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Patient Advocate Group

Leukemia SPORE Support Group

Abstract

Leukemia is a heterogeneous group of hematologic disorders. An estimated 48,610 people in the United States will be diagnosed with leukemia in 2013. The continued development of a patient advocate support group will enhance the research effort of the SPORE and will provide benefit to leukemia patients. 

Through the MD Anderson Leukemia SPORE, we have developed the Leukemia Patient Advocate Group (LPAG). Members include three patients with different types of leukemia, the administrator of the SPORE Grant and one investigator. 

The mission of the LPAG is to obtain the support needed to establish this program as a component of the ongoing SPORE.

In summary, with the support of the SPORE and our institutional commitment, we hope to enhance access to leukemia SPORE-initiated research throughout the country, and to educate and inform patients and caregivers alike on new treatment advances in leukemia.

Who We Are

The Leukemia Patient Advocate Group is the foundation for Leukemia advocacy at MD Anderson. Our team members include:

Leader: Ken Geihsler
Co-Leaders: Susan Massman, Janice Vinson
PI: Hagop Kantarjian, M.D.
Administrator: Laura Sasse

Goals

  • To expand the number of members to include caregivers as well as additional patients
  • To facilitate access to Leukemia SPORE-initiated research throughout the country
  • To educate community and health professional on patient care and treatment
  • To enhance patient services
  • To continue to work on patient education and awareness as it relates to leukemia and clinical trials.
  • To transmit the value of research to patients and communities.
  • To help identify research gaps in translating science that is readily understood by the lay person.
  • To assist and support researchers who are leading efforts to resolve issues to improve clinical trials for participants through better designs, consent forms and patient information.

Leukemia SPORE Patient Advocate Involvement

There are various ways to incorporate patient advocates, for the past several years, we have included our advocates in an advisory level to participate within our SPORE. We started in 2005 with two of our team members joining us at the winter hematology meeting in Duarte, California. Our PIs felt that the advocate contributions helped them maintain a continuous focus on translation research. 

Our patient advocates, Ken Geihsler, Susan Massman, and Janice Vinson joined us at our annual Internal Advisory Board meeting in December 2011. In 2013, the annual Internal Advisory Board meeting was attended by Ken Geihsler. This ongoing participation within the SPORE has further integrated patient advocates into our SPORE.

The examples provided above have helped us to reach one of our main goals, which is patient advocates helping us to translate research more effectively.

2013 Leukemia Statistics

  • 48,610 cases are expected to be diagnosed
  • 23,720 patients are expected die from leukemia
  • 83% overall survival rate for CLL
  • 24% overall survival rate for AML; 64% survival rate for children under 15
  • 68% overall survival rate for ALL
  • 58% overall survival rate for CML
  • At the present time, there are approximately 310,046 people living with leukemia in the United States

In Conclusion

Our Leukemia Patient Advocacy Group has effectively leveraged support and available resources at MD Anderson to promote our mission. Our SPORE has been enhanced by our advocates and their patient perspectives.


© 2014 The University of Texas MD Anderson Cancer Center