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American Civil Liberties Union and the Public Patent Foundation at
Benjamin N. Cardozo School of Law (PUBPAT) filed a lawsuit today
charging that patents on two human genes associated with breast and
ovarian cancer stifle research that could lead to cures and limit
women's options regarding their medical care. Mutations along the
genes, known as BRCA1 and BRCA2, are responsible for most cases of
hereditary breast and ovarian cancers. The lawsuit argues that the
patents on these genes are unconstitutional and invalid.
"Knowledge about our own bodies and
the ability to make decisions about our health care are some of our
most personal and fundamental rights," said Anthony D. Romero,
Executive Director of the ACLU. "The government should not be granting
private entities control over something as personal and basic to who we
are as our genes. Moreover, granting patents that limit scientific
research, learning and the free flow of information violates the First
Today's lawsuit was filed in U.S.
District Court for the Southern District of New York on behalf of
breast cancer and women's health groups, individual women and
scientific associations representing approximately 150,000 researchers,
pathologists and laboratory professionals against the U.S. Patent and
Trademark Office (PTO), as well as Myriad Genetics and the University
of Utah Research Foundation, which hold the patents on the BRCA genes.
It is the first to apply the First Amendment to a gene patent challenge.
The patents granted to Myriad give
the company the exclusive right to perform diagnostic tests on the
BRCA1 and BRCA2 genes and to prevent any researcher from even looking
at the genes without first getting permission from Myriad. According to
the lawsuit, such monopolistic control over these genes hampers
clinical diagnosis and serves as a disincentive for research because
Myriad not only has the right to enforce its patents against other
entities but also has the rights to future mutations discovered on the
BRCA2 gene. The gene patents are also illegal under patent law because
genes are "products of nature."
"Patents are meant to protect
inventions, not things that exist in nature like genes in the human
body," said Chris Hansen, a staff attorney with the ACLU. "Genes
isolated from the human body are no more patentable than gold extracted
from a mountain."
Many women with a history of breast
and ovarian cancer in their families opt to undergo genetic testing to
determine if they have the mutations on their BRCA genes that put them
at increased risk for these diseases. This information is critical in
helping these women decide on a plan of treatment or prevention,
including increased surveillance or preventive mastectomies or ovary
removal. However, the fact that Myriad can exclude others from
providing this testing has several negative consequences for patients:
many women cannot afford the more than $3,000 Myriad charges for the
test; patients cannot get second opinions on their test results; and
patients whose tests come back with inconclusive results do not have
the option to seek additional testing elsewhere.
"Women whose doctors recommend
genetic testing should be able to find out whether they have the gene
mutations linked to breast and ovarian cancer so that they are able to
make choices that could save their lives, and these patents interfere
with their ability to do so," said Lenora Lapidus, Director of the ACLU
Women's Rights Project.
"The patents on the BRCA genes block
women's access to medical information necessary for making vital health
care decisions, impeding their control over their own bodies," said
Sandra Park, staff attorney with the ACLU Women's Rights Project.
Because the ACLU's lawsuit
challenges the whole notion of gene patenting, it could have far
reaching effects beyond the patents on the BRCA genes. Approximately 20
percent of all human genes are patented, including genes associated
with Alzheimer's disease, muscular dystrophy, colon cancer, asthma and
many other illnesses.
"Scientific research and testing
have been delayed, limited or even shut down as a result of gene
patents, stifling the development of new diagnostics and treatments,"
said Tania Simoncelli, ACLU science advisor. "The government should be
encouraging scientific innovation, not hindering it."
"Patenting human genes is counter to
common sense, patent law and the Constitution," said Daniel B.
Ravicher, Executive Director of PUBPAT and co-counsel in the lawsuit.
"Genes are identified, not invented, and patenting genetic sequences is
like patenting blood, air or e=mc2."
