A Peek at Group Nexus Japan

Until 2001, patients with lymphoma did not have their own patient support group in Japan. That changed when the mother of one of the founders of Group Nexus Japan was receiving treatment for lymphoma

as she thought she should start a group that focused on lymphomas only rather than blood disorders in general in order to support those patients.

Group Nexus Japan is led by Shinsuke Amano, the chief executive officer (CEO) who is also a non-Hodgkin lymphoma survivor, and a 10-member board of directors. Board members are primarily survivors of lymphoma or family members of survivors.

“Shinsuke is the only person in the organisation who receives a salary,” said Tamaki who works as an English teacher four days a week and uses her free time to do work for Group Nexus Japan. The donations the organisation receives go directly back to the patient.

Tamaki has two roles within Group Nexus Japan: she is the deputy executive director which entails assisting the CEO in the management and operation of the organisation, and she heads the Osaka branch with the help of approximately 10 volunteers. Osaka, the largest of the 10 branches within Group Nexus Japan, is 500 km southwest of Tokyo.

Getting Involved

Tamaki, a Hodgkin lymphoma (HL) survivor, got involved with Group Nexus Japan in 2004.

“I saw a notice for a medical seminar being held in Osaka that was hosted by Group Nexus. That was the first time I realised there was a patient group for patients with lymphoma. I thought I should go and see how the other patients were doing especially those with HL as it’s a very rare form of lymphoma in Japan,” she said.

After attending the meeting, which Tamaki thought was very well organised, she decided to join the group.

Objectives of Group Nexus Japan

The organisation’s objectives are to:

• Contribute to the improvement of health, medical care and the welfare of the patient through the provision of correct information on malignant lymphomas and raise awareness among patients, families and the general public; • Undertake research in the hope of improving the medical care for lymphomas as well as empowering patients.

The organisation achieves its objectives through medical seminars, local meetings held at each branch and the publication of newsletters and magazines.

Importance of Medical Seminars

Approximately eight medical seminars are held throughout Japan in a given year. The seminars last half a day and take more than six months to plan. At the moment, Tamaki is busy planning for the seminar she hopes to hold in Osaka in May or June 2015. She expects approximately 150 people (patients and families) to attend the medical seminar in Osaka each year.

The challenge in organising the seminars is gauging the level of knowledge among participants.

“Some attendees say the lectures are too difficult and others say they are too easy,” she said.

As a result, Tamaki arranges for two doctors to speak: one to talk to those who are newly diagnosed and may not know much about lymphoma, and the other to give a more advanced lecture. She also has a nurse who has either specialised in oncology or radiology speak about how to manage daily life activities or the side effects associated with treatment.

Because the seminars are only half a day, Tamaki has devised a way for handling all the questions attendees may have.

“We make it a rule to have participants write down their questions during the break which the doctors then review and answer,” she said.

Local Branch Meetings

All branches organise local gatherings called tea parties. At the Osaka branch, Tamaki arranges for tea parties to be held every three months: January, April, July and October with approximately 30 people coming to each one. The tea parties last approximately two hours.

“We get together to talk, share information and learn from each other, and it’s good to see the faces of the other patients,” she said.

Keeping Members Connected

In addition to the various meetings that occur throughout the year, Group Nexus Japan also publishes a magazine four times a year.

“The magazine is mailed to approximately 2,000 people. Because it’s a lot of work to put together, the Tokyo and Osaka offices take turns compiling it,” said Tamaki.

The magazine includes the lectures given at the medical seminars, information on new treatments, interviews with survivors, news from the branches and feedback from readers.

The members can also read the magazines on the Internet.

Stigma of Cancer

One of the biggest challenges in helping patients with cancer in Japan is that it is not something that is generally acknowledged or discussed.

“Unfortunately, in Japan to show one has cancer is a big obstacle for a promotion at work. It’s terrible. Consequently, many people won’t say they have cancer and the general public believes that any cancer is a fatal disease,” said Tamaki.

Because of this perception about cancer, Tamaki wanted to send photos of patients to the Lymphoma Coalition to be uploaded to the website that showed patients leading normal lives. However, she was only able to send one photo because she didn’t have time to seek permission from those in the other photos.

“Some people are not happy about sharing their face on the internet,” she said.

In another situation, Tamaki was asked by a local television station if there was a patient with lymphoma who would be willing to be interviewed. The filming of the interview went well but at the end, the wife of the patient asked for the piece not to be aired as they had an unmarried daughter and didn’t want others to know that a family member had cancer.

“That’s why I’m really surprised to see the web pages of other patients with lymphoma sharing lots of stories and all with beautiful smiling faces but it’s important that we change our way of thinking about cancer,” she said. Tamaki noted that this is likely an issue in other East Asian countries.

Thanks to the efforts of patients with cancer, Tamaki said that the Japanese government has decided to promote a new system that recognises the rights of patients with cancer to keep working.

“Nothing concrete has been decided yet as to how this will be done but there is a growing awareness that something needs to be done,”

Satisfaction with Healthcare

In spite of the social stigma associated with cancer, Tamaki is fairly satisfied with the way healthcare is provided in Japan.

“I’m about 70% satisfied mainly due to the good health insurance system and the improvement in the quality of medical care provided by both medical staff and institutions,” she said.

This is reflected in the results from the 2014 Global Patient Survey where significantly more respondents (64% in 2014 compared with 22% in 2012) had informed their healthcare providers about the effects that lymphoma was having on their quality of life and a large number (93%) had indicated that their doctors had been able to help them. What is not as encouraging is that only 47% of respondents had been approached to participate in a clinical trial.

Tamaki is, however, less than satisfied with the long approval times for new drugs, the insufficient knowledge on the part of medical staff about treatment options and the lack of support for patients who are working.

“I think the approval of new medicines is improving. It used to take three to four years but now it takes one year. However, once the government has approved a new therapy, it is usually approved for reimbursement within two to three months,” she said.

Tamaki thinks that one of the reasons why approvals take a long time is that the government wants all the relevant documents translated into Japanese which is a very time-consuming task.

“The Japanese are not good at English but doctors are starting to realise that they have to speak it, especially those working with Korean and Chinese doctors on the lymphomas that are unique to East Asia such as nasal natural killer T-cell lymphoma,” she said.

Thank you Group Nexus Japan for all your efforts to help raise awareness about lymphomas and for doing such an excellent job supporting the patients in Japan.

February 23, 2015

 

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