Patient Advocacy
History
Alamo Breast Cancer Foundation established the Patient Advocate Program as a component of the San Antonio Breast Cancer Symposium (SABCS).
ABCF is privileged to be associated with the SABCS, the largest single cancer conference in the world.
Why Patient Advocates are Necessary
Educated patient advocates provide a unique perspective which cannot be duplicated by others. They are the ones who ultimately receive health care services and along with their families, are required to engage and navigate the complexities of the health insurance system. They have no agenda in the scientific community other than looking for the best science; they have no conflict of interest. Their perspective cannot be duplicated by the doctors who care for them or the scientists who search for answers, even if these doctors and scientists too are patients. A lay advocate perspective is key to moving forward to help end breast cancer.
The SABCS and Patient Advocate Program take place in early December of each year at the Henry B. Gonzalez Convention Center in San Antonio, Texas. By attending this conference, patient advocates learn about the most recent breast cancer research so they can disseminate the information to their local organizations. ABCF is privileged to be associated with the SABCS, the largest single cancer conference in the world.
During May of each year, the ABCF advocate scholarship application is posted on the ABCF website. The requirements to qualify for a scholarship are also posted at that time along with the amount of the scholarships.
Background Information on the Patient Advocate Program at SABCS
The program was originally conceived when Drs. Charles Coltman and Kent Osborne observed the increasing number of patient advocates attending the SABCS to better understand the data affecting their advocacy efforts. In 1996, Drs. Coltman and Osborne approached the ABCF with the idea of a collaborative patient advocate program to be held annually in early December in conjunction with the SABCS. From their embryonic idea, the ABCF Patient Advocate Program was born.
Since 1997, ABCF has invited representatives from breast cancer patient advocate organizations from around the world to apply for scholarships (provided they meet the scientific criteria) in order to attend the December SABCS conference plus the education and mentor sessions that ABCF holds for all patient advocates attending. To date there have been over 800 applicants and ABCF has provided scholarships to 540 patient advocates.
Historically the feedback on the Patient Advocate Program has been outstanding. In 2006 the National Breast Cancer Coalition awarded the program the Best Practices in Breast Cancer Award for outstanding achievement and collaborative success. ABCF is very proud of this recognition and hopes to continue this level of impact on the advocacy community in the years to come. In addition, it is an honor that organizations in other countries have begun programs based on ABCF’s Patient Advocate Program.
Advocates in Numbers
Starting in 1998 to 2018 San Antonio Breast Cancer Symposium the Alamo Breast Cancer has been able to fund a total of 542 Patient Advocates worldwide!
Each of our symposium scholarship recipients has their own story and home organization, and we are proud to have been able to bring them to the SABCS throughout the years. As we approach our 20th-anniversary of the patient advocate program, we cannot help but think of how much this program has grown and where we will be in the next 20 years.
Thank you to all of our advocates and symposium committee members throughout the years. We cannot wait to see you again in the future and to welcome new advocates in the years to come.
Additional Advocacy Training Opportunities
-Bob
“Attending the Patient Advocate Program gave me a snapshot of the current state of breast cancer research. There I no other way I could get a sense of the “big picture” of what’s going on. It allowed me the opportunity to meet other patient advocates to share ideas and to recharge my advocacy batteries. The connections are already proving fruitful. I’m a patient advocate involved with cancer research at Cornell University. I met advocates involved at Georgetown University. We’ve gotten researchers at the two programs to begin communicating with each other to share ways of involving advocates in their research areas.”
-Marja
“I am more confident in my advocacy in the Netherlands than before. I was very inspired by the way patient advocacy works in the US. Because of this program, I am now the advisor to the program manager from BVN and I work with her in different projects in organizing the patient advocates from BVN. We make slow progress but it is clear that we had to do something in Netherlands. We now have a patient advisory board with cooperation from BVN and BOOG (the group that coordinates clinical trials in the Netherlands). I am now asked to speak at international symposiums about breast cancer. I feel confident enough to do this thanks to your program in San Antonio..”
-Barbara
“The Patient Advocate Program provided me with excellent background and up to date information. The mentor sessions were able to clarify information. After SABCS, I was able to serve on a DOD review panel. I have now served on two DOD panels. On my end in Puerto Rico, after SABCS I realized the need to train more Hispanic advocates in science to have a voice and to work with scientists. I also wrote an article for the Association of Clinical and Translational Science titled: Scientists and Advocates, A Great Combination which was published.”
