[Joan M]

How some pharmaceutical companies can benefit under the guise of advocacy.

Some how I feel like Shannon’s experiences below could have appeared in Metropolitan Diary, which runs in The New York Times every Monday. The column is basically quips that readers submit about what they overheard on a bus, for example. The quote below was copied from an email I received on a ListServ for cancer advocates.

There are many bc patient advocates on this board, but it's good to know where to draw the line with pharma and other companies that blend pushing their agendas and patient advocacy, such that advocacy really becomes a dog-and-pony show and not actually advocacy at all.

As you may or may not know, Myriad Genetics holds the patents for the BRCA1/2 genetic mutations for breast cancer, as well as the very expensive testing kit. The patents have been challenged in court, and the Supreme Court has decided to take up this case. Their decision will be monumental for us. Think about it: The tests are very expensive. if a woman tests positive for one or both the genes, she has nowhere to go to retest that result. In turn, she could decide on a double mastectomy. The Supreme Court will interpret a specific part of patent law.

(I removed some text from the second paragraph, because it specifically named a pharmaceutical company)

Joan

"Well, I've had two very eye-opening experiences this week that I must share. I was having frozen yogurt with my daughter's 5th grade class, chatting with a mom. She told me she was a cancer research advocate. Imagine my surprise and excitement...I asked her what she was working on and she told me she is employed by a company here in Seattle that is hired by Pharma to seek out patients using their drugs, have the patients tell their stories in video or for printed work. In addition, she often lines up travel, hotels for them to attend conferences so they can tell how a particular drug played into their treatment. I had several moments of keeping my emotional brain in check, weighing the pros and cons of speaking my mind, and decided to walk away knowing we will see each other often this year......Her title is Patient Advocate on her business card.

"And, the second, not so much about research advocacy but about how much work there is to be done...I was invited to attend a smaller health system's breast cancer tumor board. 5 cases to present. As we did introductions around the table, I was introduced to somebody who assisted high risk patients with genetic testing. I assumed a nurse or genetic counselor. She was consulted several times during the meeting about genetic testing. Following the meeting, I chatted with her. I asked for her card. She was an employee of Myriad, who sells the testing kits for BRCA1/2. Imagine having a representative from [a pharmaceutical company] at a Breast Tumor Board with five doctors present and the doctors are deciding what treatment to give a patient - sometimes engaging in discussion with that representative.....I have read about these things but to see it personally was so shocking. I spoke to the breast doctor leading the tumor board and we are scheduled for a follow up next week."

Man, do we have a long ways to go......

Shannon