Patient Advocate Group
Leukemia SPORE Support Group
Abstract
Leukemia is a heterogeneous group of hematologic disorders. An estimated 59,240 new cases will be diagnosed in 2007. 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 two 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: Jean-Pierre Issa, 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
Leukemia SPORE Patient Advocate Involvement
There are various ways to incorporate patient advocated, this year we have included our advocates in an advisory level to participate within our SPORE. We started 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 continous focus on translation research.
Our patient advocate, Ken Geihsler, joined us at our annual Internal Advisory Board meeting in May 2005. In 2006, the annual Internal Advisory Board meeting was attended by Ken Geihsler and Susan Massman. 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.
2007 Leukemia Statistics
- 59,240 cases will be diagnosed
- 21,790 patients will die from leukemia (12,320 males and 9,470 females)
- Males are expected to account for 56% of leukemia cases
- 74% overall survival rate for CLL
- 20% overall survival rate for AML; 54% survival rate for children under 15
- 65% overall survival rate for ALL
- 44% overall survival rate for CML
- At the present time, there are approximately 218,659 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.
In the upcoming year, we hope to apply for supplement to the Leukemia SPORE grant which will enable us to continue our mission and expand our program.