urine. Most patients exhibiting symptoms have advanced disease.
Surgery is the treatment of choice for cancer that hasn’t spread. For metastatic disease, the standard of care is either interferon alpha or interleukin-2, or both. These are both considered immunotherapy, Stadler says. Interferon-alpha has been demonstrated to improve survival, while interleukin-2 has been successful in 3 percent to 8 percent of patients with metastatic disease. Those patients have a 60 percent to 80 percent chance of long-term survival. “We have modest success with traditional chemotherapy … with 10 to 15 percent of patients experiencing tumor shrinkage, but we don’t know whether this actually improves survival,” Stadler says. “People who have metastatic disease that has spread beyond the kidney don’t have a lot of options,” Zbar says. “The options they do have are primarily what might be called experimental. More options are needed.”
Lobbying for awareness
Now Bitkower spends his days researching what treatments are on the horizon. He investigates where money would be best spent if he and the others succeed in obtaining their goals. As a group, they contact physicians and members of Congress to raise more awareness of kidney cancer patients’ plight.
“It’s become a full-time job,” says Bitkower, who, like the others, is not paid for his efforts.
The first step, they believe, is to get Congress to take notice. Recently, Bitkower and Atkin joined other kidney cancer survivors and physicians on a trip to Washington, D.C., where they gave messages to the House of Representatives Cancer Caucus.
“We hope that in this session of Congress there will be an appropriations bill that will start the process,” says Pat Thaler of Amagansett, a kidney cancer survivor who is active in the group and whose brother, former New York City mayor Ed Koch, has helped open some doors. “It’s a tough fight. There is a huge national deficit. There is a sense that Congress doesn’t want to increase appropriations. But this is our fight, and we will do whatever we can,” she says.
Bro, of the Kidney Cancer Association in Evanston, Ill., has been fighting the same battle for several years now and says ACKC has a point. “Clearly, there is disparate funding between kidney cancer and other genitourinary cancers,” he says. His group recently started a governmental affairs committee at Bitkower’s urging to help set the organization’s agenda for advocacy at the state and local levels.
Although he says he’s not sure why a separate organization needs to exist, he says he can appreciate why the survivors who are working for it are trying to fulfill their goals. “Understanding the urgency that seriously ill people without a definite cure for a disease feel, there is nothing I would do to discourage an independent effort.” Still, he adds, “the path to a cure for the disease is seldom a straight line.”
Stadler agrees, stating that progress often comes from unexpected sources. “If you focus funding very narrowly on a disease, it does not necessarily mean you are going to make better progress than if you focus funding more broadly. I’m always a little bit leery when organizations say we want funding for disease X, because you can not always predict where success in a field is going to come from. I think a broader vision is important.
“I think we’re far better off having a broader vision of funding that can be applied to various diseases and problems.”
Debbe Geiger is a freelance writer.