If Myriad's BRCA genes patents were
invalidated, the clinicians, pathologists and researchers represented
by the ACLU would be able to engage freely in research, testing and
clinical practice involving the BRCA1 and BRCA2 genes, and the patients
would be able to obtain second opinions on test results and have access
to genetic testing services from multiple, and perhaps more affordable,
In addition to several individual women patients, plaintiffs in the case include:
* Association for Molecular Pathology
* American College of Medical Genetics
* American Society for Clinical Pathology
* College of American Pathologists
* Haig Kazazian, MD, Professor in the Department of Genetics at the University of Pennsylvania School of Medicine
* Arupa Ganguly, PhD, Associate Professor in the Department of Genetics at the Hospital of the University of Pennsylvania
* Wendy Chung, MD, PhD, Director of Clinical Genetics at Columbia University
Harry Ostrer, MD, Professor of Pediatrics, Pathology and Medicine and
Director of the Human Genetics Program at New York University School of
David Ledbetter, PhD, Professor of Human Genetics and Director of the
Division of Medical Genetics at the Emory University School of Medicine
* Stephen Warren, PhD, William
Patterson Timmie Professor of Human Genetics and Chair of the
Department of Human Genetics at Emory University
* Ellen Matloff, M.S., genetic counselor
* Elsa Reich, M.S., Professor in the Department of Pediatrics (Human Genetics Program) at New York University
* Breast Cancer Action
* Boston Women's Health Book Collective (Our Bodies Ourselves)
Attorneys on the case, Association for Molecular Pathology, et al. v. U.S. Patent and Trademark Office, et al.,
include Hansen and Aden Fine of the ACLU First Amendment Working Group;
Lapidus and Park of the ACLU Women's Rights Project; and Ravicher of
PUBPAT. Simoncelli, the ACLU's science advisor, provides expert
guidance on the case.
Plaintiff and supporter statements and a copy of the complaint can be found online at: www.aclu.org/brca
The American Civil Liberties Union was founded in 1920 and is our nation's guardian of liberty. The ACLU works in the courts, legislatures and communities to defend and preserve the individual rights and liberties guaranteed to all people in this country by the Constitution and laws of the United States.(212) 549-2666
"This is an absolute scandal," said one lawmaker. "It is like having a tobacco multinational overseeing the internal work of the World Health Organization."
One of the world's largest fossil fuel corporations has been able to read emails to and from the United Nations climate summit office and was given advice on how to respond to a media inquiry, The Guardianreported Wednesday.
Sultan Ahmed al-Jaber, the CEO of the United Arab Emirates' state-owned Abu Dhabi National Oil Company (ADNOC), is also president-designate of COP28, set to be hosted this fall by the UAE.
"This is an absolute scandal," said Manon Aubry, a European Union lawmaker from France. "An oil and gas company has found its way to the core of the organization in charge of coordinating the phasing out of oil and gas. It is like having a tobacco multinational overseeing the internal work of the World Health Organization."
Aubrey, who co-led a recent letter in which 133 members of the United States Congress and the European Parliament called for al-Jaber to be replaced as chair of the U.N.'s upcoming annual climate conference, added: "The COP28 office has lost all credibility. If we care more about preventing a climate disaster than protecting the profits and influence of fossil fuel companies, we need to react now."
According to The Guardian: "The COP28 office had claimed its email system was 'standalone' and 'separate' from that of ADNOC. But expert technical analysis showed the office shared email servers with ADNOC. After The Guardian's inquiries, the COP28 office switched to a different server on Monday."
"If we care more about preventing a climate disaster than protecting the profits and influence of fossil fuel companies, we need to react now."
Bas Eickhout, a Dutch member of the European Parliament, called the newspaper's findings "explosive."
Eickhout, vice chair of the E.U.'s environment committee, said that "the [UAE presidency of COP28] is a merger of the economic interests of a fossil country with a fundamental transition agenda that should be away from this fossil industry—that will not go well, and [these revelations] already show that it's not going well."
Pascoe Sabido, a researcher at Corporate Europe Observatory and co-coordinator of Kick Big Polluters Out, noted that the UAE's selection of al-Jaber as COP28 leader in January was "a huge blow to the credibility" of the United Nations Framework Convention on Climate Change (UNFCCC).
