Patent pendingPosted: May 15, 2013 Filed under: breast cancer | Tags: BRACAnalysis, BRCA1, BRCA2, breast cancer in young women, gene patents, genetic risks and breast cancer, genetic sequencing, Myriad Genetics, Oncotype DX, Supreme Court 10 Comments
I got a phone call from Myriad Genetics the other day, in the middle of the day. I was hard at work and not pleased about being disturbed. I looked at the caller ID to ensure it wasn’t one of my kids’ schools calling to report a sudden onset of vomiting, saw that it was neither the elementary nor the middle school, and chose not to answer. I got back to work — in this case, carefully wrapping and packing my excessive collection of martini glasses, even though I’m not a martini drinker and have never caught on to the trendy flavored martinis. Why do I have all these glasses? When was the last time anyone in this house drank anything besides beer from a bottle or champagne from a flute? If I decide to ditch the martini glasses, do I still need to wrap each one before donating them? Why is this one glass so much bigger than the rest? Where did it come from, and why do I only have one this size?
See why I don’t have time to answer a call from Myriad Genetics?
Truth be told, I figured in the millisecond of conscious thought I devoted to that readout on the caller ID that someone from Myriad Genetics must be calling to collect on a medical bill from months ago. At this point in my cancer “journey,” I have had so many tests and receive so many bills from different labs, physician groups, and hospital management companies, I would need a manager to keep them all straight. In the early days of this “journey,” my health insurance company provided a patient advocate, who acted as my manager. When I received a bill I didn’t recognize, I could call her and she would do the leg work — both with my insurance company and with the vendor billing me — to determine what I really owed and why it wasn’t fully covered. I have a 3-ring binder that is stuffed full, I mean completely full, of copies of medical bills. That binder tells an evolutionary story about my cancer “journey” from the first days of diagnosis in which I set up carefully labeled dividers to contain each category of my cancer: notes from doctors’ appointments, research, copies of test results, and a motley assortment of insurance clobber. In the days of feeling good, I would carefully note at the top of a medical bill the details of that particular transaction: the date I paid it, or the contents of the conversation with the patient advocate. In the dark days of being sick, sick, sick from the post-mastectomy infection, the correspondence is shoved helter-skelter into the notebook, crumpled and noteless. These days, doctors’ appointments and test results are few and far between, which is a good thing since the binder is so full. There is no room in the inn. My choices are continue stuffing stuff into the overly full binder, or start a new one. I don’t like either option.
Back to Myriad Genetics.
I didn’t give the phone call another thought; my thoughts were quite consumed with the martini glass collection, and my brain is rather full with the ginormous list of tasks required when moving house. I didn’t think about Myriad Genetics or the genome testing involved in the cancer “journey” until the story broke about Angelina Jolie’s preventative mastectomy. In her eloquent New York Times article, Jolie mentions the costliness of the genome testing she underwent that detected her risk factor (in her case, an 87 percent chance) of developing breast cancer and that the cost is a barrier for many women. I remember taking the Oncotype test to expose the exact characteristics of my cancer. My breast surgeon ordered the test so that we could better determine exactly what we were dealing with and decide on the best treatment, yet my insurance company denied payment because they don’t cover genetic testing. I don’t recall the exact cost of the Oncotype, and I’ve already packed my overstuffed binder, but it was definitely several thousand dollars. However, the cost of the test was a pittance compared to the cost of the chemo that two oncologists recommended before I consulted a third, Oncotype results in hand, who said chemo wasn’t necessary and in fact, would cause more harm than good. That nasty post-mastectomy infection was the final nail in the proposed chemo’s coffin; the Oncotype cost some stacks but it saved my insurance company even more.
Which brings us back to Angelina Jolie and her subtle yet effective reference to the cost of such tests and the disparity between who can and cannot afford such tests. I also had the BRCA test that Jolie subtly yet effectively mentions, and remember thinking, wow — $3,000 for swishing Scope around in my mouth then spitting the minty saliva into a collection cup? And yet that $3,000 test determined that I do not carry the gene that predisposes me — and my daughter — to breast and ovarian cancers. Jolie’s BRCA test revealed that she does carry the gene, hence her preventative mastectomy.
