"I called my internist, because she's a good friend," a woman recently told me. "To help me make a decision" about whether to undergo a prophylactic mastectomy because of the presence of a breast cancer mutation. "But she just felt she really couldn't. A lot of information comes at you fast and furious." This woman's physician felt the issues were too complex. This patient thus struggled alone, unsure what to do. She still hasn't decided, and remains at risk.
Angelina Jolie’s openness about her decision to undergo mastectomies because of the BRCA1 mutation can help inspire countless women to face this difficult decision. Yet several obstacles exist that deserve attention -- concerning doctors, and costs of testing.
Many doctors are uncomfortable talking with patients about the possibilities of removing breasts and ovaries. Given the difficulty of the choice of whether to remove one's breasts and ovaries when one is otherwise healthy, other doctors tell patients, "I can't tell you what to do." Patients are then left alone. Other physicians end up sounding insensitive. Another woman recently told me that when the possibility of ovarian removal was discussed, her doctor said simply, "We'll just scoop them out."
As the amount of genetic testing increases, doctors -- and patients and their families -- need more training about these complex and sensitive topics, and about the intricacies of genetics more generally. The amount of genetic testing is rapidly rising, but physicians have major gaps in their understanding. About a third of doctors have ever ordered a genetic test.
Most patients do not know that their genes reside in every cell of their body. Public education about genetics needs to increase as well.
Other critical barriers persist, too. As Ms. Jolie states in her New York Times Op-Ed piece, “The costs of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remain an obstacle for many women.”
This price is prohibitively high for one reason: Myriad Genetics, Inc. has patented the genes.
Such patents of genes that are in all of our bodies raises moral concerns. Indeed, these very patents have recently been challenged in the Supreme Court by the ACLU.
Patents must show novelty and usefulness, and can be “laws of nature”. Myriad argues that it has extracted and isolated the gene sequence from the coils of human DNA, and that they are thus patenting something that is markedly different from what is found in nature.
Yet the key information in that sequence is identical to that in human chromosomes.
The Supreme Court has yet to rule. Yet even if they do strike down Myriad’s claim, thousands of other genes remain patented as well, and the appropriateness of those protections varies widely.
Patent protection can spur companies to devote resources to seek important discoveries. But the laws that grant such exclusive use - and profit – were developed long before DNA was decoded a mere 60 years ago. These laws were intended to cover clear inventions – new types of light bulbs, and computer and cell phone hardware – not parts of human beings.
This case’s fate remains unclear, but the massive media attention of Ms. Jolie’s announcement has ignored this fundamental issue of justice and health care – why the costs of testing are so high, whether anything can be done to reduce the cost, to enable countless other women to be tested, and if so what.
Public health needs have trumped patent protections in the case of HIV drugs. Pharmaceutical companies, under intense pressure from patients’ groups, agreed to let genetic drugs be used in the developing world.
Once again, patent protections impede public health.
Some -- but not all -- insurance companies cover the costs of this test. Insurers who do pay for it do not do so for all women. These companies vary in the criteria they use to determine such eligibility.
For instance, the test does not make sense for women with no evidence, or family history of breast or ovarian cancer. But companies may vary in whether they think one relative with breast cancer is sufficient to warrant testing. Companies may decide based on economic, not merely medical factors.
President Obama's Affordable Care Act will hopefully cover the cost for many women, enabling many women to test who are not now able to do so. But the Department of Health and Human Services has apparently not yet decided which women will be tested.
Eliminating the patent, and the huge profits Myriad reaps, would thus help make the test far more affordable and accessible.
The attention given to Ms. Jolie's decision should inspire us -- not only to face difficult medical choices, but to reduce the obstacles faced by other women, by increasing doctor and patient understanding of genetics, and to discuss and try more vigorously to develop a fairer system of gene patents. In these ways, her medical success will not be limited to a small percentage of women, but can be shared by millions of others as well.