Why am I not surprised?

Joan M · 01-25-2013, 12:27 PM

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

Joanne S · 01-26-2013, 01:59 AM

Pharma priorities---$$$$$---greed!
Terribly

while patients --- casualities!
Sad, sad, sad! Pathetic!

Jackie07 · 01-26-2013, 10:44 PM

I'd had my genetic testing done by Myriad through my doctor/hospital/health insurance. At first my doctor was reluctant to order the testing because I did not fit the ethnic profile and he did not think the Jews in Kaifeng, China could have had anything to do with a Chinese immgrated from Taiwan.

But it was approved (probably because of the recurrence) and I got some blood drawn in the hospital (?) and a month (2?) later received the result. I did have a tiny bit of BRCA variant gene feature that was deemed 'a variant of uncertain significance' (BRCA1-VUS). Later, after another family member was diagnosed with an HNPCC related cancer, I requested and was approved to have a prophylactic hysterectomy/oophorectomy.

The surgeon told us afterwards that there's hyperplasia in the lining of the uterus already. I was glad to have been on this board to learn all sorts of BC-related informaton. (One of the members had told me about the history of the Jewish diaspora in China...)

Jackie07 · 01-26-2013, 10:54 PM

'lizabdgh had posted a thread on the Myriad case:

http://her2support.org/vbulletin/sho...ght=BRCA+genes

'lizbeth · 01-27-2013, 11:36 AM

Yes, I did post about this company. I want them to make a profit. But the current situation is detrimental to BRCA+ cancer patients.

My friend is in a Stanford study for a PARP inhibitor. We suspect the treatment is the difference between beating cancer and progression. However, it was iffy about her being in the trial. Due to the small population the treatment will not likely be profitable.

I don't know the particulars. I only know the current system of cancer research does not favor the patient. I see person after person who loses their life to cancer because a treatment in a clinical trial is not available to them. I see others who participate and still do not receive the new drugs. Their death is an acceptable loss to ensure the integrity of the data.

I'm in a clinical trial, I also could be an acceptable loss. However, I could be one of the lucky ones who is gaining quantity and quality of life.

I don't agree with the system. But we must participate by joining clinical trials. We must push for treatments that increase quality of life and quantity. To have the industry let go of treatments that would not longer serve in our best interest.

KDR · 01-27-2013, 05:29 PM

Hi, Jackie
Were you referring to the Jewish ghettos of Shanghai? Many of them were Ashkenazi, I believe. Do you have lineage to this...as BRCA is very common in this population. Interested to know that part. And miss your father's image.
Warmly
Karen

Joan M · 01-27-2013, 07:18 PM

Jackie,

Thanks for the link to 'lizbeth's thread. It was a very concise explanation of the Myriad Genetics case. I can understand how there could be a link with a BRCA1/2 mutation (with a slight twist). Last year, a friend of a friend who has never had breast cancer had a genetic profile done through 23andMe. She's mostly Norwegian American, but 13% of her genes are of Asian origin. Genes get passed on, and sometimes geography is not a boundary. It was good that you followed through on being tested.

'lizbeth thanks for posting the thread and participating in a clinical trial. I would agree about women not being able to obtain a new drug because they don't fit the criteria precisely. It's very frightening. I can tell that you are aware of the politics that are often involved in cancer research and clinical trials. As an advocate, I often become frustrated when dealing with pharmaceutical companies. They frequently want us to connect them to potential enrollees, but then they're not responsive if we want to get involved with clinical trial design.

Joan

Jackie07 · 01-28-2013, 02:17 AM

Marcia (Soccermom) was the one 'alerted' me about the 'Jews of Kaifen'. http://www.sino-judaic.org/index.php...g_jews_history The ancient Capital located in Henan Province is not very far from my late Father's hometown in Yunnan. My grandfathers on both sides were merchants - and it was through that connection my parents met each other and were married after the War was over.