Canadian results from first global survey of neuroendocrine tumour (NET) patients reveal profound impact of this rare cancer on quality of life

• Results show 90% of patients made lifestyle modifications as a result of their NET, including changes to diet, work, physical activities and social life¹
• Among those currently working nearly half had to take days off as a result of their NET, and among those not working, 82% had to stop due to their NET¹
• Survey is a collaboration between Novartis AG and the International Neuroendocrine Cancer Alliance

DORVAL, QC, Nov. 10, 2014 /CNW/ - Results from the first global survey of patients with neuroendocrine tumours (NETs), a rare type of cancer¹ were released today in conjunction with the Worldwide NET Cancer Awareness Day (WNCAD). Nearly 2,000 patients from 12 countries completed the survey, which was a collaborative effort between the International Neuroendocrine Cancer Alliance (INCA) and Novartis AG. In Canada, the Carcinoid NeuroEndocrine Tumour Society Canada (CNETS), which is a member organization of INCA, shared the survey with their members. The results provide compelling data documenting the impact of NETs on people living with this disease¹.

In Canada, close to all respondents (95%) reported their quality of life was negatively affected by their disease and up to 90% made lifestyle changes as a result of their NET¹. Specific areas impacted by NETs include work, emotional health and lifestyle¹.

"We are very grateful for the opportunity to have our members take part in the first global survey of NET patients. It confirms the experience our members share with us – that this relatively uncommon and often devastating cancer is taking a huge toll on a patient's quality of life and that of their loved ones," said Jackie Herman, CNETS Canada President. "We hope that by sharing these results, greater attention and education will be brought to the area of NET cancer in Canada and around the world."

NETs is the umbrella term for a group of unusual cancers which develops from cells in the diffuse endocrine system². NETs can affect people of any age, can be slow-growing or very aggressive and are difficult to diagnose². After the onset of symptoms, which are often nonspecific and vague, a diagnosis can take an average of three to seven years ². Since NETs are uncommon, awareness about the disease is very limited. NETs arise in different tissues and organs throughout the body that contain neuroendocrine cells; most are found in the gastrointestinal (GI) tract, lungs and pancreas, and they are categorized as symptomatic (functional) or asymptomatic (non-functional)^3,4,5,6. In Canada, it is estimated that there are between 12,000 and 15,000 people with NETs.⁷

"As someone who treats patients with NET cancer, I can certainly attest to the potentially devastating repercussions this can have on a patient's physical and emotional well-being," says Dr. Shereen Ezzat, Endocrine Oncologist at the Princess Margaret Cancer Centre in Toronto. "Having access to such large-scale data will certainly help validate what my patients are experiencing and hopefully contribute to more pointed support for these patients."

The Canadian survey results revealed the impact on patients' personal and work lives. Among those who were currently working (39%), nearly half (49%) had to take days off work due to their NET¹. For respondents who were not currently employed or were unemployed because of medical disability (30%), the majority had stopped working as a result of their NET (82%)¹.

The survey also measured the toll NETs can have on patients' emotional health and lifestyle. Almost seven-in-ten respondents (68%) noted that their emotional health had been affected, and more than half worry about the uncertainty of their future (60%). Furthermore, 62% of patients reported having to deal with stress and anxiety levels¹ and nearly half of respondents (42%) feel confused about the management of their disease¹. Patients also reported that their NET affects their overall energy levels (71%), diet (62%), ability to participate in leisure activities (51%) and social life (49%), and limited their physical activities (54%), which made them unable to participate in activities they used to enjoy¹.

"The NET patient survey has provided tremendous information about the patient experience," said Pierrette Breton, former Canadian Board Member for INCA. "The survey results help the patient better understand his or her own journey with NETs and, we hope, can help the cancer community better understand and respond to NET patients in Canada."

The Novartis AG collaboration with INCA is part of the company's longstanding commitment to improving knowledge and management of NETs, engaging with patient groups worldwide to better understand the patient experience and helping the patient community to raise its voice. Results from the survey related to quality of life were presented at the North American NeuroEndocrine Tumour Society (NANETS) symposium in Nashville, TN, USA, October 10-11, 2014.

About the survey
The goal of the Global NET Patient Survey was to increase understanding of the experiences, needs and challenges of NET patients, and provide insights and learnings between countries and regions to advance NET care on a global level¹.

The Global NET Patient Survey was fielded between February 2014 and May 31, 2014, and included 1,928 patients from 12 countries¹. The survey was made available in eight languages, and participating INCA member organizations invited NET patients to participate in the 25-minute online anonymous survey via flyers, website postings, emails and social media channels¹. Paper surveys were developed in several languages and distributed at patient group meetings and through healthcare professionals to reach patients without access to the Internet. The data are being analyzed at the global, regional and country levels¹.