Why does any of this matter? Well, beyond the age-old debate about the haves and the have-nots in health care, of course. That’s enough of a reason. Equally important,though, is the fact that Myriad Genetics has patented the BRCA1 and BRCA2 genes. They own the genes, essentially, which gives them a monopoly on testing. Therein lies the problem. With a monopoly, other scientists and other companies can’t get in on the gene testing, which shuts the door on any possibility of discovering better and less-expensive testing methods. While Myriad Genetics needs to make a buck, just like every other company, the stakes are high when we’re talking about shutting out many customers who may not know about their genetic risk of cancer until it’s too late.
The Los Angeles Times described the situation quite succinctly:
“At issue is whether a human gene sequence can be patented. That’s the broad question. The two specific sequences patented by Myriad — BRCA1 and BRCA2 — are genes that suppress tumors. A small percentage of women have defective copies of those genes, and they are extremely likely to develop a virulent form of breast cancer. They also face a higher-than-average risk of ovarian cancer. Myriad’s patents give it an unusual degree of control over researching and testing for BRCA defects. Only Myriad can legally isolate the BRCA1 and 2 sequences. In the United States, that means only Myriad’s lab can conduct a full sequencing test to check a patient for the innumerable possible mutations of those genes.”
Should Myriad Genetics be allowed to essentially own these genes? That’s up to the Supreme Court to decide. The ruling is expected next month, and the debate will likely be heated before, during, and after. I’ll keep ya posted.
I’ve been following this issue because it seems absurd to me. Your gene sequences determine your physical make-up and are as much a part of who you are as things like eye color, whether you’re left-handed, or shoe size. No one would think of patenting those. It’s one thing to patent a process for identifying a gene sequence. It’s another thing to patent a piece of someone and say, “Hands off, everyone. You can’t go here.” Are they going to patent the appendix and say that no one else can perform an appendectomy?
DB, that’s some of the same thoughts I have regarding pictures of my offspring. I feel like I own the rights to their images as one of their parents. Although I understand the photographer’s right to the image, too. I know, this is a much simpler conundrum, but that’s what crossed my mind when I read your comments.
You left me hanging, Nancy–what happened with the call? Did you call them back? Did they leave a message??
My heart leapt with joy when I read about your binder being packed away while you’re in the move process. That says something, doesn’t it? That was a huge highlight of this post for me! You go, Girl!
Sorry, Amy, didn’t mean to leave ya hanging. Nothing ever happened w the call–they didn’t call back, and I didn’t *69 them. But it served as a catalyst for this rant.
I love the picture you posted– great sign! Here’s an interesting video I came across from the ACLU regarding Myriad and gene testing. It’s called “Who Owns Your Body”: http://www.aclu.org/free-speech-technology-and-liberty/who-owns-your-body
Also, if you haven’t read the book The Immortal Life of Henrietta Lacks, I’d highly recommend it. It’s about the woman whose virulent cancer cells were the HeLa cells still used for most genetic research. Very thought provoking and sobering. People have made millions off her cells, and they have these cells of hers that will live far longer than they should, perhaps infinitely, and have created new mutations, etc. Makes one wonder what happens to all the tissue we had to involuntarily donate. Is it put to good use finding a cure, or is it just making money for a company somewhere and we have no control over what they are doing with it.
Marcie – I think it’s a little of both, companies make gobs of money by finding cures. But I completely agree the ownership and rights issues are troublesome. In general I think our patent system is far stronger than it needs to be to protect the incentive to innovate. Patents are now too often a weapon used to protect market incumbents from innovation. Of course maybe I’m a wacko, I think much regulation of business is similar – that which is intended to protect consumers is often used as an expensive compliance hurdle by big companies to prevent new competition.
I have t read that book but its in my que. I’ll move it to the top of the list. I also wonder about all the tissue we “donate” and it’s never occurred to me to ask about it, so caught up in the hubbub of surgery/biopsy, etc.
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