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Novartis: From Patient to Patient Advocate: How a Cancer Diagnosis Fueled a New Career Path

Elyse Spatz Caplan's cancer diagnosis impacted her life in more ways than 1.

Spatz Caplin, far right, with her family

Originally Published by Novartis.

Almost 30 years ago, Elyse Spatz Caplan's oldest son hopped on a bus to go to summer camp while she drove to the hospital for surgery. A young mom of 3 boys under the age of 8, she had recently been diagnosed with breast cancer and was dealing with feelings of unease and uncertainty about the future.

While at Albert Einstein Medical Center in Philadelphia, Pennsylvania, Spatz Caplan received the best care offered at that time. When she was diagnosed, she set a goal to see her youngest start preschool. She set more personal goals throughout the course of her treatment, and they grew as she neared the end of her regimen. Still, those feelings of uncertainty were never far from her mind. At the time, patient support programs were limited, so she was inspired to do something constructive to help others. "With a cancer diagnosis, there's always uncertainty and fear," she says. "My antidote to that was to do something constructive to help people with cancer."

Pursuing a new career

As Spatz Caplan recovered from surgery and subsequent chemotherapy, she approached her oncologist with an idea. "With my academic training in speech pathology [and] psychology, and a teacher's certification, I thought if I paired my professional credentials with my experiences as a patient and caregiver, I might be able to contribute something meaningful."

The cancer center agreed, and ultimately created a new position for her: psychosocial program coordinator. In this pioneering role, Spatz Caplan would focus on helping address the needs of the whole patient – not just the patient's cancer.

After 7 years at Einstein Medical Center, Spatz Caplan took on a new challenge when she decided to move from a medical institution to a nonprofit. During this period, big things were happening in cancer research; pathways responsible for tumor growth were being identified and researchers were hard at work developing treatments that targeted those pathways.

The changing landscape of both treatment and patient care continued to motivate Spatz Caplan, and she joined Living Beyond Breast Cancer (LBBC) as an education and outreach coordinator. Over time, she became the director of programs and partnerships, using her experiences as a patient and working with the organization to infuse the patient voice into their work.

Making a move to Novartis

Spatz Caplan spent nearly 14 years with LBBC, and again felt compelled to do more. At this point, more targeted treatments were being studied and developed, patients were becoming more informed and involved in their own treatment decisions, and patients were also beginning to expect more from the companies that provided their treatments.

She says she was drawn to Novartis because of its legacy in oncology. "The extent of cancer in my own immediate family – let alone my extended family – makes this very personal," she says. "This is what gets me out the door every day. I'm very proud to work for Novartis because we have a strong focus in oncology, and most especially in breast cancer. That's what drew me here."

As Director, US Patient Advocacy, Spatz Caplan is still fueled by her experiences as a patient and the insights she receives from patient advocacy groups. One project Spatz Caplan is proud of is the STEP (Solutions to Empower Patients) Program™. She wanted to create a program that engages external advocacy organizations in an effort to address gaps in care and unmet patient needs. The pilot launched to help find solutions for people living with metastatic breast cancer as they navigate their treatment path. This year, 3 advocacy groups were funded that initiated innovative programs that help patients and caregivers interpret media coverage on research, provide an online patient navigation portal so patients have easy access to information, and create a financial resource directory for patients. The program has been valued by the community, and this year will focus on another patient community with major gaps in care, sickle cell disease.

In the 5 years since Spatz Caplan joined Novartis, the cancer landscape has continued to evolve as scientists, researchers, patient advocates, and oncologists work together to advance research. "The only way we are going to make it better for other families is to keep studying and researching cancer, and identifying new targets for which new treatments can be developed," Spatz Caplan says. "I'm working for a company that is a change agent and is looking to invest in making lives better for people impacted by cancer – and that makes me feel like there could be a brighter future for people over time."

When Spatz Caplan looks back on how her breast cancer diagnosis changed the course of her life in 1991, she is filled with gratitude. "I'm just grateful to be alive and well, and to witness life's milestones. Twenty-seven years ago, those milestones were so far away."

The Conversation

Novartis: Breaking Through Barriers

Finding a virus that crosses the blood-brain barrier could change how some neurological diseases are treated.

Originally Published by Novartis.

By Goran Mijuk

Brian Kaspar speaks with a soft but determined voice, choosing every word carefully.

The 45-year-old researcher, who serves as chief scientific officer of US-based gene therapy company AveXis, is extremely focused. This has helped him in his pursuit to develop gene therapy for patients suffering from deadly motor neuron diseases.

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Novartis: The Importance of Caregivers

Melanoma survivor T.J. Sharpe discusses his personal experience with cancer and the important role caregivers play in a patient's road to recovery.

Originally Published by Novartis.

