Initiatives underway
Patient groups have long been active in supporting patients with cancer – an often life-threatening condition. In developed countries, patient organizations tend to focus on reimbursement or compliance issues. However, in regions where healthcare delivery systems are less developed, patient groups generally focus on basic levels of care, patient education, diagnosis and treatment - issues relevant across cancer and sometimes other therapeutic areas.
Treatments for specific cancers are continually evolving and patients, their families and carers are constantly seeking new information. To help patient groups meet this need, Novartis provides updates on new developments – even from the earliest stages – to patient groups in Latin America, Asia, the US and Europe.
Novartis supports patient groups in other ways, varying from providing information on health policy to groups in the more mature regions of Europe and the US, to simply helping newer groups with the tools needed to attract members, raise funds, develop projects and learn where to get information.
To help all these groups, Novartis Oncology has hosted annual global patient group summits. These meetings bring leaders of patient groups together to address key issues, while also getting medical updates on products in a particular cancer or group of cancers, as well as exchanging basic information on the fundamentals of patient organizations.
In 2007, for the second time, Novartis Oncology sponsored a regional summit for Latin America, this time in Chile. Forming a Latin Alliance, more than 70 individuals came together for a three-day workshop. They represented 8 disease states and 45 patient advocacy organizations from 14 Latin American countries. The Latin Alliance dynamic is based on registry projects, capacity-building activities and networking.
As awareness of specific diseases grows, new patient groups are being created. In March 2006, Novartis Oncology helped organize a meeting to discuss the establishment of a European organization to represent patients with rare anemias. During the course of that year, Novartis Oncology worked across many fronts in the US, providing significant funding for numerous education and awareness programs.
For the past four years, Novartis Oncology has been an official sponsor for the Avon Foundation's Walk for Breast Cancer series in the US to increase awareness of the risk of recurrence of breast cancer. More than 75 000 people have participated, raising more than USD 175 million, distributed by Avon in grants to leading cancer centers, research institutions and community-based organizations where local walks took place. [OK?] Novartis also was a sponsor of the 2006 Avon Walk Around the World.
In December 2007, 72 patient advocacy group leaders from 6 countries participated in a breast cancer educational luncheon sponsored by US Novartis Oncology. A renowned physician presented relevant data for current treatments in breast cancer as well as clinical trial results and implications for patient care. In many ways, patients are their own best advocates. Harnessing this power through the development of patient advocacy networks will lead to more patients asserting their rights to information and healthcare.
Novartis believes that well organized patient groups might have a very positive influence not only in chronic oncology or hematology disease management, but also create a channel to communicate patient needs to different stakeholders. Access to the right treatment is basic. However, other variables such as education, compliance, monitoring and better understanding of the healthcare system complexities will facilitate healthcare policy adjustments. Novartis has been developing clear and respectful relationships with patient organizations supporting them in different ways to achieve their goals.
Learn more on the Avon Foundation's Walk for Breast Cancer series
