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Cancer ResearchMultiple Myeloma

Meeting of Hearts & Minds: Connecting Patients with Cancer Researchers

It’s quite common for patients with cancer to form strong bonds with their oncologists. But it’s not often that patients form connections with researchers, the very scientists who develop cancer therapies that help patients, especially patients facing cancer.
December 2016 Vol 2 No 6
Laura Morgan

The sheer mention of the word “scientist” may conjure up images of crazy hair, glasses, and lab coats. Although this stereotype is often not far from the truth (except maybe for the hair part), scientists are not just detached and uncaring intellectuals: they offer hope to patients, which is exactly what Karuppiah Kannan, PhD, Associate Director at Takeda Oncology, did for Donna Cowan. 

Donna was diagnosed with high-risk multiple myeloma in 2013 at age 70, and was given 2 to 3 years to live. Unwilling to sit back and let the disease control her, she decided to enjoy life to the fullest. 

Moving Mountains for Multiple Myeloma

In May 2016, Ms Cowan participated in the Conquer the Canyon challenge, and hiked the Bright Angel Trail in the southern rim of the Grand Canyon. 

The hike was part of the Moving Mountains for Multiple Myeloma program. The program brings together patients, caregivers, healthcare professionals, researchers, and others to raise awareness and money for the treatment of multiple myeloma. 

During the hike, Donna met Dr. Kannan, a scientist who develops drugs to fight multiple myeloma and other cancers. Their friendship blossomed, which helped to dispel popular misconceptions about scientists, cancer drug development, and the pharmaceutical industry.

Cancer Drug Development

To say that the drug development process is complex would be an understatement. According to Dr. Kannan, it can take up to approximately 5 to 10 years before a drug is even tested in people, because its safety and effectiveness need to be established before they are tested in humans through many iterations. Overall, it can take up to anywhere from 5 to 20 years to get a cancer drug approved by the FDA, and only 5% of all cancer drugs in development actually get approved by the FDA. These are the odds that cancer researchers are working against every day.

“When I met with Donna and 2 other patients in the Conquer the Canyon event, there were certain snippets of what I do in my daily life that, when I shared with them, it dawned on them that ‘geez, this is how long it takes for drugs to get approved,’” Dr. Kannan said. 

“Patients usually don’t get that kind of a science-based time scale. They usually know from clinical trial and onwards, but they don’t know how long it takes to develop even before it hits the clinic,” he said. 

Finding the motivation to continue his efforts can be challenging at times, he admits, but Dr. Kannan’s unwavering dedication comes from knowing that patients with cancer, like Donna, need new therapies.

“When I see Donna and others as living proof, they are the validation for my hard work. I can continue to look up to them, and then say, ‘Because of my hard work, somebody is benefitting.’ That is positive reinforcement for us to work even harder,” Dr. Kannan said. 

Communication Promotes Understanding

The pharmaceutical industry is fraught with negative reports in the media. Pharmaceutical companies are often criticized as greedy and focused on profits only. You rarely read about scientists, like Dr. Kannan, who miss Thanksgiving and Christmas dinners year after year to tend to their experiments that involve potentially life-saving drugs. 

“We hear a lot of the pharmaceutical costs, ‘oh they’re so expensive’ and ‘they won’t be approved by the FDA.’ As a layman, you hear those things all the time, and you don’t put it back to say ‘That’s not what it’s all about,’ until we have our conversations about it. We never get to a point to thinking about scientists, and what they’re doing,” said Donna. 

“Meeting with Kannan has made all the difference in my travels through multiple myeloma. Even though this disease is not curable, I’m not going to think that way, because I know that Kannan is on my side, and if there’s anything he can do, he’ll do it,” she said. 

The meeting was an eye-opening event for Dr. Kannan as well. Scientists typically focus on finding a cure and may not always place emphasis on how the drugs affect patients’ quality of life. For example, Donna switched from an intravenous program to an oral administration therapy, which was a more convenient, less toxic treatment option that improved her quality of life. For the first time in 3 years, she was able to leave her home for more than 2 weeks. 

“When you have this option of a less-toxic oral drug, suddenly you are liberated, you are carrying your drug with you, you can travel; these are the things that matter a lot to patients–their quality of life; that never struck with me before I met Donna,” said Dr. Kannan.

“Now, when I meet with my scientists on a daily basis, I am telling them ‘look, it’s one thing to extend life and cure cancer, it’s another thing to give days to patients that they can actually enjoy,’” he stressed. 

Keep an Open Mind

Dr. Kannan emphasized the importance of speaking to patients like Donna to learn more about what they desire from treatment. Scientists are not typically privy to this information, because, for the most part, patients have these discussions with their doctors. The hike was a rare opportunity for Dr. Kannan to interact with patients. 

“Forums where both scientists and patients can exchange information I hope happen more in the future, because there will be more understanding from both parties, and then we will go even further to try to improve what other hardships the patients are experiencing,” Dr. Kannan said.

Donna agreed that events that bring scientists and patients together are invaluable and mutually beneficial. 

“One of the most powerful words that happened on the trail was in the morning after the hike. We were watching the sunrise over the Grand Canyon, and as I walked on the ledge, there wasn’t anything around me, except for that Grand Canyon—that gorgeous, beautiful Grand Canyon. And knowing that I was here, the tears just ran down my face: it was just so powerful. And as I turned around to step back down, I could hardly see; I had a hold of the tree that was behind me… a hand came out to me, and that hand was Kannan’s. As I stepped down off the ledge, he put his arm around me and said ‘I got you.’” 

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Last modified: December 4, 2017

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