-AnnMarie
“After the Patient Advocate program, I was far more confident within the research community and my blogging became much more focused on research and proper dissemination of information. Shortly after SABCS, I was invited to assist on a grant for very basic science research. I wrote the lay abstract and the grant was subsequently funded by Komen at 1 M, the highest funding level. I was brought into the labs to speak with those working under the P.I.’s about the role of the patient advocate in research. Beyond that, because of the tweeting Lori and I did from the presentations, we both became well-respected advocates within the breast cancer community. I was also invited to participate in the AACR Science Survivor program and in 2016 invited to be a mentor in that program. None of this would have happened without your program that lead the way for me. I interviewed Dr. Julie Gralow for one of the You Tube presentations and as a result of that, it was viewed by someone who was scheduling presentations for the SWOG annual meeting. That interview, which I kept on my blog, I was told, was one of the main reasons I was invited to do a presentation for the researchers. Thank You!.”
-Bob
Patient Advocate Scholarships
2019 applicants must agree to the following scholarship requirements before completing and submitting the application. These are considered partial scholarships and may or may not cover your entire trip. Scholarship funds will be distributed once all receipts for reimbursement are received and reviewed.
Application Requirements:
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Only applicants who have not received this scholarship within the past 5 years are eligible
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Must be at least 1 year out of primary breast cancer treatment
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If international must speak fluent English and must hold a valid passport and necessary visas to travel to and from the US.
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Must have completed NBCC’s Project LEAD Scientific Institute or have scientific knowledge of breast cancer through various programs, including but not limited to AACR Science Survivor Program, Research Advocacy Network RAN Scholarships or oncology nurse specializing in breast cancer. OR you must describe your scientific qualifications in breast cancer.
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Must be a member of a Non-Profit patient advocacy organization that demonstrates a charitable, mission, is engaged in patient advocacy activities and provides programs, services and support for people with breast cancer.
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The application must be completed and submitted no later than 10:00 pm (22:00) Central Time on August 31, 2019.
Acceptance Requirements:
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Each application will be assessed on a case-by-case basis.
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All decisions are final. ABCF will not enter into any discussions regarding its decision.
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Recipients are required to make their own arrangements (registration, travel, hotel) either on their own or by using the SABCS services for hotel and travel.
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Upon formal acceptance of their attendance scholarship recipients are committed to attend the SABCS.
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In the event that the recipient is no longer able to attend, they must immediately inform ABCF. Scholarships are not transferable.
Attendance and Work Requirements:
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Must attend the entire SABCS from December 9, – 14 2019.
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Must attend required events
Scholarships will be awarded in the following amounts top those who meet the qualifications and are selected:
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Texas resident: $1,200
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U.S. Resident: $1,700
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Canada, Alaska, Hawaii Puerto Rico: $2,200
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International $2,700
PLEASE NOTE: All scholarships are taxable in the United States and are listed in U.S. currency.
Hot Topics Mentor Sessions
In conjunction with the intense learning experience to be had at the annual San Antonio Breast Cancer Symposium (SABCS) – scholarship recipients, as well as other patient advocates in attendance, are provided with an opportunity to interact with leading medical experts during ABCF’s three-day Hot Topics Mentor Sessions.
The Hottest Ticket at SABCS
The panel of experts at the Mentor Sessions report on the most intriguing, valuable and/or controversial research presented that day and then take questions from the audience. The Mentor Sessions are the premier event for all advocates who attend SABCS, providing them the opportunity to interact with recognized breast cancer experts in an intimate learning environment.
Alamo Breast Cancer Foundation and the National Breast Cancer Coalition Fund (NBCCF) co-sponsor the Project LEAD Advanced Topics held at SABCS. This educational program, conducted by NBCCF, helps Project LEAD patient advocate graduates and scholarship recipients to update their knowledge on clinical science and helps prepare them for the sessions at the SABCS. This session is usually held on Tuesday morning.
ABCF also partners with the American Association for Cancer Research (AACR) to present an educational program for all patient advocates who attend the SABCS. This special session is held during lunch on Wednesday. This program is designed to help patient advocates better understand the basic science of breast cancer by holding a mini-science course with a short Year in Review.
ABCF partners with AACR (Policy division) and the FDA to provide patient advocates an opportunity to hear new programs at the FDA oncology and to answer questions. This meeting is open to all patient advocates and is held during lunch on Thursday.
