Multiple Myeloma: International Bill of Rights
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 healthcare providers.
- A second opinion and/or the right to change their primary physician or medical teams.
- Access 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. Personal privacy is maintained and protected, 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 healthcare 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 healthcare providers.
Caregivers Have a Right to:
- Access 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 healthcare 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.
Healthcare 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 Healthcare 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 healthcare system in their country/state/region.
- Ensure patients' privacy and that confidentiality of 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 healthcare professionals.