Sunday, August 19, 2018

Medically Underserved Individuals and BRCA Testing Study Results - JAMA article

Knowledge of whether or not you have a hereditary BRCA 1 or 2 mutation can impact the treatment decisions of women diagnosed with breast and ovarian cancer.

Last week, researchers reported the results of an analysis of the Southern Community Cohort Study (JAMA). From 2002-2009 over 49,000 women were recruited to the Southern Community Cohort Study from community health centers in twelve southeastern states. Of those women 2002 had breast, ovarian or both cancers. Of that group 718 (62% black and 33% white; 689 breast cancer and 30 ovarian cancer) were covered by medicare. Sixty-two percent of the women reported an annual income of less than $15,000. Ninety-two of the 718 women would qualify to have Medicare cover the cost of BRCA testing.

Amy Gross, PhD Vanderbilt University reported that of those 92 women only 8 had BRCA testing within five years of diagnosis.  Analysis of the medical records from the twelve states showed that Arkansas, Louisiana, Tennessee, and West Virginia had zero tests.  When data from 2000-2004 was examined it was found that no eligible women were given a BRCA test. Later years showed an increase in testing but in 2010-2014 only ~ 15% received the test. “This testing rate is lower than what I have seen reported in terms of any other study with the same time and eligibility constraints,” Gross said.(VUMC Reporter) The numbers did improve over time

While the sample size is small there could be a few reasons for why the numbers are so low including lack of interest on the part of the patient, lack of referrals for testing by physicians or lack of available resources. The researchers concluded that "novel strategies are needed to ensure that medically underserved women with cancer receive appropriate referral and access to genetic testing."

After reading this report I wonder...
How these numbers from medically underserved individuals compares to women covered by other insurance plans and/or those treated at larger cancer centers during the same time period?

We know that BRCA status is critical in deciding which treatments a women with ovarian cancer provide the most benefit but it also impacts the ability of family members to reduce their risk of breast and ovarian cancer. What can we do to insure that all women diagnosed with epithelial ovarian cancer have access to BRCA genetic testing as recommended by the SGO.

Every Day is a blessing! 

Monday, August 13, 2018

Summer Blogger Challenge - Nancy's Point

I have followed Nancy's Point written by Nancy Stordahl for a while now. I  reviewed her book on this blog in 2016. When she posted a blogger challenge I thought - Why not.  So here goes.

How long have you been blogging (or reading blogs)?
I have been blogging since December of 2007. 

How has your blog changed?
This blog originally was more a way to share my experience as a late stage ovarian cancer survivor. As my role as an advocate became more research focused my blog has morphed into more of a place to hear the latest news about ovarian cancer research - from conferences like ASCO, AACR and SGO as well as newly published studies and clinical trial designs. I continued to weave my experience into a few blog posts a year. 

What is your biggest blogging challenge/frustration?
Finding the time to blog. 

What is your favorite post that you’ve written (or read)?
I think it is probably the one I wrote for the 10th Anniversary of writing this blog.

What are your goals for your blog? (Why do you read blogs?)
I hope to continue to share information about the latest research and approved drugs for ovarian cancer. 

How many blogs do you read on a regular basis? 
I probably read about a half a dozen - some by individuals I know and some blogs from organizations. 

How do you determine what to share and what not to share; in other words, do you have blog boundaries? (or comment boundaries)
I will only post things of interest to women diagnosed with cancer or relevant to my journey with the disease. I do not share any political commentary although I will share if I have written to Congress about a specific bill of importance to cancer patients. 

When things get hard, what keeps you blogging (or reading blogs)? 
I don't worry about blogging as much as I did initially. Sometimes I place an undue burden on myself such as when I say I will write something new every day during September - Ovarian Cancer Awareness month. I did that twice and it really stressed me out. So I just wait till I get and idea or read something I want to share to blog. 

What is your biggest Cancer Land pet peeve today, right now, this minute?
Biggest peeve - When I read articles online about the latest "cure" and it turns out the treatment has never been tried in humans.  

What one piece of advice would you offer to a new blogger?
Just do it! Start off with a simple layout and write about what is important to you. There is someone else out there who will benefit from what you write. 

Share something most people do not know about you. A secret sort of thing.
I love Disney World and my favorite character is Winnie the Pooh. I can't wait to see the latest movie. 

What do you enjoy doing in your spare time?
I love to paint quilts and dogs with an occasional  landscape. Painting relaxes me and makes me forget my worries.

Every Day is a Blessing!