Suomen Syöpäpotilaat – Cancer patienterna i Finland (Association of Cancer Patients in Finland)
The lack of an association that focused on patients with cancer led to the formation of the Association of Cancer Patients in Finland in 1971.
“At that time, there was only a cancer association that was run by doctors and other experts. Our organisation was born out of the need to have an organisation that put patients at the centre,” said Minna Anttonen, the association’s Executive Director. Minna has been with the association for just over a year. She is responsible for the association’s operational needs and is also the secretary for the board.
Helping Minna is Emmi Toivonen who is the non-governmental organisation (NGO) coordinator. Her job includes coordinating the patient networks and their events, as well as taking care of the association’s communication.
“When I applied for this position, I thought it would be a great way to combine my background in social work as well as journalism and communications. Cancer is something that touches all of us at some point in our lives. Knowing that, I found the association’s work to be deeply meaningful,” said Emmi who joined the association in January 2017.
A third person works with Minna and Emmi. She helps with some of the administrative aspects but her main role is taking care of getting the patient guides updated.
“This is a large undertaking as there are more than 30 booklets and they have to be updated fairly often,” said Minna.
In April a new person will be joining the team to help with the association’s international activities.
“She is a biologist as well as a nurse. I have high hopes that this new hire will be able to concentrate on our international activities. She will be connected to the Lymphoma Coalition, as an example, as well as other European or global organisations that are beneficial for us to work with,” said Minna.
Objective of the Association
“Our main objective is putting patients at the centre of care. They deserve the best treatments available. This is what we are constantly pushing for,” said Emmi.
The association achieves this objective through partnership with relevant NGO networks.
“We partner with two NGO networks: the Cancer Society of Finland and the Patient Organisation Network,” said Minna. The Cancer Society of Finland provides peer and fundraising support; the Patient Organisation Network helps the association with their advocacy efforts.
Among the more than 30 patient guides the association has, there are 18 disease-specific guides including guides for chronic lymphocytic leukaemia (CLL), lymphoma and Waldenström’s macrogloblulinaemia.
“These booklets are very precise and are intended for patients who really want to know about their disease,” she said.
The booklets are updated by volunteers who are mostly doctors or other healthcare professionals.
“Updating a guide can take up to a year as we have to go back to the person who originally wrote it. The authors are very kind and agree but lack of time is an issue for them as it is for everyone else,” said Minna.
Challenges Facing Patients
While the treatment received by patients is generally good, the healthcare system in Finland is undergoing major reforms including budget cuts.
“These budget cuts affect all patients with cancer including those with lymphoma,” said Minna. As a result of the budget cuts the biggest issue facing patients is lack of access to needed medication.
“I don’t have precise information but I know there are medications that while available in Sweden, are not reimbursed in Finland,” she said. However, Minna is hopeful that these medications will soon be reimbursed as there are people who are advocating for it to be included in the Finnish reimbursement programme.
“All this to say that it is kind of new to us as we used to have everything. So, it is very worrying,” she said.
Keeping Patients Connected Through Patient Networks
The association has 17 networks which function mainly through Facebook. Among these networks are networks that focus on CLL, lymphoma and Waldenström’s macroglobulinaemia.
“Patients can discuss their thoughts, share their experiences and exchange information in a closed Facebook group,” said Emmi. Caregivers can also join the networks.
The level of activity among the different Facebook groups depends on the size of the group.
“Some have fewer than 100 members so their discussions are not as active as they are in other groups. Those with more than 300 members tend to have new posts every day,” said Emmi.
In addition to the Facebook groups, patients organise small, in-person meetings.
“Not everyone wants to meet only online and many want to meet other patients,” said Minna.
These small meetings occur in all parts of the country, not only Helsinki.
Meetings Planned for 2017
Two events are planned for the coming year.
“In April, we are having a two-day event to which guest lecturers are coming. One of the speakers will talk about immunotherapies and another will give a lecture on the increased risk of thrombosis in patients with cancer,” said Emmi.
There will also be separate lectures for men and women on sexuality and relationships and the impact that cancer can have.
The association will pay for attendees’ food and accommodation but attendees will have to pay their own travel expenses.
“During this weekend event, there will also be time for patients to talk to other attendees with the same type of cancer and there will be group sessions during which attendees can share their stories,” said Emmi.
The second event will take place in October 2017 and will focus on haematological cancers including lymphoma.
Value of LC
The association recently joined LC.
As a member of LC and LC Europe, Minna hopes to have access to the latest information on new treatments for lymphoma.
Grateful thanks to Minna and her team at the Association of Cancer Patients in Finland for putting patients at the centre of care as well as their efforts in ensuring patients receive the best possible care.