MPN Patients' Bill of Rights

The MPN Patients' Bill of Rights helps establish and promote awareness of core elements central to quality MPN patient care. Myeloproliferative Neoplasms (MPNs) includes three closely related chronic blood cancers: Myelofibrosis (MF), Essential Thrombocythemia (ET), and Polycythemia Vera (PV) with signs and symptoms that vary in occurrence and severity and may progress over time.  People who receive a rare MPN diagnosis may feel isolated and fearful of shortened life but many or most can lead a fulfilling life with a substantial life expectancy. Patients must learn about their disease and participate actively in their care.


Diagnosis – Prognostic Scoring Systems: DIPSS, MIPSS, SSTT 

  • Patients have the right to receive a clear and correct diagnosis determined through state-of-the-art diagnostic testing consistent with published protocol – presented in a language they understand.
  • Patients have the right to seek a second opinion from a physician who is knowledgeable in MPNs.
  • Patients have the right to know that diagnostic tools exist that can help their doctors in correctly diagnosing and giving a prognosis for their MPN.

Treatment - NCCN Guidelines for Patients | Myeloproliferative Neoplasms. 

  • Patients have the right to ask their doctor or clinic to communicate their treatment plan and its potential financial and logistical implications, in a language they understand, and which is responsive to their goals. This should outline what treatment outcome is expected, when more intervention may be needed and why.
  • Patients have the right to evidence-based treatment information.

Impact on Reproductive Health – MPNRF’s Women and MPNs, Reproductive Health and MPN, Women and MPNs: Blog Post

  • Patients have the right to be informed how their diagnosis and treatment plan may impact reproductive health for both men and women, and receive appropriate treatment

Financial support – MPNRF Financial Resources 

  • Patients have the right to understand how to select insurance plans that optimize access to care.
  • Patients have the right to access a social worker or patient navigator to help find financial information.
  • Patients have the right to request financial relief for medications through co-pay and access programs.
  • Patients have the right to multiple appeals under their insurance plan if a test, treatment or appointment is denied.

Access to treatments - NCCN Guidelines for Patients | Myeloproliferative Neoplasms. 

  • Patients have the right to access appropriate medications and treatments not dictated by insurance but by their doctor's recommendation, (including off-label usage) at a sustainable cost.

 


Access to Information and ways to seek help – MPN Patient Resources

  • Patients have the right to access accurate scientific information from independent and reputable sources such as academic institutions, health care professionals’ offices, and peer-reviewed articles.
  • Patients have the right to access education and support from respected patient advocacy organizations, online communities, and health media channels – online, in-person and telephonically.

Quality of life - myMPN, Nutrient Study and Yoga Study

  • Patients have the right to keep their doctors informed of how their symptoms impact quality of life and what aspects they would like to improve.
  • Patients have the right to care that improves quality of life and to understand how their doctor can continuously look for ways to improve their quality of life.

Caregiver support – Caregiver Resources 

  • Patients have the right to include their caregiver(s), family and friends in consultations with healthcare teams.
  • Patients have the right to connect their caregiver(s), family and friends to quality information sources.

Workplace structure – Cancer in the Workplace

  • Patients have the right to disclose or not disclose their diagnosis to their employers.
  • Patients have a right to protect themselves from illegal discrimination or unfair judgment.

Clinical trial information – MPN Clinical Trials 

  • Patients have the right to access clinical trial information and inquire about trials with their doctor, at any point in their journey to enhance understanding of the potential benefit, risks, and financial and logistical obligations.
  • Patients have the right to participate in trials if they meet the eligibility criteria.

Working group members include David Alexander, MPN Education Foundation/MPN-NET, Ann Brazeau, MPN Advocacy and Education International, Emily Dunlap, The Life of a Vaguely Neurotic MPN Patient, Ron Kruszewski, Leukemia & Lymphoma Society First Connection, Marina Sampanes Peed, an MPN patient who underwent a successful SCT, Andrew Schorr, Patient Power and Michelle Woehrle, MPN Research Foundation.

Additional stakeholders include CancerCare, Cancer Support Community (CSC), National Organization for Rare Disorders (NORD), Leukemia & Lymphoma Society & PV Reporter.

If you would like to support more initiatives like the Patients' Bill of Rights, please considering making a donation to MPN Research Foundation by clicking here

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