Leukemia SPORE Support Group
Leukemia is a heterogeneous group of hematologic disorders. An estimated 61,780 people in the United States were expected to be diagnosed with leukemia in 2019. (Leukemia & Lymphoma Society.) 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 four 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.
The Leukemia Patient Advocate Group is the foundation for Leukemia advocacy at MD Anderson. Our team members include:
Members: Kal Malik, Ted Poe, Adalio Sanchez, Shylanda Tottress
PI: Marina Konopleva, M.D., Ph.D.
Administrator: Laura Sasse
- 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.
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 have joined us at our annual Internal Advisory Board meetings since 2011. 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.
- 61,780 new cases were expected to be diagnosed in 2019
- 22,840 patients were expected to die from leukemia in 2019
- 86.8% CLL five-year relative survival rate from 2007 to 2013
- 28.1% AML five-year relative survival rate from 2007 to 2013 ; 68.8% for children under 15
- 71.6% ALL five-year relative survival rate from 2007 to 2013; 90.6% for children under 15
- 68.7% CML five-year relative survival rate from 2007 to 2013
- In 2019, an estimated 399,967 people in the United States were living with or in remission from leukemia
Source: Leukemia & Lymphoma Society
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.