FOR IMMEDIATE RELEASE
The Bili Project Foundation Joins GI Cancers Alliance to Elevate Patients’ Voices Against Gastrointestinal Cancers
Twenty organizations unite to raise awareness, provide education and advocate for gastrointestinal cancers
Burbank, CA (JUNE 7, 2016) — The Bili Project Foundation joins 19 other cancer advocacy groups from around the United States to form the GI Cancers Alliance, committed to the fight against gastrointestinal cancers, which include many of the leading cancer killers.
The mission of the GI Cancers Alliance is to raise awareness, provide education and advocate for the prevention, treatment and cure of gastrointestinal cancers through a collaboration of advocacy groups, industry and institutional partners.
The groups’ organizers have come together because of a shared goal to create a stronger more unified voice in the fight against gastrointestinal cancers.
The groups’ leadership met June 4 during the ASCO Annual Meeting in Chicago to elect its chairs: John Hopper, executive director of the Fibrolamellar Cancer Foundation, and board director of the National Pancreas Foundation; and Martha Raymond, executive director of Michael’s Mission and founder/CEO of The Raymond Foundation and Alliance co-chair.
In addition to The Bili Project Foundation, the 19 other organizations of the Alliance include Pancreatic Cancer Action Network, Colon Cancer Alliance, Prevent Cancer Foundation, Beat Liver Tumors, The Cholangiocarcinoma Foundation, Colon Cancer Challenge, Debbie’s Dream Foundation: Curing Stomach Cancer, Esophageal Cancer Action Network, Fibrolamellar Cancer Foundation, Fight Colorectal Cancer, Gastric Cancer Foundation, Global Liver Institute, Hope for Stomach Cancer, Michael’s Mission, National Pancreas Foundation, No Stomach for Cancer, The Raymond Foundation, The Ruesch Center for the Cure of GI Cancers, and Target Cancer Foundation.
The participating groups represent the various types of cancers that make up gastrointestinal cancers, or the group of cancers that affect the digestive system. This includes cancers of the esophagus, gallbladder, bile duct, liver, pancreas, stomach, small intestine, bowel (large intestine or colon and rectum) and anus.
Lilly Oncology and Taiho Oncology are the founding industry non-voting members of the GI Cancers Alliance. They provide funding for advocacy activities and education.
The Alliance will focus on creating programs to raise general awareness about GI cancers and create resources and tools that will fill gaps for patients where they can make the largest impact.
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TODAY IS THE DAY! World Cholangiocarcinoma Day is an international effort to raise much-needed awareness of cholangiocarcinoma, a devastating cancer that occurs in the bile ducts in or outside the liver. This poorly understood and under researched disease is increasing in incidence globally – we believe collaboration is the way forward! Let’s make a difference and SPREAD AWARENESS about this little known cancer. #WorldCCADay
Michael Lax tells his bile duct cancer story of hope. In May 2014, Michael was diagnosed with Cholangiocarcinoma. After undergoing surgery, in January 2015, Michael was declared cancer free.
World Cholangiocarcinoma Day is an international effort to raise much-needed awareness of cholangiocarcinoma, a devastating cancer that occurs in the bile ducts in or outside the liver. This poorly understood and under researched disease is increasing in incidence globally – we believe collaboration is the way forward.
The Bili Project Foundation is proud to be a partner in first ever World Cholangiocarinoma Day in an effort to raise awareness of this silent killer.
WANT TO GET INVOLVED?
Share the global awareness message on social media, and with friends and family.
We need your help to raise much needed awareness of cholangiocarcinoma. Become part of the collective voice of those advocating for patients with this devastating cancer. Join with us in telling the world that cholangiocarcinoma is a cancer that can’t be ignored.
- Many don’t know what cholangiocarcinoma is, and that lack of awarenesss is a major problem.
- Most with cholangiocarcinoma are diagnosed too late for potentially curative surgery – ways to
earlier diagnosis are desperately needed.
