Popularizing Cancer as a Topic of Public Discourse
Chief Medical Officer, Oncology Resource Networks, and Editor-In-Chief, Value-Based Cancer Care
With the Third Annual Conference of the Association for Value-Based Cancer Care (AVBCC) held in May in Florida and the 2013 Annual Meeting of the American Society of Clinical Oncology concluding in June in Chicago, it is tempting to consider which of the many presentations, abstracts, and reports were most impactful or will have the greatest influence on how oncologists think about, diagnose, and treat patients with cancer.
Nevertheless, cancer as a public topic has made its way into the mainstream media in an unprecedented fashion. On a nearly daily basis, there is a news report or an editorial by a major news organization related to cancer. Furthermore, celebrities have increasingly become part of this discourse and dialogue. Lance Armstrong created a franchise popularizing his bout with testicular cancer. More recently, Angelina Jolie made headlines by describing her personal story and her choice to undergo a prophylactic bilateral mastectomy after learning that she had an inherited mutation in the BRCA1 gene that increased her risk for developing breast and ovarian cancers.
Although the impact that a celebrity has on any field—politics, marketing, or the media—cannot be underestimated, the impact of celebrities on the advance of cancer diagnosis and treatment, and, most important, on fundraising, has been dramatic in the past several decades. It has also helped to raise billions of dollars for organizations such as Stand Up To Cancer, LiveStrong, and Susan G. Komen.
However, it is a presentation by Congresswoman Debbie Wasserman Schultz at this year’s AVBCC Annual Conference that may have a great impact in oncology as molecular diagnostics and the ability to utilize our molecular understanding of cancer in treating patients increasingly play important roles in the way oncologists manage cancer.
Ms Wasserman Schultz’s personal story is similar to that of Angelina Jolie, but it was not nearly as popularized in the mainstream media. And yet, although the congresswoman’s story may be similar, the implications for genetic testing and the future of genetic testing are potentially profound. At age 41, Ms Wasserman Schultz was diagnosed with breast cancer: based on her family history and other factors, it was recommended that she be tested for the BRCA1 and BRCA2 mutations. The tests did indeed show that Ms Wasserman Schultz had a BRCA mutation, and it was recommended that she undergo prophylactic bilateral mastectomies and a bilateral oophorectomy. Her immediate response was to request a second opinion, given the potential life-changing impact of these recommendations. She further appreciated just how impactful these recommendations could have been had she been significantly younger, unmarried, and without children.
At her talk at the AVBCC Annual Conference, Ms Wasserman Schultz described that she had been told that the BRCA1 and BRCA2 tests were 100% reliable. Recognizing that mistakes can be made in any test, she persisted in her request for a second opinion, an opinion that could not be provided, because Myriad Genetics, Inc, held a patent on the test for mutations in the BRCA1 and BRCA2 genes, a patent that has not yet been licensed.
In November 2012, the Supreme Court agreed to review an appeal filed by the American Civil Liberties Union and the Public Patent Foundation on behalf of the Association for Molecular Pathology and other organizations to determine whether patents for “products of nature” are unconstitutional by undermining the First Amendment and delimiting the free exchange of ideas related to the human body.
Although Myriad’s patents on BRCA1 and BRCA2 are set to expire in several years, the ruling by the Supreme Court, which is expected in late June, will have far-reaching implications for Myriad Genetics, as well as for many other companies, researchers, patients with cancer, and the general populous, especially as we move into the age of next-generation sequencing and precision medicine.
The ultimate questions are whether a gene can be patented, and if the evidence is sufficient to support a patent for the test that Myriad has developed.
The current approach to our understanding, diagnosis, and treatment of cancer will dramatically evolve in the next decade through the advent of a better understanding of gene regulation and the molecular heterogeneity of cancer cells, and a growing number of new tools that will allow us to predict one’s risk for cancer, better diagnose cancer, and better assess the prognosis of patients with cancer, as well as to predict the treatments that are most appropriate and effective. This evolution will significantly impact the cost of diagnosis and treatment while simultaneously altering outcomes.
It is, however, Angelina Jolie’s willingness to speak up, and the public service of Congresswoman Debbie Wasserman Schultz and her contribution to this discourse, that could potentially have an even more dramatic impact on decisions that contribute to popularizing a personalized and precise approach to the diagnosis and treatment of cancer.