ARGGG- this is the second week in a row that my post has deleted just after writing it. I'm less than pleased!
I've spend the majority of my week working on the meeting requests for the Greek visits. Coordinating the schedules of 250 people coming to DC for the visits with the meetings with all the members of Congress is quite a task! I've been staring at the same spreadsheet all week and fear it is going to start haunting my dreams. (It really isn't too bad.. and I'm off to FL tomorrow for the week, so I have a nice break).
On Wednesday I went to meetings with members of Congress with one of Kevin's pro-bono clients, an army lieutenant colonel who just lost his wife to breast cancer. Here is a little bit of background on breast cancer and the BRCA gene (which his wife had) before I go into explaining the meetings:
-A typical woman has a 12.5% chance of developing breast cancer
-A woman with the BRCA gene (dominant genetic variation) has up to an 85% chance of developing breast cancer, and there is a test to determine if you're a carrier of the gene
-If a woman has the BRCA gene she can take preventative measures before developing breast cancer- anything from lifestyle changes up to a preventative double mastectomy. (Which, if you follow celebrity news, is what Christina Applegate did after learning she was a carrier of the BRCA gene). Women who choose this radical surgery early on have greater than a 90% chance of never developing cancer.
In the case of the lieutenant colonel's wife, she developed breast cancer and after sharing the news with her family found out that there was a history of the BRCA gene in her family. Her father's sister had developed breast cancer years before, gotten the test, and found out she had the BRCA mutation. The sister told all of her siblings and urged them to tell their children, and unfortunately this woman's father didn't tell her. After the fact, the woman's oncologist said if he had known her full family history he would have tested for the BRCA gene, and recommended a double mastectomy after finding it.
So, you're probably wondering where this ties into lobbying and my work at Patton Boggs. Australia just amended its medical privacy laws to allow doctors in the public sector to disclose information such as diseases caused by genetic variations to relatives if the patient refuses to do so, so that the relatives can have a test done (if they desire) and take preventative measures if necessary. We met with members of Congress so that the lieutenant colonel could share his story and to gauge their feelings on the Australia law.
Doing something like that in America would be extremely difficult because it would require opening up the HIPAA laws, and people would fear for their privacy. The meetings were a first step to brainstorm with members and discuss possible options to take, so that people can be more informed about their health. In a perfect world, families would pass medical history along, but that doesn't always happen. In the meetings the lieutenant colonel shared that his wife's oncologist now has a breast cancer patient with the BRCA mutation in her mid-40s with daughters in their mid-20s, and the mother won't tell her daughters about their increased risk for cancer. Although he wants to tell them so that they can make informed decisions about their health, he cannot. Although there is no clear solution, this type of meeting was very interesting because it was so different than the typical meetings where constituents are asking their members of money to fund certain projects.
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