Cancer treatment progress stunted by lack of volunteers

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• HARI SREENIVASAN:

  Last year, there were an estimated 1.7 million new cases of cancer diagnosed in the United States, and almost 600,000 people died from the disease, according to the National Cancer Institute, making cancer the second leading cause of death in the U.S. While more than 2,000 immunotherapy drugs are currently in development, a relatively small number of U.S. cancer patients participate in a key part of the research process — the clinical trial. In tonight's signature segment, NewsHour Weekend's Christopher Booker reports on efforts by researchers to improve that low participation rate in cancer trials and to improve data sharing by doctors all in the hope of extending and saving lives.

• CHRISTOPHER BOOKER:

  Andy Daigle didn't think he would make it this far. A few years ago, the now 61-year-old business manager for Subaru in Louisiana was diagnosed with kidney cancer, an illness that kills nearly 15,000 Americans every year.

• ANDY DAIGLE:

  August 13th of 2013, easy date to remember. He said, "you have a mass on your kidney."

• CHRISTOPHER BOOKER:

  Following multiple surgeries, including the removal of his kidney, Daigle is currently cancer free, but the path he took to get there, is rare. He's among the less than five percent of American cancer patients who participate in clinical trials. Daigle was part of a trial for the drug, Pazopanib, which was being studied for people who have recurring tumors. Being part of the trial meant extra care.

  But as with other patients, he didn't know if the trial would save his life, give him a bit more time to live, or do nothing at all.

• ANDY DAIGLE:

  The trials, as they were explained to me, not a cure. It's just about life extension. Like, if this would get you an extra six months, an extra year, an extra two years. Because there is no cure for what I have, all we can do is manage.

• CHRISTOPHER BOOKER:

  For his doctor, Scott Delacroix, how and why Daigle responded to the trial as he did is actually unknown.

• SCOTT DELACROIX:

  The effect on the individual patient for a clinical trial is never known. Right now, he's, he's got no evidence of cancer. So he's doing well, okay. He's watching his grandkids grow up. The only way to answer that question though is not looking at one patient, mister Daigle. It's, once the trials are fully accrued, what does a population of patients do?

• CHRISTOPHER BOOKER:

  Researching, developing, and getting approval for new cancer treatments is often a slow and arduous process.

  But without participation from patients like Andy Daigle, it takes longer to make medical advancements.

  While willingness to participate is one thing, access is another. About 90 percent of cancer patients are treated outside of major research hospitals, where the bulk of clinical trials occur. The smaller facilities they do visit for care often lack the funds or logistical support to run trials.

• SCOTT DELACROIX:

  I don't think it's an unwillingness on the patient's' part. I don't even think it's an unwillingness on the physician's part. It's really a systems error, with the fact that patients don't have access, unless they are willing to travel.

• CHRISTOPHER BOOKER:

  For years nearly all of the cancer clinical trials in Louisiana were taking place at Charity hospital in downtown New Orleans.

  But then came hurricane Katrina, the storm flooding the bottom floors of the hospital, forcing its closure and shuttering the state's primary cancer research center.

  For the researchers, the destruction presented an opportunity. With financial assistance from the National Cancer Institute, Louisiana State University doctor Augusto Ochoa and his team, helped re-envision Louisiana's clinical trial infrastructure. Rather than return to the centralized model, they looked to the broader oncology community in the state to build a network of researchers.

• AUGUSTO OCHOA:

  After Katrina, our only choice was to start working with community oncologists and community sites. I think this is a winning approach to bring clinical trials to the patients . They cannot be exclusively provided in specialized cancer centers.

• CHRISTOPHER BOOKER:

  What started with just a handful of sites, has grown to a much wider network. Now called the Gulf South NCORP clinical trials network, the group consists of 22 treatment facilities and more than 90 investigators, including doctor. Delacroix's practice in Metairie, Louisiana.

• SCOTT DELACRIOUX:

  How are you doing?

• FERDINAND ROSEMAIN:

  I'm doing great sir.

• CHRISTOPHER BOOKER:

  Once a month 69-year-old Ferdinand Rosemain comes in to the clinical trial treatment for his stage four prostate cancer.

  Living more than 30 miles from New Orleans, he may not have had access to such a trial under the previous, centralized system.

• FERDINAND ROSEMAIN:

  Yep, that's it?

• CHRISTOPHER BOOKER:

  The data collected from his trial is now shared with the Louisiana group – a crucial part of this new research network.

• SCOTT DELACROIX:

  If we're able to push clinical trials into the community, it's gonna give one, researchers the ability to answer questions that otherwise would take a lot longer to answer and two, it provides access to these clinical trials that otherwise patients don't– don't have access to.

• CHRISTOPHER BOOKER:

  Louisiana's effort has tripled the number of patients enrolled in clinical trials, the network now within reach of 80 percent of louisiana residents and even parts of Mississippi.

