A Peek at Flute of Light (Israel)
Until recently, patients with either lymphoma or most leukaemias living in Israel did not have a patient support group but that’s changing thanks to the efforts of Giora Sharf, the director of Flute of Light, and his team.
“Giora, who is a 15-year chronic myelogenous leukaemia (CML) survivor, started a CML patient organization in Israel 14 years ago, which today has more than 350 members. Over the years, he has received numerous requests to start patient support activities for other blood diseases.
This is why Giora has decided that patients with lymphoma and leukaemia needed a support group,” said Guy Tavori. Guy, a Hodgkin lymphoma (HL) survivor, is one of the people developing Flute of Light. Guy works as a volunteer at the organisation but is a trained social worker.
The organisation has a board of directors with approximately eight members who are survivors of various types of lymphoma or leukaemia. Only one member, the treasurer, is not a lymphoma or leukaemia survivor but he is the son of a survivor.
Importance of Patient Education
“The main goal of our organisation is patient education. So, the first step is to create a website, in Hebrew, that has information on all the different types of lymphoma and leukaemia,” said Guy.
Aside from creating the website, holding medical conferences and setting up patient support group meetings are the two other main goals of the organisation for 2015.
The website will also contain information on clinical trials, the different treatment options and side effects. The anticipated launch date of the website is February 2015.
To help in gathering the content for the website, Guy reviewed material from different member organisations of the Lymphoma Coalition (LC) and decided to translate the work from the Leukaemia Foundation of Australia.
“We’re going to use the material from the Australian website and that way we don’t reinvent the wheel,” said Guy. Other lymphoma patient organisations have also offered to help with providing content.
Flute of Light is getting support from pharmaceutical companies. As well, haematologists have volunteered to support the group by checking the translation to ensure it is correct and conforms to Israeli Ministry of Health regulatory requirements.
Flute of Light plans to hold four to five medical conferences in 2015 with the first one taking place in March. At these conferences, there will be medical lectures given by haematologists, a presentation from a survivor as well as some form of entertainment.
“At the March conference, there will be two lectures given by doctors. I will speak because it’s a lymphoma conference and I’m a lymphoma survivor, and there will be some sort of entertainment,” said Guy.
Patient Support Group Meetings
Setting up meetings where patients can meet others with the same disease is something Flute of Light is hoping to achieve in 2015.
“My hope is that we’ll have an HL support group as well as one for non-Hodgkin lymphoma, and groups for the different types of leukaemia,” said Guy.
The intention is for the groups to meet once a month to share information and support each other.
Value of Joining LC
The Flute of Light became a member of LC in June 2014.
“We decided to join because, as a new organisation, our thinking was that there were bigger organisations we could learn from. I think it’s quite a natural step to be involved in what’s going on in the world, to get information and ideas about the different things we can do,” said Guy.
Attending the 2014 Global Summit was a positive reinforcement of the decision to join LC.
“I learned a lot at the summit by listening to what happens in other countries. It was great to meet members from other countries, really inspiring,” said Guy.
He also noted that the new function on the home page of the LC website – the Global Database Search – is an amazing tool.
Challenges Facing Patients
The main issue confronting patients is getting information about their disease. Guy said that most people don’t read English or, if they do, not medical-level English. Consequently, if a patient does a search on the internet about a side effect, the information could be misunderstood.
“To have access to a good information base or a place that you can count on where you can get information about treatment, in Hebrew, and at a level you understand, is something that’s really important,” said Guy.
Obtaining the appropriate treatment can also be challenging. Once a medicine receives regulatory approval, reimbursement approval has to be sought.
“A committee of 15 to 20 people (doctors, representatives of different companies and public organisations) determines, once a year, which therapies will be reimbursed by the government,” Guy said.
Applications have to be made to the committee who then decides whether or not to accept them.
“Approximately 600 applications are made each year of which less than 100 are accepted for review,” said Guy.
Once an application has been accepted, it remains in the system although it will not necessarily receive reimbursement approval in the same year it is made. As a result, patients may have difficulty obtaining the treatment needed.
“We as a patient organization can really support those patients. It’s our job to make sure all of our patients get the best treatment available,” said Guy.
Support may include connecting the patient to an organization in another country, helping with paying for the drug or lobbying the committee to try and ensure that a needed treatment gets on the list of reimbursed therapies.
Congratulations to Flute of Light for supporting patients with leukaemia and lymphoma. We wish you every success with all the initiatives you have planned for 2015.
January 26, 2015