PLEASE READ THIS WONDERFUL BLOG WRITTEN BY JAMIE RENO HIGHLIGHTING THE GOOD PURPOSE AND MISSION OF IMMUNOTX AS AN EDUCATIONAL AVENUE TO COLLABORATE WITH PATIENTS.
FEW HIGHLIGHTS MENTIONED IN THE BLOG WRITTEN BY JAMIE RENO.
Global Conference Timed Perfectly
ImmunoTX Summit 2018, a timely global conference in San Diego put on by GTCbio.
Renowned scientists, biopharma and supporting company executives, and patients and patient advocates will participate in lively forums that take close look at some of the latest immunotherapeutic issues and breakthroughs.
Among the people who will attend this conference are:
Joost Oppenheim, senior investigator from the National Institutes of Health’s National Cancer Institute, Blythe Sather, associate director of Juno Therapeutics, Ling-Yang Hao, principal scientist, immunology biomarkers at Janssen R&D, Albert J. Wong, of the cancer biology program, neurosurgery at Stanford University Medical Center, and Gordon Freeman, professor of oncology at Dana Farber Cancer Institute at Harvard University.
Satish Medicetty, A Soft-Spoken Visionary
The man behind this big event is Satish Medicetty, a scientist and biopharma executive I met recently here in San Diego. A soft-spoken visionary, Medicetty, who was born and raised in India, came up with the idea for a new kind of global conference company that brings all stakeholders together for high-impact discussions and the sharing of ideas.
The most interesting and commendable part of Satish’s strategy, in my view, is including the human element. That is, making patients and patient advocates a very real and respected part of these high-minded science get-togethers.
Bringing the patients into the mix? What a concept!
“Most conferences do not have active participation from patients, who we believe are key stakeholders that often don’t have a chance to communicate with researchers and clinicians,” Satish says.
Inspiration from Kamala Maddali
Satish, who’s creating platforms that are “amenable for patient participation,” also credits his friend and colleague Kamala Maddali, who has helped GTCbio attract courageous cancer patients and prominent patient advocates to his conferences.
Maddali is a senior executive with Cancer Genetics Inc., a global company whose state-of-the-art diagnostic technologies help determine what will work best for each individual cancer patient and light a path for biophamaceutical companies working with immunotherapies.
Kamala, who’s also vice chair of the Philadelphia Chapter of Women in Bio, and scientific advisory member for the International Cancer Advocacy Network, is a kindred spirit of mine.
Like me, she never lets pharma executives forget why they’re in business. It’s all about the patients. But she does it in a kind and inclusive way.
“Kamala’s passion towards patient engagement was the main driver to bring her on board as a strategic advisor to GTCbio,” Satish explains.
“Kamala has been focusing on identifying the right individuals and groups to facilitate patient participation at the upcoming immunotherapy meeting. We expect to receive similar guidance from Kamala for our other conferences as well,” Satish says.
Kamala Shares Her Perspective
Kamala says her life journey has taught her that as humans we have to be doing humane business that impacts and helps other lives. Science coupled with compassion is a business model built for success, she explains, especially in the worldwide healthcare community.
“We have to invest our mind, heart and money into positive business solutions with passion to help others,” she says. “I would like to see more collaboration among patients, physicians and pharma partners via round tables, conferences and panel discussions.
Kamala says Satish’s vision is closely aligned with hers and they are both focused on making an impact on the healthcare community by championing these focused educational symposiums.
“We’re living in an evolutionary time, a sort of renaissance for cancer therapy,” Kamala says.
“In the past, when we would do clinical trials we would try to get tumors of the same type and assess their response to a new therapy in comparison to a current regimen,” she explains.
“Now, rather than looking at histologic sub-types, we’re looking at mutations and activation of specific pathways. That’s a fundamental change in the way that we treat cancer.”
Kamala says patient sample testing plays an enormous role in determining whether a patient is a suitable candidate for an immunotherapy.
“These new immune therapies are very expensive, so you really want to make sure that patients are likely to respond to them,” she says. “For one of the non-small-cell lung cancer drugs there’s a companion diagnostic, which means there’s a requirement to test for the presence of PD-L1 on the tumor in order to receive the drug.”
We are seeing a fundamental change in how an oncologist treats and listens to a patient. Patients and their families are more informed and involved.
Patients Becoming Part of the Team
Giving a voice to patients at these science forums, and in doctors’ offices, is not only kind, it’s smart. Patients and their support groups are more engaged in and informed about their treatment options and their cancer than ever before.