  Giving doctor David Hanson and his patient's at the Mary Bird Perkins Cancer Center in Baton Rouge access to the same trials and information as those in doctor Delacroix's office.

• DAVID HANSON:

  The patients come from about a ten parish area which surrounds Baton Rouge. Many of them are medically disadvantaged. Either have no access to health care or have Medicaid that puts pretty significant restrictions on the kind of care they can get or the practitioners they can see.

  Bolstered by a five point six million dollar grant from the national cancer institute in 2014, louisiana researchers are trying to improve access for minorities and rural residents. These are populations that represent a significant number of patients seen by doctors at the cancer center.

• CHRISTOPHER BOOKER:

  What has prevented minority groups and underserved groups from participating in clinical trials? DAVID HANSON: Well, you have to have access to care and access to a practitioner that's interested in doing that. And then often times if you participate in a clinical trial there are extra visits or extra issues that come along that make it more difficult. And so when a person looks at a menu and sees that they might have to come more often or on a very regulated basis because of the trial, they may turn that down.

  The Baton Rouge center has hired more researchers and nurses to assist with the trials and recruit more patients. Thirty percent of the clinic's minority cancer patients are now enrolled in clinical trials. While Louisiana is pushing participation, a New York city company believes the broader sharing of data holds tremendous promise.

• ZACH WEINBERG:

  Everybody wants better drugs faster. It's better for patients, it's better for physicians, it's better for pharmaceutical companies. One of the challenges in research is simply it's slow and expensive.

• CHRISTOPHER BOOKER:

  Zach Weinberg is one of the co-founders of Flatiron Health. Launched in 2012, Flatiron has 450 employees — software engineers, nurses, and doctors — who have developed what they call a learning healthcare platform. It's a cloud based patient treatment database where every patient is anonymized, but their medical records are accessible to the clinicians, researchers, universities and drug companies who use it. The company has received funding from pharmaceutical companies and venture capital firms, including an arm of Google's parent company.

• ZACH WEINBERG:

  I think the electronic health record shift is a similar style infrastructure shift to the cell phone, which is we took all of these folks who essentially were disconnected from the grid, and we gave them a phone, and now they're fully connected. In health care what we're doing is something really similar. Whether it's identifying patients for clinical trials, making treatment recommendations or even just helping physicians figure out what other docs are doing for similar types of patients.

• CHRISTOPHER BOOKER:

  Bobby Green heads Flatiron's clinical development team of the electronic medical records, but he is also a practicing oncologist. Every week he returns to his West Palm Beach, Florida clinic to treat cancer patients and test the company's system himself.

• BOBBY GREEN:

  You actually can't do this without people who understand the science of oncology, without people who understand the practice of oncology, without people who really understand what happens in the real world, day to day, in an oncology clinic.

• CHRISTOPHER BOOKER:

  Often, doctor Green is shadowed by other employees from Flatiron, watching him interact with the software and patients. The record of what he's doing, entered into Flatiron's database.

• DR. BOBBY GREEN:

  Every patient who walks in and out of that exam room on a different day has an experience, has something that they've gone through. And most of the time, no one has really learned from that experience. Whether they had a particular mutation or a particular biomarker and had a really good outcome or a really bad outcome, that knowledge and that information really gets wasted.

• CHRISTOPHER BOOKER:

  Wasted, because before cloud computing, doctor Green says it was very difficult to compare large data sets, the information often siloed or stuck in the clinic or point of care. If he was able to access that information, connecting the data would had to have been done manually, and only if it cleared the necessary regulatory hurdles.Flatiron's network allows him to make these comparisons which he hopes might one day allow him to understand why William Lott has responded to his treatment the way he has.

• DR. BOBBY GREEN:

  Will, for example, has lived a lot longer than the average patient with the colon cancer that he's had, and continues to do really well, much better than I think any of us would've expected.

• CHRISTOPHER BOOKER:

  Doctor Green has treated Lott for 16 years.

• DR. BOBBY GREEN:

  Is there a biomarker that he has? Does it have something to do with the fact that he had multiple myeloma before and got certain treatments related to that? We just don't know. But put that information together across a national database of cancer patients and it can be really valuable.

• CHRISTOPHER BOOKER:

  Five years since its launch, the company says 2500 oncology clinicians use and contribute to its database, which currently has almost two million patients. That's one out of every eight cancer patients in the country.

  With the effort to bolster cancer research and data ongoing, not just in New York but in places like Louisiana as well, the hope is new treatments will emerge sooner.

• ANDY DAIGLE:

  You know, what I'm thinking is what I went through and the treatment, maybe sometime, five-ten-15 years in the future, somebody else will get this, and what helped to– discover along the way would keep them from an early death, keep them living longer, keep their quality of life longer. If I was guinea pig for that, that's, you know, you can't ask for much more than that in life?