Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We decided that it is time to shout out about how important patient advocacy in sarcomas is – for patients, caregivers, healthcare professionals or anyone interested in sarcomas.
We are very happy to have received submissions of outstanding projects and initiatives for our SPAEN Advocacy in Action Award 2017.
The best projects have been awarded by a jury of 8 members consisting of patient advocates and experts. Those projects are:
- Friends of Max, India: Together We Share and Learn – Ongoing life-long relationship management of GIST patients & caregivers
- Polish Sarcoma Patients Association, Poland: ONCORUN – Together for health!
- Associazione Paola, Italy: 1. Paper on sarcoma/rare cancer health policies, 2. Sarcoma meeting for healthcare professionals and policy makers, 3. Funding Ewing sarcoma research (travel scholarship 2017/2018), 4. Lobbying in order to relax the rules for the “compassionate use” in rare cancers
Friends of Max, India:
Together We Share and Learn – Ongoing life-long relationship management of GIST patients & caregivers
The Friends of Max Project offers advice on care, information and emotional support in various areas – patient-related printed information, physician-patient/caregiver meetings in towns and cities, regular telephonic contacts for reminder/compliance, patient education, compliance, support group meetings, awareness in the community, leadership training. Oncologists and Onco-Surgeons advise patients on clinical, drug & surgery-related queries and solutions during the Parent Group Meetings.
Nearly 600 patients of this rare sarcoma GIST, based in all parts of India, from various backgrounds and professions, are part of the 14-year relationship with Friends of Max. This helps getting patients connected to sarcoma centres of excellence for the best GIST treatment.
All its activities (patient group meetings, printed literature) are funded by donations raised at various informal tea-party charity events which are also advocacy platforms ( called Chai for Cancer “Addas”).
Why is this project so important?
The Project offers emotional support and solace especially as the cancer care-sector is as yet nascent in India and this is a rare cancer with no history of care protocol. The patients hail from poor, rural-based sections of society where fallacies and misconceptions about GIST are rampant.
The disease also carries severe social stigma and patients/relatives feel isolated often having to cope with the stigma for life. Friends of Max offers a constant paternal, familial atmosphere of reassurance through dissemination of facts endorsed by physicians.
Apart from online/printed newsletters and brochures, social media is used to spread messages and information to an even wider audience. Patient Group Meetings are a rich source of information and data-sharing often communicated through formats like art therapy, drama therapy, music therapy, quiz therapy and tell-your-story therapy.
Polish Sarcoma Patients Association, Poland:
ONKOBIEG – Razem po zdrowie! / ONCORUN – Together for health!
On the first sunday in September, the Oncorun – Together for Health is held every year in Warsaw, Poland. It is dedicated to cancer prevention and all people struggling with cancer and their families.
In 2017, 2,000 people took active participation in the Oncorun, among them SARCOMA and another type of oncological diseases sufferers, their family members and caregivers. The project is supported by a number of Poland’s leading oncologists, politicians and an Paweł Nastula, an Olympic game champion and Ambassador of Oncorun. Thanks to the brochures and booklets presented by organizers of Oncorun, all participants had possibilities to obtain information not only about SARCOMAS but also knowledge how everyday physical activity influences people’s health.
Why is this project so important?
The event’s objective was to raise money and awareness for cancer patients and their caregivers. The results are impressive!
Response to the event on the Internet:
- 14,400 interactions on the Internet, including Social Media,
- 500 comments, including 97.8% positive, 1.2% neutral and 1% negative,
- 107 online interactions outside Social Media
- 16 mentions on the Radio /local and nationwide/,
- 4 information on TV /nationwide/.
Nearly 2000 participants covered the lap around the Center of Oncology in Warsaw 750 times (16.447 km) – which resulted in the amount of about 70.000 PLN (nearly 17.000 Euro), which will be allocated to support the neediest patients, charges of Oncorun and also for preventive activities.
Associazione Paola, Italy:
Paper on sarcoma/rare cancer health policies – Sarcoma meeting for healthcare professionals and policy makers – Funding Ewing sarcoma research – Lobbying to relax rules for “compassionate use”
This submission consists of four different projects:
1. Paper on sarcoma/ rare cancer health policies
2. Sarcoma meeting for healthcare professionals and policy makers
3. Funding Ewing sarcoma research (travel scholarship 2017/2018)
4. Lobbying in order to relax the rules for the “compassionate use” in rare
The first two projects are aimed to spread information and raise awareness on sarcoma patient needs among healthcare professionals and policy decisionmakers
as new approaches/new “paradigms”/ new solutions are required in order to address these needs.
The third project aims to support research by funding the Euro Ewing Consortium for travel scholarships to pursue studies relative to Ewing sarcoma either as a laboratory or clinical attachment.
For the fourth project, Associazione Paola, together with rare cancer clinicians and other PAGs, has been involved in a “lobbying” action to change the national
legislation regarding the “compassionate use” of drugs in rare cancer patients. The aim was to introduce greater flexibility in the criteria established for patient access taking into consideration the higher level of uncertainty in rare cancers and the difficulty of building “evidence” through conventional methodologies in clinical trials.
In September 2017, the new act on “compassionate use” for all drugs including those for rare cancers was published. The proposals for improving rare cancer patients fast access were totally accepted and included in the new legislation.
Why are these projects so important?
1. To spread information, to raise awareness on sarcoma patient needs – such as the timely access to new drugs- and to amplify patient perspective across the
society at large.
2. Reducing inequalities in the access to available treatments for sarcoma patients is a responsibility of all the stakeholders involved. Bringing together politicians, health professionals and patients is fundamental for a better understanding of the different perspectives and for looking for the adoption of the most appropriate and sustainable solutions.
3. Education of researchers and health professionals is essential for delivering high quality cure. Education inside a devoted “network”-such as Ewing networks particularly valuable because it can amplify the results by a sort of “mutual benefit” both for researchers and for the network itself.
4. To allow rapid access to drug compassionate use for rare cancer patients, relaxing the previously in force rules.
The award ceremony during the 8th SPAEN Annual Conference on February 3/4, 2018 in Milan, Italy, was moderated by Estelle Lecointe-Artzner, co-chair of SPAEN. “The jury had a really hard job to decide, as all submissions were really strong projects”, she stated. Kai Pilgermann, Director of Finance at SPAEN and jury member himself underscored this and summarized: “We are amazed and very proud to have such strong member groups and feel privileged to support some of them with the prize money of the SPAEN Advocacy in Action Award.”
Some very special thanks also go to the jury for taking the time to read and evaluate the project submissions:
Dr. Alessandro Gronchi, Dr. Rick Haas, Dr. Robin Jones and Professor Bernd Kasper representing the experts’ perspective and
Lindsey Bennister, Kamil Dolecki, Nikhil Guhagarkar and Kai Pilgermann on behalf of the patient advocates.
Background on the SPAEN Advocacy in Action Award
We were looking for projects, initiatives, campaigns fulfilling the following eligibility criteria:
|Participants:||All SPAEN member groups|
|Type of projects:||
Should be sarcoma specific (Soft Tissue, Bone, GIST, Desmoid, Chordoma)