By T.J. Sharpe

Behind every cancer patient, there is likely a caregiver whose critical role is often overlooked. By helping patients understand and process their disease, caregivers can positively impact patients' treatment decisions as well as their ability to adjust to the new reality of being under an oncologist's care.

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Novartis Announces Clinical Collaboration with Pfizer to Advance the Treatment of NASH

There are currently no approved treatments for NASH, a progressive form of non-alcoholic fatty liver disease, which affects up to 6.5% of the population worldwide.

Originally Published by Novartis.

Novartis announced that it has entered into a clinical development agreement with Pfizer which will include a study combining tropifexor and one or more Pfizer compounds for the treatment of NASH, including an Acetyl CoA-Carboxylase (ACC) Inhibitor (PF-05221304, a Diacylglycerol O-Acyltransferase 2 (DGAT2) Inhibitor (PF-06865571, and a Ketohexokinase (KHK) Inhibitor (PF-06835919). The financial details of this transaction are not disclosed.

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Novartis: Sandoz Healthcare Access Challenge Returns, Seeking Digital Solutions to Local Healthcare Access Challenges

Despite major advances in modern medicine, universal access to healthcare remains the largest unmet medical need.

Originally Published by Novartis.

Sandoz, the Novartis generics and biosimilars division, announces the launch of the second Sandoz Healthcare Access Challenge (HACk).

The Sandoz HACk is a global competition that invites entrepreneurs and innovators in the field of digital technology to submit inspirational ideas with the potential to complement - or even positively disrupt - established approaches to driving access to healthcare. Sandoz HACk opens for entries October 4, closing on November 30, 2018.

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Novartis: Alcon Announces Voluntary Global Market Withdrawal of CyPass Micro-Stent for Surgical Glaucoma

Decision based on five-year data from COMPASS-XT long-term safety study; Alcon advises ophthalmic surgeons to cease further implantation.

Originally Published by Novartis.

Reflecting its uncompromising commitment to patient safety, Alcon announced an immediate, voluntary market withdrawal of the CyPass Micro-Stent from the global market. In addition, Alcon advises surgeons to immediately cease further implantation with the CyPass Micro-Stent and to return any unused devices to Alcon. This decision and corresponding recommendation is based on an analysis of five-year post-surgery data from the COMPASS-XT long-term safety study.

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Novartis Reports Favorable Results for Alpha Specific PI3K Inhibitor BYL719

Full results will be submitted to an upcoming medical congress and Novartis will initiate discussions with regulatory authorities worldwide.

Originally Published by Novartis.

Novartis announced the global Phase III SOLAR-1 trial evaluating the investigational alpha-specific PI3K inhibitor BYL719 (alpelisib) has met the primary endpoint showing an improvement in progression-free survival (PFS). SOLAR-1 is evaluating BYL719 in combination with fulvestrant compared to fulvestrant alone in postmenopausal women and men with hormone-receptor positive, human epidermal growth factor receptor-2 negative (HR+/HER2-) PIK3CA-mutant advanced or metastatic breast cancer that progressed on or following aromatase inhibitor treatment with or without a CDK4/6 inhibitor[1].

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Novartis appoints Dr. Klaus Moosmayer as Chief Ethics Risk and Compliance Officer

Dr. Moosmayer is a recognized global leader in Ethics and Compliance. Since 2013, he has been Chair of the Anti-Corruption Taskforce of the Business and Industry Advisory Committee at the Organization for Economic Co-operation and Development (OECD).

Originally Published by Novartis.

Novartis announced the appointment of Dr Klaus Moosmayer as Chief Ethics, Risk and Compliance Officer. He will report to Vas Narasimhan, M.D., CEO of Novartis and become a member of the Executive Committee of Novartis (ECN). Dr. Moosmayer will join Novartis on December 1, 2018 and will be based in Basel, Switzerland. He succeeds Shannon Thyme Klinger who was recently appointed Group General Counsel.

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Novartis Marks a New Era for Migraine Patients with the EU Approval of Aimovig, a First-of-its-Kind Treatment Specifically Designed for Migraine Prevention

Migraine is the third leading cause of disability in people under 50, leading to severe disruption to the personal and professional lives of millions of sufferers.

Originally Published by Novartis.

Novartis announced that the European Commission (EC) approved Aimovig® (erenumab) for the prevention of migraine in adults experiencing four or more migraine days per month. Aimovig is the first and only treatment specifically designed for migraine prevention to be approved in the European Union, Switzerland, the US and Australia. It works by blocking a receptor called the calcitonin gene-related peptide receptor (CGRP-R) which plays a critical role in mediating the incapacitating pain of migraine. In the extensive clinical program of 2,600 patients, those on Aimovig experienced significant reductions in their number of migraine days per month, with a safety and tolerability profile similar to placebo[1]-[3]. Aimovig can be self-administered or administered by another trained person every four weeks with the SureClick® autoinjector pen, an established device commonly used for a range of different conditions.

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