Taking charge of your healthcare is never about disrespecting physicians. On the contrary, I have great admiration for most of my doctors. It’s simply about being your own best advocate.
Standing up for yourself, and making educated decisions about your own body that you have every right to make, is a surefire way to improve your odds of survival.
It’s about listening to your doctors but also getting second, third and fourth opinions and embracing anything and everything that can help you stay healthy, including nutrition and, yes, natural supplements.
Cancer Survivor Coming to Conference
Granted, being a patient advocate isn’t easy when you’re a patient yourself and you sometimes get sick or deal with physical pain. That’s where caregivers come in. They, too, are advocates and they have become a larger piece of the cancer equation than ever before. Bless the caretakers!
Nicole Bhat is a caregiver, and then some. She is a remarkable woman whose husband, Shahzad Bhat, has been courageously fighting diffuse large B-cell lymphoma (DLBCL).
Nicole, who lives with her husband and their 10-year-old son in Las Vegas, did nothing less than save Shahzad’s life by finding the right treatment for him and negotiating, gently but wisely, with their insurance company to see that his treatment was covered.
It’s a love story of the greatest kind imaginable. They met in Madras, India while she was attending Semester at Sea in college. She was instrumental in getting Shahzad covered for CAR-T at Stanford University.
Stanford’s First Yescarta Patient
Shahzad was the very first patient to be treated with Yescarta at Stanford since the drug was approved by the FDA, and just the 7th patient in the United States to be treated with Yescarta. Shahzad had seen multiple treatments fail. Last October he was given three months to live. But Nicole closely monitored the progress of immunotherapies.
One month after he was told he had three months to live, he obtained referrals from three different cancer centers stating that he was a candidate for Yescarta, which was approved by the FDA literally just weeks prior to these referrals.
Nicole presented a proposal to the couple’s insurance company shbowing how CAR-T is actually less expensive than long-term chemo or other treatments. She convinced the company to cover the procedure.
And just after Christmas, his T-cells were injected back into his body. He had only very mild cytokine release syndrome, which is typically the most severe side effect of CAR-T. And there was no neurotoxicity.
I’ve been following CAR-T since he was diagnosed and have always wanted it,” Nicole says. “Finding a suitable trial was beyond difficult. The Yescarta approval by the FDA was perfect timing.”
Shahzad and Nicole, who will be attending the ImmunoTX Summit next week, are encouraged by immunotherapy and how it will eventually target many other proteins for blood cancers, and organ cancers.
“It’s still very new. There are many unknowns, but advancements are being made every day. Doctors and nurses have learned how to recognize and treat the side effects early on,” she says.
As Nicole notes, new clinical trials are looking at ways to eliminate cytokine release syndrome altogether. For me, mitigating the harsh side effects is key. And the companies in the immunotherapy sector are doing just that.
“It’s really just the beginning for immunotherapy, with a long way to go,” Nicole says, “but it’s more promising each day.”
A Hero for Many Cancer Patients Remembered
One person whose memory will be appropriately honored during the conference is Tom Marsilje, an oncology drug discovery scientist and co-inventor of the non-small cell lung cancer drug ceritinib who sadly died of colorectal cancer (CRC) in the fall of 2017.
Tom, a brilliant scientist and writer, was diagnosed with CRC in 2012. He had a unique and powerful perspective as both a stage IV cancer patient and a renowned cancer drug discovery scientist.
His advocacy began when he became a Colon Club featured survivor in its 2016 Colondar 2.0 annual magazine, which brought national awareness to early-onset CRC.
Tom also helped create and run as lead scientist the COLONTOWN CLINICS CRC Clinical Trial online communities.
Tom’s legacy of patient empowerment and the search for better treatments – both as researcher and patient – remains at the core of the work of PALTOWN, which empowers patients by creating disease-specific communities to address information needs, social isolation and much more.
During the conference, the Paltown Development Foundation will be hosting a fundraiser and celebration of Tom’s life on Tuesday, January 30, at the Mission Brewery in Downtown San Diego.
Proceeds go to support both the Paltown Development Foundation and the San Diego Center for Precision Immunotherapy. Additionally, this event is supported by the UC San Diego Moores Cancer Center, which is my personal cancer hospital, and the La Jolla Institute for Allergy and Immunology.
PALTOWN is determined to develop Tom’s Trials dream: raising continuing support for PALTOWN’s patient-powered communities where disease-specific clinical trial discussions are a central focus.
For details please click on the link below: