There has been a major firestorm the last 48 hours regarding the overtly political decision of the Susan G. Komen Foundation to stop providing funding to Planned Parenthood. The reason, they claim, is that Planned Parenthood is under investigation in Congress — a probe launched by a conservative Republican who was urged to act by anti-abortion groups. Of course, some great journalism by Jeremy Goldberg of The Atlantic, highlighted by our own TomP, says that Komen changed their internal policy of not funding organizations under investigation by Congress after the investigation was initiated.
In other words, according to above piece, the Komen Foundation saw an opportunity to stop giving funds to Planned Parenthood based on the Congressional investigation and amended their internal policy accordingly. The cart before the horse, indeed.
Perhaps surprisingly for the Komen Foundation, the backlash against the organization has been stunning - and not only from political activists like ourselves. The responses have gone viral, and hopefully they will start to "pull back the pink curtain", as Daily Kos and activist Betty Pinson so appropriately stated. In her remarkable diary, "Behind the Pink Curtain - Komen's Political Agenda", Betty documented a truly sobering history of the Komen Foundation. for over a decade, they have been working behind the scenes to block several pieces of legislature that would actually help women in the fight against breast and cervical cancer.
Most shockingly, lobbyists for Komen actually argued "that treatment for uninsured breast cancer patients should be funded through private donations," like (of course...) the pink ribbon race. For Komen, it makes perfect cents (pun definitely intended). When you are a charity that, as of 2009-2010, spends only 24% of your funding on research (warning - PDF), the more pink ribbon races you have, the more pink ribbons and Kitchen Aid mixers and other overtly commercialized products you have, the more money for your CEO's $500K salary. For the Komen's corporate sponsors, Pink is the new Green.
However, perhaps adding another level of shock to you all, there is another dark side in regard to the commercialization of breast cancer that has gone unreported. Follow me below the fold to get the story.
Many of you have likely at least heard the term "BRCA" (pronounced "bra-ca") before. You may even know that it's the nomenclature for the gene that when mutated is highly linked to incidents of breast cancer. But what you likely are not aware of is that the BRCA gene has been the subject of a legal battle for the last 17 years, and all because of one company - Myriad Genetics.
First, a history lesson behind the discovery of the BRCA1 / BRCA2 mutations that lead to breast cancer (There are two forms of BRCA that are both implicated in breast cancer, among others). BRCA1 was first associated via linkage analysis with high incidences of breast cancer in 1991 by scientists at the University of California - Berkeley. As a reference, this was a time when genetic sequencing - taken for granted today - was extremely difficult, time consuming, and expensive. A year earlier in 1990, a separate group of scientists lead by geneticist Dr. Mark Skolnick, who had done early linkage studies on Mormons, founded Myriad Genetics. Their mission was to use Dr. Skolnick's expertise on linkage to identify and clone genes for eventual commercial purposes. Myriad Genetics first focused on the newly-implicated BRCA1 gene, and in 1994 had successfully cloned the gene, in the process creating an isolation and detection method - essentially, an early form of genetic screening.
But rather than share this technique with the research and medical community, Myriad Genetics saw a very lucrative opportunity to profit off of their cloned BRCA1 gene. The company filed for a patent in 1994, and was granted one in 1997.
Meanwhile, work from Dr. Michael Stratton and colleagues had published (access required) work on the discovery of a second breast cancer susceptibility gene, appropriately named BRCA2. Myriad Genetics sequenced this new gene and filed for a patent in 1995; it was granted in 1998.
Since the initial discovery of the BRCA1 / BRCA2 genes, much additional research has been conducted demonstrating their significant contribution to breast cancer incidents. For women harboring mutations in either gene, the prognosis is very poor. For a 25 year old woman, survival to age 70 is only 53% with a mutant copy of BRCA1, and only 71% with a mutant copy of BRCA2, compared to 84% for unaffected women. Of women harboring a BRCA1 or BRCA2 mutation, 77/100 and 56/100 will die from breast or ovarian cancer, respectively. This is compared to only 11/100 for unaffected women.
The research has been done, and the results are clear - if you are a woman who has either a mutant copy of BRCA1 or BRCA2, your likelihood of getting breast cancer is extremely high, and if untreated, you will likely die.
Thankfully, with aggressive preventative screenings and other intensive medical care, women with a mutant copy of BRCA1 or BRCA2 can extend their lifespan.
