The following blog is from the Triple Negative Breast Cancer Blog:
by Steve K.
Some months ago a young reporter, Candia Dames, at The Nassau Guardian, the island’s oldest (1844) and most respected newspaper, reported on the fact that scientists had discovered an African BRCA Founder’s Mutation much like the Ashkenazi BRCA Founder’s Mutation I have. I wrote Candia and arranged to meet her July 29th at their headquarters in Nassau. I brought her a copy of the book Positive Results that my daughter and I had written passages in.
I told her that I felt it is important to get the word out that men can inherit the BRCA mutation and pass it on to their children. Turns out Candia lost her mother to breast cancer when she was 24. We had an extraordinarily intense 30 minute meeting and she “gets it.” She had told me in advance, that her time with me would be very short because she was leaving for two week holiday that night. Surprisingly, as we finished talking, she asked me “how would you like to be on TV tonight?”
I agreed and literally 5 minutes later a cameraman came out and shot Candia interviewing me. I think the interview was about 20 minutes long (I think they cut it to 5 minutes-I wasn’t able to view it..my hotel did not carry the channel…unfortunately, to date, I have been unable to get a copy of the interview. I will put it on the blog if I ever get one). I then introduced Candia to my friend who is very ill and it turns out his son was very much in love with her sister. Nassau is a small place..Lots of cousins marrying cousins over the centuries just like Ashkenazi Jews. Good breeding grounds for BRCA.
I am attaching the article Candia crafted in a remarkably short period of time…There is a minor error at the end, third paragraph from the end misquoting me-I had said that fathers can pass the mutation on to their sons and/or daughters who in turn can pass it along to their children. But, overall I think she did an excellent job..and folks got the message that dads can carry this mutation and pass it along.
The next morning I was having breakfast at the hotel and I had a copy of the paper on the table..A waitress came over to me and said “hey, that’s you, right?” and she called her friend over who said “I saw you on TV last night and I am glad I did because I am going to speak to my Daddy…His mother and two aunts and Grammy all had breast cancer early and they all gone..keep talkin’, man..this is important..for my daddy and maybe, me”
The waitress said it so genuinely…even if she is the only one to take action, I feel it was worth the effort…My advocacy work, in this country, feels so right and it was so heartening to have a reporter think the information was important enough to put it TV and on page one of the newspaper. But my satisfaction at getting the information out was tempered drastically by the following incident-
Fast forward a couple of months to last weekend at the ASCO Breast Symposium in National Harbor, MD. I was walking through the exhibit hall and I hear someone yelling “hey, Steve”…I turn and it is my friend’s surgeon from the Bahamas. He is an exceptionally nice young man…my guess is late 30’s…hey, that’s young to me…I will be 67 in a few months. I told him that I wanted to go back to the Bahamas and raise awareness and try to get more women counseled and tested for the new BRCA1 African mutation…”no, please don’t do that..” “Why?” “If a Bahamian insurance company finds out that a young woman has the BRCA1 mutation they will drop her coverage and her family, too…as a “pre-existing condition.”
In 2008, our Congress passed the GINA law which helps protect folks here with their health insurance..not so for life insurance…but at least for health there are some protections…albeit not perfect. But no such law exists in the Bahamas and if a young woman wants to test and the insurance company knows her status she can forget about getting her surgery paid for. Of course all genetic mutations are pre-existing…and the insurance companies use the fact that they are to deny women coverage.
The doctor told me that he treats his patients “as if they are positive”…”wow, what if they are not positive?”…”yes, I know, but what is the alternative?” I am afraid I did not have an answer for him. All I know is that teenagers and women in their 20’s, 30’s are being diagnosed with aggressive triple-negative-breast-cancer and it simply breaks my heart that these young women can’t test…can’t have prophylactic risk-reducing breast or gynecologic surgeries that will be covered by insurance..Lives are being lost because of these Neanderthal insurance policies..I think we can assume that there are no previvors doing risk-reducing surgeries and getting the procedures paid for as is the case in the U.S. A Bahamian BRCA1+ woman is denied coverage if the insurance company knows she has the mutation. If the insurance company doesn’t know the woman has to wait until she has breast or ovarian cancer until she has insurance coverage. There is no way a woman, at high-risk, in the Bahamas can try to test and then protect herself if she wants the surgery covered by insurance. I would say that 99% of the women in the Bahamas would not be able to pay for the surgeries on their own. My daughter faced odds that meant that she faced an approx. 85% risk of getting breast cancer in her lifetime and a separate 45% risk of getting ovarian cancer in their lifetime. These odds are tragically sad and the policy of “pre-existing” condition denial in the Bahamas is truly pathetic and unjust in my view.
As suggested by my dear friend’s surgeon, I am going to try to join the small, but growing, effort for new legislation in the Bahamas. It seems, according to the surgeon, that the Bahamian insurance companies take things to another pernicious level by not only denying the woman but also refusing coverage for her family. Hopefully, over the next several years we can get the laws to change. In the meantime, my heart aches. So, the waitress, above who wanted her daddy to test better tell him to do it surreptitiously..And if he and she, G-d forbid, have the BRCA1 mutation, what do they do with the information? Increase surveillance, at a high-risk clinic, would be the answer in the U.S. but what about the Bahamas? As I think about I guess it is important for the BRCA information to be made public in the Bahamas. On a practical basis, for sure there are Bahamian legislators who have been touched by early-onset breast or ovarian cancer in their families and they will, most likely, be the ones to champion the legislation. At least that is my dream and I am going to do my best to have the legislation changed.
As an aside, what is obvious to me, out of all this is that contrary to many racist beliefs held in this country that white is superior to black or brown the Human Genome Project of a few years ago has shown that we are all people, almost identical, most of the times, DNA-wise. Eighty percent of BRCA1+ women in the U.S. who have breast cancer have triple-negative breast cancer and the overwhelming majority of Bahamian women who carry the African BRCA1 founders mutation, I am told, also have triple-negative breast cancer. Folks with different histories winding up with a BRCA1 mutation and triple-negative breast cancer. We are one.
all the best,