Angelina Jolie recently announced her decision to have preventive bilateral mastectomies. This decision was made due to her mother’s medical history and her own results from a BRCA test that showed her risk of developing breast and ovarian cancer were high.
The BRCA test that helped her decide costs about $4,000 and can only be performed by one company called Myriad. The company holds an exclusive patent preventing others from researching the gene or developing an alternative test for second opinions.
Jolie’s actions have brought attention to a complex avalanche of issues. Issues that reflect the technology of our time, about what women should do if they were faced with the same decision, and the distance we still have to go in breast cancer prevention and treatment.
Currently Myriad is in court to defend their exclusive rights to testing of the BRCA gene. The patent permits them to have a monopoly for BRCA testing, limiting the options of women seeking answers about their medical care.
Additionally, the patent prevents others from doing further research on the BRCA gene to see how it affects other genes in the body in relation to other diseases.
The first court case began in 2009, and was decided against Myriad, invalidating their patent claims. Then, after rounds with the U.S. Court of Appeals, it was ruled in favor of Myriad, allowing a human gene to be patented, overthrowing the earlier decision. (1)
Now the case is in the Supreme Court. A final decision is expected by summer 2013 to answer this question -- Can genes, which are products of nature, be patented? (2)
This case is thought to be a pivotal one for the future of health care for everyone, as it will decide whether in the future, single genes can be patented.
On the one hand, all companies want and should be compensated for taking the risks to develop tests and treatments for disease. Innovation and motivation comes from this financial reward. We want companies to push themselves and spend the years it takes to produce solutions that can become cures.
On the other hand, we recoil at the idea that a company can own a piece of naturally occurring life. Myriad did not invent the BRCA gene. They invented a way to isolate it and test for mutations in an altered version of our own DNA.
And they are not the only ones who own patents on genes, over 20 percent of discovered genes also have patents on them. The line has been gray on whether non-products can be patented, so the court battles have gone on. (3)
Cost aside, there is the decision of what to do with the knowledge gained from the BRCA test itself if you have one done.
What should a woman do if she tests positive?
Some have immediately had double mastectomies. Jolie is not the first, but others have stated flat out that they cannot afford to have the type of aesthetically pleasing reconstructive surgery that someone who is a movie star or someone with more money can have.
According to Medscape, the cost of a prophylactic mastectomy with reconstruction can cost $100,000 or more, including costs of all surgeon and hospital fees.
One woman in New Jersey told the New York Post that her mother had breast cancer but she is the main breadwinner in her family and does not have the money for special reconstructive surgery like Jolie’s if she was to test positive.
“That’s good for her; she’s got the best health care and she’s got money. She doesn’t have to worry about taking off of work. She doesn’t have to worry about taking care of her family, cooking or cleaning — the things that the normal woman would have to do." (4)
Payment for BRCA testing should be covered by the Affordable Care Act and may also be subsidized by Myriad. “The Affordable Care Act requires that insurance policies after Aug. 1, 2012 cover the entire cost for BRCA testing and genetic counseling for women with a family history, when recommended by a health care provider.” (5)
The Susan Komen Foundation discussed the issue of health care disparities in USAtoday.com, stating that access to medical care still lags for many women in low income groups and low resource areas.
The Affordable Care Act will help, but insurance will not pay all the costs and finding surgeons who accept Medicaid can be difficult. Even regular surveillance (MRIs for those at high risk) can be expensive for those who decide to just step up monitoring.
Whether or not the Supreme Court rules that a company cannot own a piece of our genes, we still have a long way to go in providing care for the prevention and treatment of breast cancer.
Sources:
1. Time line: Association for Molecular Pathology v. Myriad Genetics. ACLU. Org. Retrieved May 26, 2013.
http://www.aclu.org/timelines/association-molecular-pathology-v-myriad-g...
2. Association for Molecular Pathology v. Myriad Genetics. ACLU. Org. Retrieved May 26, 2013.
http://www.aclu.org/free-speech-technology-and-liberty-womens-rights/ass...
3. CAN WE PATENT LIFE? The New Yorker online. Retrieved May 26, 2013.
http://www.newyorker.com/online/blogs/elements/2013/04/myriad-genetics-p...
4. NJ teacher says Angelina Jolie's decision isn't realistic for working women. New York Post. Retrieved May 26, 2013.
http://www.nypost.com/p/news/local/everyday_mom_hit_angelina_jsIWH8MaO1G...
5. BRCA Choices Not Affordable for Many US Women. Medcape Nurses News. Retrieved May 26, 2013.
http://www.medscape.com/viewarticle/804657
6. Disparities in breast cancer treatment: Column. USA Today. Retrieved May 26, 2013.
http://www.usatoday.com/story/opinion/2013/05/25/angelina-jolie-breast-c...
Michele is an R.N. freelance writer with a special interest in woman’s healthcare and quality of care issues. Other articles by Michele are at www.helium.com/users/487540/show_articles
Edited by Jody Smith