After support drops for Komen, new director visits St. Louis to bring focus to mission

2013-11-07T00:30:00Z 2013-11-12T10:48:04Z After support drops for Komen, new director visits St. Louis to bring focus to missionBy Michele Munz mmunz@post-dispatch.com 314-340-8263 stltoday.com

While giving a tour of his research lab to the new president of Susan G. Komen, the director of the breast cancer program at Siteman Cancer Center stopped in one of the aisles where scientists were peering through microscopes and boldly declared, “This group addresses why we haven’t cured breast cancer yet.”

Just six weeks into her job as president, Dr. Judy Salerno paid a two-day visit last week to St. Louis, where she met with community health centers and researchers who receive Komen grants to fight breast cancer, which 1 in 8 U.S. women will be diagnosed with.

St. Louis was the first stop of a year-long tour Salerno has planned to renew focus on Komen’s impact and maximize its resources. The fundraising powerhouse took a big hit last year over its plans to eliminate breast exam funding for Planned Parenthood, the country’s largest provider of women’s reproductive health services, including abortions.

Komen quickly restored funding to Planned Parenthood, but anger was stirred on both sides of the abortion debate. Nationwide, participation in Komen’s signature charity 5K race is down about 15 percent, said Komen communications director Andrea Rader. She said it was too early to estimate the financial impact.

The St. Louis Komen chapter, which serves 17 counties in eastern Missouri and southwestern Illinois, saw its funding for programs and research drop by about a third from last year — to $2.3 million from $3.2 million. It went from helping 25 breast health programs to just 13, staff said. Between 50,000 and 60,000 people usually participate in the annual Race for Cure 5K in St. Louis, but only about 40,000 participated this year.

Salerno took the helm from Nancy Brinker, who founded the breast cancer charity in 1982 in honor of her sister, who died of the disease. Salerno, a physician and health policy expert, now has the job of detangling the politics from Komen’s good deeds.

“My focus, and the focus of the organization, is on our mission, and we should never waiver from that,” Salerno said. “Unfortunately, breast cancer is an equal opportunity offender. It doesn’t matter if you’re Republican or Democrat or pro-life or pro-choice or whatever you call yourself. Breast cancer doesn’t care about that. We have to keep our eye on the prize, which is developing the best treatments and hopefully eradicating cancer. … This other stuff is just a distraction.”

How important Komen funds are in St. Louis was apparent as Salerno made her stops. Staff at the health centers greeted her with pink garb and massive welcome signs. Excited and nervous researchers, who credit Komen grants with getting their research off the ground, explained their projects with vigor.

“I saw 35 women with metastasized breast cancer yesterday, so you come away with a passion on needing to improve things,” said Dr. Matthew Ellis, the breast cancer program director at Siteman.

Breast cancer is solvable, Ellis stressed. The mysteries are unraveling every day.

“This is the most exciting time in breast cancer research,” he said. “Now is not the time to stop. Now is the time to double our efforts.”

Over the next year, Salerno plans to touch base with nearly all the 120 Komen chapters across the country through visits and regional meetings.

“We have the largest grass-roots efforts of any advocacy group. It’s the backbone of our organization, so I need to talk to everyone and see how we’re doing, and see how we are going to align our resources to do the most we can when money is tight. How can we maximize investment to touch more lives?” Salerno said. “We have to figure out how to be most effective and efficient. We are trying to find out how we can go to the next level.”

Komen has had its share of detractors and criticism over the years: for not giving a bigger chunk of its money to research, aligning itself with corporate sponsors who some considered to be dubious and paying Brinker too much. But it’s by far leading the way in private funding, investing more than $800 million in breast cancer research and $1.6 billion in screening, education and treatment programs in more than 30 countries since its inception. About $28 million has gone to the St. Louis area since the chapter started in 1999.

Currently, eight Komen grants totaling $15.1 million are helping researchers such as Dr. Ron Bose at Washington University School of Medicine, who is studying why some late-stage breast cancers are resistant to drug treatments. Bose credits Komen grants with helping establish his lab.

Funding from organizations like Komen are increasingly important to advancing research as federal funding shrinks, Ellis said. The Planned Parenthood flap was a frustrating diversion.

“It reflects the poisonous politics of our time. But we can’t let that get in the way. We have to move past that, because we have to support groups like Komen because we are ever more reliant on them,” Ellis said. “The voices of patients and researchers have to be louder.”

Ellis and Washington U. breast surgeon Dr. William Gillanders are recipients of Komen’s few and prestigious “Promise Grants” for their research – together totaling more than $10 million.

Rather than working with decades-old anonymous cell lines, Ellis’ lab is taking samples of incurable tumors from women, replicating them in mice, sequencing the genes and learning which drugs won’t work. “It’s a great copy of what is going on in that patient,” Ellis said. “We are actually developing a road map on how to treat that patient, so we don’t waste any time.”

Gillanders is about to begin testing personalized vaccines in women that would be given to patients after they go through chemotherapy and radiation to prevent the cancer from returning. The vaccines will be developed based on the genetic mutations of the tumor.

“No one would ever have imagined that (Washington U.) would have two Promise Grants,” Gillanders said.“We are learning so much by sequencing these tumors, and two promising therapies are coming out of this sequencing effort.”

Breast cancer is a highly heterogeneous cancer with at least five different subtypes, each with different outcomes, genetic anomalies and drug responses.

“When we talk about breast cancer, there are so many variants,” Salerno said. “As we learn more about the genetics, we can tailor treatments. And I think that is so important, to let the public know what we’re doing to help researchers figure that out.”

The researchers say their findings will help lead to breakthroughs in other diseases as well. “A lot of pioneering studies in cancer biology are done initially in breast cancer because of the impact of Komen funding,” Gillanders said.

Before leaving each meeting where researcher teams flipped through their published studies with Salerno and showed off their charts, she urged them to get the word out about how those studies were made possible.

“I hope that when you get out there, you tell people how you’re supported by Komen,” she said. “So people know when they get out there and run a race or click on that button to donate, that this is what it goes for.”

Michele Munz is a health reporter at the Post-Dispatch. Follow the health news on twitter at #STLhealth

Copyright 2015 stltoday.com. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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