- We need to stand together and tell the world that cholangiocarcinoma is a cancer that can’t be ignored.
- We need to talk about cholangiocarcinoma.
- Find out more about cholangiocarcinoma on the pages CCA: The facts and CCA: The statistics
and on the websites of the World Cholangiocarcinoma Day partners listed on the Home page.
Visit wwww.worldcholangiocarcinomaday.org for more information.
*All information courtesy of WorldCholangiocarinomaDay.org
Gloryanne Bryant, RHIA, CDIP, CCS, CDIP
AHIMA Approved ICD-10-CM/PCS Trainer
Hepatobiliary cancer is a challenge in medicine because it is very hard to detect and is the leading cause of biliary tract obstruction, after gallstones. These cancers are notoriously difficult to diagnose, molecularly and genetically highly heterogeneous, and refractory to standard therapies. Hepatobiliary cancers are the 7th leading care of cancer death in the United States and the 3rd leading cause of cancer deaths worldwide. Hepatobiliary cancers are on the rise in the U.S. with increasing numbers of cases projected.
Risk Factors: Some of the known risk factors for Hepatobiliary cancer are as follows:
- Long-term infection with hepatitis B or hepatitis C
- Heavy alcohol use
- Type 2 diabetes
- Inherited metabolic disease
- Exposure to toxins such as arsenic, aflatoxins, vinyl chloride, and thorium dioxide
- Anabolic steroids
Signs/Symptoms: The warning signs and symptoms which sometimes resemble other medical conditions or problems occur with Hepatobiliary cancers. Signs and symptoms include:
- Abdominal pain
- Poor appetite
- Weight Loss
- Pale stools
- Dark Urine
Diagnosing: Diagnostic tools for Hepatobiliary cancers may include:
Endoscopic retrograde cholangiopancreatography — ERCP is a procedure used to create images of the digestive tract. During an ERCP procedure, doctors insert a thin, lighted tube into the mouth and down through the stomach to produce an image of the surrounding organs and glands.
Magnetic resonance cholangiopancreatography — MRCP is similar to an MRI, except that it uses specialized software to target the pancreas and bile ducts and create detailed images.
X-ray, CT, MR and PET scans are often needed to show the location and extent of the cancer.
Also used are blood samples for tumor makers including alpha-fetoprotein (AFP) cancer antigen 19-9 (CA 19-9) and cancinoembryonic antigen (CEA) may be tested to guide the diagnostic evaluation.
To confirm a diagnosis, doctors will need to remove a small piece of tissue from a tumor for testing. Often, a biopsy sample can be collected during an ERCP procedure, if one is performed.
Treatment: Depending on the location of the tumor, where the cancer originated, the stage of the cancer, and the overall health of the patient, several techniques may be used, either independently or together, to attempt to slow tumor growth or relieve pain. The following are options that may be considered:
- Liver transplantation
External beam radiation therapy is also a treatment option that involves a series of daily outpatient treatments to accurately deliver radiation to the area at risk.
Surgery may be necessary to remove the cancerous tissue as well as any nearby non-cancerous tissue. Surgery may also be used to relieve any blockage of the bile duct or to relieve symptoms.
Stent placement is another treatment choice that will help drain bile that builds up on the area. The stent also helps to bypass the blockage that causes symptoms such as pain or yellowing of the eyes and skin. A stent may be placed temporality until surgery can be performed to remove any cancerous tumor(s) or a permanent stent may be placed.
For coding professionals understanding disease processes and having knowledge of clinical indicators is a foundational competency for accurate clinical coding. Learning and enhancing our knowledge and skills are basic to quality clinical data that can help with research, reimbursement and population health.
