A Peek at WMozzies

This is the third and final article in a series of articles examining the work undertaken by patient organisations to help those affected by Waldenström’s macroglobulinaemia (WM).

 

WM is a rare, slow growing blood cancer. Approximately three in one million people are diagnosed with WM every year in the USA. In Europe, approximately five in one million people are diagnosed with WM each year. In Australia, it is estimated that 800 people have WM with approximately 60 new cases diagnosed each year. WM is classified as an orphan disease, i.e., one so rare that funds for research and enough patients for clinical trials are scarce. Treatment options for WM are often based on research undertaken in other disorders.

The Waldenström’s Macroglobulinemia Community (WMozzies) was formed in 2003 in conjunction with the International Waldenström’s Macroglobulinemia Foundation (IWMF) and the Leukaemia Foundation of Australia (LFA). The formation of WMozzies, a support group for patients with WM living in Australia, was spearheaded by Gareth Evans, a patient with WM. “Up until 2003, Gareth had been an Australian member of the IWMF. He discovered other Australians with WM and they started emailing each other but this became unwieldy so they decided to form WMozzies as well as a Talk List hosted by Yahoo,” said Andrew Warden. Andrew is the leader of the WMozzies Advisory Group (WAG).

Today, the Talk List is a moderated online discussion forum called WMozzies Forum.

Objectives of WMozzies

WMozzies has a number of objectives that include providing practical support, discussion forums, and information for patients and physicians on WM. Among the activities that WMozzies undertakes are:

  • Lobbying for changes to the way in which drugs become available in Australia. Australia has a two-step process – registration (ensures drug is safe and effective) and reimbursement (ensures drug is cost effective to warrant tax payer funding).
  • Lobbying drug companies to actually submit applications to the Therapeutic Goods Administration (TGA) and Pharmaceutical Benefits Advisory Committee (PBAC) and make therapies accessible to Australians;
  • Encouraging the updating of treatment guidelines to help not only haematologists but also patients when they need assistance with treatment decisions. A group of Australian clinicians has agreed to do this for WM;
  • Cultivating a group of haematologists to become more interested in WM, to champion the WM cause and, especially, to stimulate interest in WM research, clinical trials and access to therapies;
  • Working with the LFA in the provision of support services to WMozzies;
  • Facilitating the dissemination of the wealth of information provided by the IWMF, their educational services and their major research efforts.

In Australia, drug registration is the responsibility of the TGA and applications for reimbursement are assessed by PBAC. If a diagnostic test determines access to a therapy, the test has to be assessed and approved by the Medical Services Advisory Committee. Therapies approved for reimbursement are listed on the Pharmaceutical Benefits Scheme (PBS) and approved tests, devices and procedures receive an item number and are listed on the Medical Benefits Schedule. The Health Minister approves PBAC recommendations except for any therapy costing more than AUD$20 million each year in the first four years of reimbursement. These recommendations require Cabinet approval. If drugs are not registered in Australia, there is a special access scheme operated by the TGA which enables doctors to purchase drugs for their patient if the patient can pay the costs. Most Australians cannot afford this option so TGA registration and PBS listing are very important to ensure access to therapies.

WMozzies has limited resources so the group relies on both the IWMF and the LFA for support.

“We have no staff or funds, we’re only an advisory group of four volunteers,” said Andrew.

The LFA offers a comprehensive range of support services to WMozzies, the families of patients with WM as well as friends. These services include disease information and education sessions, emotional, practical and financial support, support groups, accommodation and transport.

Included in the services provided by the LFA are “home away from home” no-cost accommodation for those living in regional, rural or remote areas.

The LFA also provides a transport service to and from treatment centres in many areas.

“For instance, for those living 100 km away from the hospital, the LFA will arrange for a car to bring them in for their treatment and then, at the end of the day, take them home,” said Andrew. As with the accommodation, there is no charge for this service.

Role of WAG

WAG had its first meeting in Sydney in October 2013 at LFA’s offices. The first part of the meeting was with Anna Williamson, LFA’s Head of Research and Advocacy, and other support leaders.

“What we wanted to do was establish how we were going to work together and identify the areas LFA would be happy to support WMozzies,” said Andrew.

The second part of the meeting was to identify the concerns and needs of patients with WM and to then establish goals and priorities.

“The true concern we have is getting access to the emerging therapies and getting them funded in Australia,” he said.

Among the concerns raised by patients was who to go to for a second opinion.

“Patients go to their local haematologist who may not know the latest treatments or best practice. While local haematologists are well qualified, they may only see one case of WM every 10 or 20 years,” said Andrew.

Another concern raised was that the treatment guidelines for WM were out of date.

“The government has guidelines that are about a decade old and the material contained in them refers to information from another decade,” he said.

The other issue discussed was the type of meetings to have and how often.

“The group felt that small meetings over a cup of tea and a bite to eat where people get to know each other and share some of the burdens of being a patient were best,” said Andrew.

The types of topics people like to discuss at these sessions include medical and emotional burdens, financial issues and how to cope with fatigue. Subhead

Staying Connected

In addition to the online discussion forum, there are telephone forums that patients with WM can participate in.

“Telephone forums take place about six times a year with between six and 12 people attending,” said Andrew.

Anyone from across Australia can participate in these forums which are organised by the LFA.

There are also support group meetings in Queensland and New South Wales with other states setting up similar meetings.

“Victoria had its first meeting in August this year and Western Australia is expected to have its first meeting later this year,” said Andrew.

Wishing WMozzies all the best in their efforts to reach out to those with WM in Australia.

September 29, 2014

 

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