The Canadian results of the survey are based on responses from 164 NET patients. Respondents were contacted by the Canadian INCA member organization, CNETS Canada through an anonymous survey via flyers, website postings, e-mails and social media channels. The data were analyzed in aggregate for Canada as a whole and

gathered information on the NET patient experience, including diagnosis, disease impact and management, quality of life, and knowledge and awareness levels. The quality-of-life results are the first data to be released and additional findings will follow¹.

The survey was developed through a collaborative effort between INCA and Novartis and was fielded by Hall & Partners USA, LLC, a research organization based in New York with offices around the world. Survey participation was voluntary and not subject to any compensation¹.

Disclaimer
This press release contains expressed or implied forward-looking statements, including statements that can be identified by terminology such as "can," "hope," "commitment," "goal," "will," or similar expressions. Such forward-looking statements reflect the current views of the Group regarding future events, and involve known and unknown risks, uncertainties and other factors that may cause actual results to be materially different from any future results expressed or implied by such statements. These expectations could be affected by, among other things, risks and factors referred to in the Risk Factors section of Novartis AG's current Form 20-F on file with the US Securities and Exchange Commission. Novartis is providing the information in this press release as of this date and does not undertake any obligation to update it in the future.

About the Carcinoid NeuroEndocrine Tumour Society Canada (CNETS Canada)
The Carcinoid-NeuroEndocrine Tumour Society Canada (CNETS Canada) was formed in 2007 to assist the Canadian community, primarily patients, with this type of disease. CNETS provides workshops and seminars on issues dealing with conditions associated with carcinoid and related neuroendocrine tumour diseases. They establish support groups to provide support services for those affected by carcinoid and related neuroendocrine tumour diseases and work to increase awareness of and educate the public and health care professionals on carcinoid and related neuroendocrine tumours, their diagnosis, treatment and management.

About the International Neuroendocrine Cancer Alliance (INCA)
The International Neuroendocrine Cancer Alliance (INCA) is a network of charitable organizations and patient groups from 14 countries that aims to be the global voice in support of people living with neuroendocrine tumours (NETs). The organization is dedicated to being the global advocate for NET patients and works toward a world where all NET patients get a timely diagnosis, the best care and ultimately a cure. For more information on INCA visit http://netcancerday.org. INCA is also on Facebook at NET Cancer Day (https://www.facebook.com/netcancerday), and on Twitter, @netcancerday (https://twitter.com/netcancerday).

About Novartis Pharmaceuticals Canada Inc.
Novartis Pharmaceuticals Canada Inc., a leader in the healthcare field, is committed to the discovery, development and marketing of innovative products to improve the well-being of all Canadians. In 2013, the company invested close to $100 million in research and development in Canada. Novartis Pharmaceuticals Canada Inc. employs more than 600 people in Canada. For further information, please consult www.novartis.ca.

About Novartis
Novartis provides innovative healthcare solutions that address the evolving needs of patients and societies. Headquartered in Basel, Switzerland, Novartis offers a diversified portfolio to best meet these needs: innovative medicines, eye care, cost-saving generic pharmaceuticals, preventive vaccines, over-the-counter and animal health products. Novartis is the only global company with leading positions in these areas. In 2013, the Group achieved net sales of USD 57.9 billion, while R&D throughout the Group amounted to approximately USD 9.9 billion (USD 9.6 billion excluding impairment and amortization charges). Novartis Group companies employ approximately 133,000 full-time-equivalent associates and sell products in more than 150 countries around the world. For more information, please visit http://www.novartis.com.

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References

¹ Novartis and INCA Global NET Patient Survey Report: Canada NET Patient Survey Results. Data on File.
² What is NET cancer? Available at: http://netcancerday.org/learn-more/what-is-net-cancer, Accessed October 2014.
³ National Cancer Institute. Dictionary of Cancer Terms: neuroendocrine tumour. Available at: http://www.cancer.gov/dictionary. Accessed October 2014.
⁴ Yao, et al.One Hundred Years After "Carcinoid:" Epidemiology of and Prognostic Factors for Neuroendocrine Tumours in 35,825 Cases in the United States. J Clin Onc. 2008; 26:3063-72.
⁵ Akerstrom, et al. Timing and extent of surgery in symptomatic and asymptomatic neuroendocrine tumours of the pancreas in MEN 1. Langenbecks Arch Surg. 2002; 386(8):558-69.
⁶ Modlin, et al. Priorities for Improving the Management of Gasteroenteropancreatic Neuroendocrine Tumours. J Natl Cancer Inst. 2008; 100:1282-1289.
⁷ CNETS Canada – Awareness and Support. Available at: http://survivornet.ca/en/partners/carcinoid_neuroendocrine_tumour_society_canada_cnets_canada. Accessed October 2014.

SOURCE: Novartis Pharmaceuticals Canada Inc.

Novartis Media Relations, Andrea Gilpin, Novartis Pharmaceuticals Canada Inc., + 1 514-633-7873, [email protected]