References and for more information: http://www.thebillproject.org; http://www.treatcancer.com/hepatobiliary-cancers/; http://www.ucsfhealth.org/newsletters/inside_surgery/summer_2012/new_hepatobiliary_service/index.html
The Bili Project Foundation’s very own Sue Acquisto will be speaking at the Ruesch Patient Symposium at Georgetown University this coming December 2015. The Ruesch Symposium is a 3 day event happening annually. Click HERE to view the full schedule of events. Patients are encouraged to attend.
Sue Acquisto will be speaking during the Disease Specific Breakout Sessions on Liver and Biliary Cancers on December 5th from 10:30AM-11:30AM. She will also be on a panel discussing Measuring Value and Outcomes on December 5th from 12:30 PM-2:00 PM.
The Ruesch Center for the Cure of Gastrointestinal Cancers Mission: Combining expertise in molecular medicine, translational research, and a patient-centered philosophy, the Ruesch Center will realize the dream of individualized curative therapies through research, care, and advocacy.
More than 85 golfers tee’d it up at the 4th Annual Vince Acquisto Memorial Golf Tournament on Monday, October 12, 2015, at Blackhawk Country Club. The winning foursome in the scramble format, with a best ball score of 56, were Susan Acquisto, Dr. Bob Kerlan, Ed Moses and Joy Stephenson-Laws.
After the round of golf, more than 110 dinner guests enjoyed a cocktail hour featuring a silent auction featuring golf memorabilia and wine. The foundation raised a total of $14,643.00 which will go towards continued efforts in finding a cure for hepatobiliary cancers.
If you would like to download any of the photos below, click on the photo and it will redirect you to that photo on Flickr or CLICK HERE to go directly to the album.
Check out photos from the tournament in the album below.
Currently, as of September 11, 2015, there are 211 patients with banked samples in the UCSF Hepatobiliary Tissue Tumor Bank. As mentioned before, the Foundation believes that the ongoing maintenance of such a bank, specifically for Hepatobiliary tumors, will significantly enhance the ability to accurately diagnose and treat patients with these deadly diseases.
The graph below summarizes the patient enrollment data for the Hepatobiliary Tissue Bank. The graph begins from the HBTB activation month and year (August 2012) and charts through September 2015. When the HBTB was activated it started out with 25 cases that were migrated from a pre-existing collection – a clinical trial that began years before the tissue bank opened. The UCSF Medical team definitely has made significant strides in obtaining samples to continue research efforts in finding early detection methods and treatments towards a cure for hepatobiliary cancers.
The collaboration map below shows the institutions across the nation who are working and collaborating together on several projects involving hepatobiliary cancers. The newest collaborator to join in as an HBTB Specimen/Data Collaborator site is Ohio State University. The various projects include genome wide association studies and retrospective studies wherein UCSF accesses the repository of specimens and data in the bank. This sharing of data and specimens allows UCSF, a regional cancer center along with these highly respected cancer hospitals and institutions to work together to advance hepatobiliary cancer research.
Currently, as of July 2015, there are just over 189 patients with banked samples in the UCSF Hepatobiliary Tissue Tumor Bank. The Foundation believes that the ongoing maintenance of such a bank, specifically for Hepatobiliary tumors, will significantly enhance the ability to accurately diagnose and treat patients with these deadly diseases.
The graph below summarizes the patient enrollment data for the Hepatobiliary Tissue Bank. The graph begins from the HBTB activation month and year (August 2012) and charts through June 2015. When the HBTB was activated it started out with 25 cases that were migrated from a pre-existing collection – a clinical trial that began years before the tissue bank opened. The UCSF Medical team definitely has made significant strides in obtaining samples to continue research efforts in finding early detection methods and treatments towards a cure for hepatobiliary cancers.
The collaboration map below shows the institutions across the nation who are working and collaborating together on several projects involving hepatobiliary cancers. The various projects include genome wide association studies and retrospective studies wherein UCSF accesses the repository of specimens and data in the bank. This sharing of data and specimens allows UCSF, a regional cancer center along with these highly respected cancer hospitals and institutions to work together to advance hepatobiliary cancer research.