Empowering Patients to Get on the Right Treatment Track: Why “The Big C” May Be Communication…
Deirdre Coleman speaks to Andrew Schorr, medical journalist and two-time cancer survivor and founder of Patient Power, about his mission to arm patients with the latest information in drug therapies and the role pharmaceutical companies play in patient communication.
“When I received a diagnosis for Chronic Lymphocytic Leukemia (CLL) at age 45 back in 1996, I was faced with a bleak prognosis and was advised by my local oncologist to undergo chemotherapy immediately that would halt the disease’s progression for four years. He explained that I could then be re-treated with the same chemo and, with luck; it would keep the cancer at bay for two more years. Then, he told me, I would be out of options.”
“Fortunately for me, a tech-savvy friend suggested I join a “newsgroup” – an online community where patients chat about their conditions via email and web postings. I found one for CLL at the Association of Cancer Online Resources (ACOR.org) and I connected with a patient leader and CLL survivor, Barbara Lackritz, who implored me to seek a second opinion with a clinical research oncologist specializing in CLL to find out about the latest treatments as well as those still in development.”
“I asked other members of the newsgroup for recommendations and the name Michael Keating, MD - a leukemia specialist - kept coming up. He was running clinical trials at the University of Texas MD Anderson Cancer Centre in Houston. I asked Dr Keating for a second opinion and because my leukemia wasn’t aggressive his recommendation was not to undergo immediate treatment as there was a 15% chance that the CLL wouldn’t progress further. He explained that if I had immediate treatment, the cancer could become drug resistant, reducing my odds of long-term remission. After he gave me confidence that better treatment was available, [my wife and I] decided to go ahead and have our third child, four years later I enrolled in a clinical trial at MD Anderson. For six months in 2000, I was treated with a combination of standard chemotherapy for leukemia and an experimental medicine, a monoclonal antibody called rituximab (Rituxan). Now experts are saying my long-term remission may actually be a cure.”
Empowering Patients with Knowledge
Andrew’s decision to become an informed patient and reach out to other CLL patients meant he was given the option of specialist treatment, receiving a drug 10 years before approval – ultimately it saved his life.
A gulf exists between the information held by medical specialists and experts, the pharmaceutical industry and the patient. I don’t believe it should be that way.
In 2005, he went on to found Patient Power, an online community with a mission to empower patients with knowledge on the specialist treatments available for their specific conditions, the latest medical advancements and clinical trials information. His goal is to facilitate patients’ search for answers and their quest for support on their treatment journey.
“The aim of the patientpower.info (and patientpower.eu) website and my work in general, is to give patients access to the latest information specific to their condition, to allow them to make informed decisions and choices on their treatment options. Patients are often not privy to the latest innovations in treatment modalities and a gulf exists between the information held by medical specialists and experts, the pharmaceutical industry and the patient. I don’t believe it should be that way. My job is to facilitate this information flow and empower patients to make informed decisions and choices. Regulations prohibit pharmaceutical companies from direct-to-consumer promotion so they are limited in the conversations they can have directly with patients.”
Towards Personalized Medicine
Andrew’s devotion to disseminating leading-edge information comes at a pivotal time. The advances in the treatment of cancer and other chronic illnesses are encouraging, with a movement away from the “catch-all” approach on which cancer therapies had previously been based to a more precise targeting of cancer cells, while sparing normal healthy tissue.
“The field is moving toward using the right drugs at the right time in the right patients,” says Dr. George Demetri, senior vice president of experimental therapeutics at the Dana-Farber Cancer Institute. “We’re moving toward a more precise understanding of cancer, and being able to tailor therapies toward an individual’s cancer.”
Personalized medicine is a promising concept. As patients are divided into groups based on their individual, biological, genetic and genomic characteristics, medical interventions are tailored to those patients’ needs. Hence, this new approach can help reduce the risk of undesirable adverse reactions, and at the same time make medicine more effective. Personalized medicine is an innovative, efficient and patient-centred alternative to the one-size-fits-all medicine.
“Most cancer therapies are specific to neither the individual patient nor the relevant underlying molecular features of a particular cancer,” Andrew noted. “Therapies that target specific genes represent the future of oncology treatments. I personally have benefited from a targeted therapy that pinpoints the JAK2 gene when I developed a secondary cancer, Mylofibrosis, in 2011. This novel treatment allows me to take two small white pills each day (Jakafi), turning what would have previously been a serious cancer into a manageable chronic condition that can be treated orally”.
Precision medicine is fundamentally changing the way we think about cancer drug development. In 2012, the FDA established a "breakthrough therapy designation" to hasten approval of experimental drugs that show striking benefits in early trials, including those targeted at cancer mutations.
Communication is Key
The patient who needs to hear what’s coming down the track is out of the loop. Unfortunately, many patient advocacy groups operate independently rather than collaboratively.
“While these developments are encouraging, for us at Patient Power and through the Patient Empowerment Network, a non-profit I established with other patients and caregivers, the task is to create a database of patients and utilize the latest advancements in technology to keep patients informed as to the latest innovations in drug development and treatment modalities. Pharmaceutical companies are effectively stymied from approaching patients directly with this information due to a highly regulated environment and because many of these treatments are awaiting FDA approval or are still being trialled. The patient who needs to hear what’s coming down the track is out of the loop. Unfortunately, many patient advocacy groups operate independently rather than collaboratively. Turf battles and fights over funding get in the way of helping patients. I as a cancer survivor and journalist try to steer clear of this and use communications technologies like a laser beam to give patient’s access to knowledge of what could be the best tailored treatments for them.”
“Another challenge, of course, is to ensure that a patient’s doctor is in the know too. That’s why our video interviews with medical experts are also posted on oncologytube.com. In two years those videos, with no CME (Continuing Medical Education Funding), have been viewed almost 430,000 times by doctors! Using the Internet, shooting video interviews with experts, posting them rapidly for patients and their doctors is filling a gap. It’s something pharma cannot do itself and cannot control but should support and welcome.”
Improving Patient Access
Major advances in healthcare are just around the corner, with a wealth of new possibilities promised for patients through the increased adoption of personalized approaches to medicine. But if the potential is to be realised, changes will be necessary in the way medicines are developed, regulated, and rewarded. Greater collaboration will be needed across a wide range of actors in healthcare.
Involving patients in treatment-related decision making is in line with the increasing acknowledgement of patients’ rights to autonomy and self-determination.
A core aim of personalization is to acknowledge the position of patients at the centre of the endeavour, not merely as receivers of care but actively contributing and participating in the process of care. Involving patients in treatment-related decision making is in line with the increasing acknowledgement of patients’ rights to autonomy and self-determination. Success will require higher levels of health literacy among patients and the wider population, as well as readiness - and skills - among healthcare professionals to engage more closely with patients in discussing treatment issues and options. Patients who are able to seek knowledge, to understand what is being communicated, and who can judge what is appropriate to their own situation, as well as follow treatment regimes precisely, are always more likely to have better outcomes.
Pharmaceutical companies in collaboration with patient groups have a vital role to play in increasing patient literacy and empowerment and regulatory systems need to play catch up with science to allow for greater interdisciplinary cooperation and collaboration and more timely access to targeted medicines.
Andrew Schorr will be sharing his amazing story as well as explaining how empowered patients and the industry can work closer together for mutual benefit at eyeforpharma Barcelona 2014 in March. For more information on his presentation or to see which industry leaders will be in attendance, visit the official website.