Myelom-Gruppe Rhein-Main

Last modified: 12 January 2013

Being a patient advocate

Communications Campaign Case Study

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Anybody can be an advocate for myeloma. You don't have to be a doctor or a politician to become an advocate. In fact the most passionate advocates can be those directly affected by the disease, or their family and friends. Advocacy is simple, accessible to everybody who cares and can be very rewarding.

Benefits of being an advocate

There are many areas in which advocacy on behalf of myeloma patients can make a difference at national as well as international levels, for example:

  • It ensures that patient rights are respected and views are considered in every step of the health care delivery process.
  • It can help improve access to the latest information on myeloma.
  • You can influence the development of drugs and how quickly they are licensed, and also research agendas and protocols.
  • It can lead to better public awareness and understanding of myeloma and help mobilise the community.
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Top tips for advocacy

  • Stay informed about all issues related to myeloma (news in the media; information on clinical trials; changes in health care/cancer legislation, etc).
  • Speaking about your own experience in front of health care professionals, medical students, social workers, hospital staff, employers and employees, and community organisations can help them to understand what it like to live with myeloma.
  • Tell your story to the media at every opportunity and make sure your voice is heard. (See also the media relations section on this website.)
  • Every patient is entitled to be treated with respect and have access to the highest quality information, treatment and care. Whenever you feel that patient rights are not honoured or you come across inconsistencies in terms of information, research, treatment and care, raise these issues with Government and the regulators so that something can be done to address these problems.
  • Attend and/or set up a myeloma patient advocacy training programme. (See also the events section on this website.)
  • Understand the drug research and approval process and apply for "consumer seats" on myeloma diagnostics and treatment research panels and editorial boards of cancer journals.
  • Initiate workshops or conferences - ideally in collaboration with other myeloma patient groups - and invite patients, family members, clinicians, health care professionals, politicians and other decision makers to participate.
  • Understand the political decision-making process and write letters or petitions to, and set up meetings with, members of parliament and public or private health insurers addressing public policy and reimbursement issues regarding myeloma.
  • Promote your myeloma patient group and publish resolutions (formal statements of intent on specific issues), position papers (viewpoints including background data) and policy statements.
  • Draft and submit motions (issues put forward for discussion and debate at local, national or international annual general meetings of your association or organisation).
  • Even if you or your organisation cannot directly participate in political campaigns or influence specific legislation, be sure to inform as many people as possible about ongoing issues and suggest what the appropriate steps should be.
  • If you are a myeloma patient or a family member and there are no patient support groups in your area, consider initiating a group yourself.
  • If you haven't already done so, consider joining the Myeloma Euronet and other European coalitions (e.g., the European Cancer Patient Coalition) to make sure the voice of myeloma patients is heard across Europe.

There are many ways to becoming a myeloma patient advocate and it is very easy to get involved. If you would like to be an advocate but don't know where to start, contact us. We can put you in touch with an organisation that can help you do this.

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