Of course, the critical piece of information is knowing whether you have a mutation in BRCA1 or BRCA2 in the first place. This is where Myriad Genetics and their patents come into play. If you have had breast cancer yourself or have a direct relative (parent/grandparent) who has had breast cancer, you likely already know what I'm going to say. You see, Myriad Genetic's patents don't just cover the isolation and sequencing technique of the BRCA1 and BRCA2 gene - they are patents of the genes themselves. Which means that any screening test that sequences and checks for mutations in your copies of BRCA1 and BRCA2 owes royalties to Myriad Genetics. And according to cancer.gov, that can cost anywhere between several hundred to thousand dollars for each test (and two genes means two tests). And as expected in the war on women from health insurance companies, your test may not be covered. Don't take my word for it, it's information provided in the same cancer.gov link I provided just above.
So let's recap what we have here and the potential consequences for women's health. You have a disease which is widely known as the second biggest killer of women (after heart disease). You have two known genes in BRCA1 and BRCA2 that if mutated are a known death sentence for the affected patient. And you have a company in Myriad Genetics that continues to claim royalties in the thousands of dollars for every single screening test performed, even though in the year 2012 it costs maybe $100 at most to screen for both genes. In fact, it's probably WAY less than $100, considering Life Technologies just released a machine that can sequence the entire human genome in one day for just $1000. 30,000 genes for $1000. If I haven't convinced you that a cost of thousands of dollars for sequencing two genes isn't extortion, then you have no hope.
A consistent friend of progressive causes agreed. The ACLU filed suit in 2009 against Myriad Genetics for its patents of the BRCA1 and BRCA2 genes, arguing that biological components in their natural form should not be patentable. From ACLU Executive Director Anthony D. Romero:
"Knowledge about our own bodies and the ability to make decisions about our health care are some of our most personal and fundamental rights. The government should not be granting private entities control over something as personal and basic to who we are as our genes."
The court agreed in the ACLU's favor in a 2010 decision. Federal Judge Robert W. Sweet stated:
"DNA's existence in an 'isolated' form alters neither this fundamental quality of DNA as it exists in the body nor the information it encodes. Therefore, the patents at issue directed to 'isolated DNA' containing sequences found in nature are unsustainable as a matter of law and are deemed unpatentable under 35 U.S.C. §101."
Of course, Myriad Genetics appealed, and unfortunately won in a July 29, 2011 ruling from the Federal Circuit court.
The case was heard by federal judge Randall R. Rader.
The ACLU is currently appealing the Federal Circuit court's decision to the US Supreme Court on December 7, 2011.
Update - The below information is correct about Judge Rader, so I don't want to strikethrough the text, but it is non-applicable to this diary anymore thanks to the correction provided by user Villanova Rhodes.
It may also not surprise you that Judge Rader served as a legislative assistant to the odious Rep. Virginia Smith and was first appointed to a federal court position by President Reagan. Here is a prime example of extending corporate ownership over our bodies, a theme that was brought to national attention two years ago in the book "The Immortal Life of Henrietta Lacks" (which, if you haven't read, you totally should).
So as of now, Myriad Genetics' patents for BRCA1 and BRCA2 are valid and costing hundreds of thousands of women millions of dollars in unnecessary medical costs, not to mention setting a horrifying trend of having something as innate to life - our genes - be patentable. I don't have much faith in the Supreme Court to rule on the side of women, science, and medicine, but one can hope.
I hope this diary has provided you with some knowledge about the oft unmentioned side of the commercialization of breast cancer (and our bodies in general). I figure no better time then the ongoing (and rightful) firestorm against the Susan G. Komen Foundation to help get this information more widely available.
And as a final request, if you really want to help cure breast cancer (or all cancers, for that matter), instead of buying pink stuff, you should 1) donate to Planned Parenthood, and most importantly, 2) donate to and advocate for Congresspeople who will fully fund the NIH.
Update - Feb 3, 2012 - 3:02PM - Thanks to a comment from user Villanova Rhodes; my information that Judge Rader presided over the ACLU's victory being overturned is wrong. I had 15 tabs open while writing this (to have all my sources set), and I saw his name in there somewhere, but after checking out the actual court ruling, I see that I published wrong information. Sorry for that - I'll do a better job cross-checking everything before publishing next time.