Global Myeloma Action Network (GMAN) developed a patient bill of rights, the International Myeloma Patient Charter, to ensure that no matter where in the world a person lives the following principles apply to people affected by multiple myeloma and those involved in their lives and treatments. We believe that all parties involved in a patient’s journey have a responsibility to meet the expectations expressed in this document.

The goals of GMAN are to raise the profile and enhance the capabilities of patient advocacy groups around the globe and therefore:

  • Elevate global awareness of multiple myeloma
  • Ensure access to treatments and establish a fundamental level of patients’ rights
  • Improve patient outcomes through earlier diagnosis
  • Advance innovation in blood cancer through advocacy and clinical trial engagement
  • Become a recognized global voice and advocate in multiple myeloma

 

People with Multiple Myeloma Have the Right to:

  • Equitable and timely access to safe, effective, appropriate multiple myeloma treatment, care and support.
  • Affordable access to medications and high-quality care, regardless of a person’s income or where they live.
  • Timely diagnosis followed by timely, appropriate treatment, education and advice from their primary physicians, educators, nurses, pharmacists, and other appropriate specialists and advocates.
  • Emotional and mental health support, as well as support for their caregivers.
  • Be an active partner in decision making and information sharing with their health care providers.
  • A second opinion and/or to change their primary physician or medical teams.
  • Access to their own medical records and other health information, and have it easily understood.
  • Information about myeloma, education and care that takes into account a person’s age, culture, religion, personal wishes, socio economic status, language and education levels.
  • Privacy and confidentiality of their personal information protected. Personal privacy is maintained and confidential handling of personal health and other information is assured.
  • Avoid unnecessary suffering and pain in each step of the illness.

 

There Is an Expectation That People with Multiple Myeloma Will:

  • Be honest and open with their health providers about their current state of health so that the most suitable treatment plan can be prescribed for them.
  • Actively seek out education, information and support to live well with multiple myeloma.
  • Respect the rights of other people with multiple myeloma and health care providers.

 

Caregivers Have a Right to:

  • Multiple myeloma information, education and support that takes into account a person’s age, culture, religion, personal wishes, language and schooling.
  • Emotional and mental health support.
  • Understand that the patient is receiving the best possible care.
  • Be an active partner in decision-making with the patient and their health-care team, should the patient agree.

 

There Is an Expectation That Governments Will:

  • Adopt comprehensive health policies and plans for the diagnosis, and treatment of multiple myeloma.
  • Collect data on myeloma, such as: costs, incidence, survival, mortality and complications.
  • Guarantee equitable and timely access to myeloma treatments,
  • Provide access to treatment for all multiple myeloma patients.
  • Provide a favorable research environment to promote discovery and access to clinical trials for innovative treatments.

 

Health-Care Providers Have a Right To:

  • Ongoing training, funding, and the treatments and tools needed to provide high-quality multiple myeloma care.
  • Access to appropriate treatments for their patients when they need them.

 

There Is an Expectation That Health-Care Providers Will:

  • Utilize up-to-date, evidenced-based clinical practice guidelines when caring for people with multiple myeloma.
  • Help people with multiple myeloma and their caregivers navigate the health care system in their country/state/region.
  • Ensure the patients' privacy and confidentiality and that personal information is protected. Personal privacy is maintained and proper handling of personal health and other information is assured.

 

There Is an Expectation That the Pharmaceutical Industry Will:

  • Provide safe, effective, tested and approved medications.
  • Provide compassionate use programs.
  • Continue to work collaboratively, and partner with patient groups in a transparent and ethical manner.

 

There Is an Expectation That GMAN and Member Organizations Will:

  • Advocate for the rights of people living with multiple myeloma.
  • Raise public awareness about multiple myeloma.
  • Work to ensure the accuracy of information about multiple myeloma in the public domain.
  • Enhance partnerships with researchers and health professional.

 

  Access to treatments and Medications Access to support Privacy and Confidentiality Diagnosis Education and Information Equitable Access Policies and Strategies
Patients Equitable & timely access to safe, high-quality myeloma treatments.

The right to second opinion and/or to change their primary physician.

Myeloma information, education and care that takes into account a person’s age, culture, religion, personal wishes, language and schooling. Privacy and confidentiality of personal information is protected. Personal privacy is maintained and proper handling of personal health and other information is assured. Timely diagnosis and advice from the primary physician, nurse and other appropriate specialists and advocates. Be an active partner in decision making with their health care providers.

To have access to their medical records and other health information and have it easily understood.

Information, education and care that takes into account a person’s age, culture, religion, language & schooling.

Affordable and timely access to medications and high-quality care, regardless of a person’s, race, religion, income or where they live. Equitable access to safe, high quality myeloma treatment, care and support.
Caregivers   Emotional and mental health support. An understanding that the patient is receiving the best possible care.     Information & education that takes into account a person’s age, culture, religion, personal wishes, language and schooling.   The right to be able to navigate the health care system in their country/state/region.
Health Care Providers Work where support from specialists who provide myeloma care can be obtained within a reasonable time. A right to ongoing training, funding and the tools needed to provide high quality myeloma care. Ensure the privacy and confidentiality of personal information is protected. Personal privacy & proper handling of personal health information is assured. Diagnose people living with myeloma as early as possible with a multidisciplinary approach. A right to ongoing training, funding and the tools needed to provide high quality myeloma care.   Help people with myeloma and their caregivers navigate the health care system in their country/state/region.
Government Provide safe and appropriate treatment to all myeloma patients.   Ensure the privacy and confidentiality of personal information is protected. Personal privacy & proper handling of personal health information is assured.   Collect data on myeloma, including costs, incidence, survival, mortality, complications, and to regularly evaluate whether progress is being made. Guarantee fair access to myeloma treatments, care and education, no matter what a person’s income or where they live. Form comprehensive policies and plans for the diagnosis, and treatment of myeloma.
Pharmaceutical Industry Provide safe, tested & trialed and approved medications that deliver the efficacy that they promote.

Make true & proven claims regarding the efficacy of medications & treatments

 

      Make true & proven claims regarding the efficacy of medications & treatments.   Work with government and relevant authorities to make treatments available to all patients.
Myeloma Support Organizations including GMAN Advocate for equitable and affordable access to myeloma treatments, care, medications, clinical trials and latest treatments regardless of where a person lives or their income, and wherever and whenever possible to ensure the delivery of these principles.       Raise public awareness about myeloma.

Work to ensure the accuracy and currency of information about myeloma in the public domain.

Advocate and provide for equitable access to myeloma education, medications, clinical trials and latest information regardless of where a person lives or their income and wherever and whenever possible ensure the delivery of these principles. Strongly advocate for the rights of people living with myeloma and where necessary represent the myeloma community to government, health professionals and/or systems and the pharmaceutical industry

Partner with researchers and health professionals to improve the planning, provision and quality of myeloma treatments and care by promoting and applying research.

Implement and measure impact of Myeloma Patient Charter of Rights.

Ensure achievable goals and metric and the tools required are available to the stakeholder in this charter and member groups in GMAN.

Hold each stakeholder in this charter and member groups accountable for their role in the charter.

Give Where Most Needed

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