"It's completely inappropriate that an oil corporation was consulted and it exposes just how influential it has been in shaping what gets presented to the outside world," said Sabido. "Until world governments accept that fossil fuels need to be left in the ground and their lobbyists are no longer allowed to write the rules of climate action, this will keep happening."
Last year's COP27 gathering was overrun by fossil fuel lobbyists. Like the 26 U.N. climate summits that preceded it, the meeting ended with no binding commitment to phase out the extraction and combustion of coal, oil, and gas, even as evidence mounts that the failure to do so is exacerbating deadly planetary heating.
\u201cOur 'leaders' are not even bothering to keep up pretences. They have handed over the climate crisis agenda, plus all its internal comms, to the oil barons. And public opinion averts its gaze... https://t.co/i595pW0J3O\u201d— Yanis Varoufakis (@Yanis Varoufakis) 1686141626
Soon after the UAE picked al-Jaber to oversee COP28, Kick Big Polluters Out, a global coalition of more than 450 organizations led by Corporate Europe Observatory and Corporate Accountability, warned in a letter to U.N. Secretary-General António Guterres and UNFCCC executive secretary Simon Stiell that this year's climate conference is also destined to end in failure unless action is taken to crack down on the fossil fuel industry's corruption of international negotiations.
That marked the beginning of an ongoing effort to oust al-Jaber from the COP28 presidency and to eliminate fossil fuel industry interference in climate talks more broadly. On Wednesday morning, Kick Polluters Out protested Big Oil's obstruction of progress at the U.N.'s Bonn Climate Change Conference—a crucial precursor to COP28 currently being held in Germany.
The campaign to remove al-Jaber from his COP28 leadership position has gained steam since it was revealed that ADNOC, fresh off of a major profit surge in 2022, plans to expand its drilling operations in 2023 and beyond.
Despite years of warnings from the Intergovernmental Panel on Climate Change and the International Energy Agency that exploiting new oil and gas fields is incompatible with averting the climate emergency's most catastrophic impacts, ADNOC is one of several fossil fuel firms moving to ramp up dirty energy production in the coming years.
Notably, U.S. President Joe Biden's top climate diplomat, John Kerry, has faced criticism for supporting al-Jaber. More than two dozen progressive members of Congress have implored Kerry to advocate for the appointment of a new COP28 president who doesn't have connections to the industry most responsible for fueling the climate crisis.
"This violence is unacceptable and will not be tolerated in California," said one California lawmaker. "We stand in strong support of our LGBTQ+ community. Diversity and inclusion is our strength, and our schools WILL remain welcoming to all."
Far-right fascist groups and homophobic parents instigated violent clashes outside a local school committee meeting in the town of Glendale, California on Tuesday evening which resulted in defenders of the district recognizing June as Pride Month being punched, kicked, pepper-sprayed, and thrown about as police failed to maintain a peaceful situation.
While the Glendale Unified School District board met inside to hear from community members and parents prior to a vote, the overflow crowd that gathered became increasingly confrontational.
Footage taken from above the protest showed the moment when protesters broke a police line and the fighting between the opposing factions ensued:
\u201cAnti-LGBT protestors attack Pro-LGBT demonstrators outside of a Glendale, CA schoolboard meeting.\n\nThe schoolboard is voting on recognizing June as Pride month.\u201d— Brennan Murphy (@Brennan Murphy) 1686100986
Local reporters estimated that 500 people—which included local parents opposed to recognizing the dignity of LGBTQ students as well as others identified as "traveling fascists" and outside agitators without students in the district, like the far-right Proud Boys and other fascist groups—had gathered outside the meeting.
A large group of parents and others who gathered to approve of the Pride recognition vote and support the LGBTQ+ community in Glendale were also in attendance, carrying signs that said "Dads Against Proud Boys" and "Stop Threatening Educators."
\u201cMultiple anti-LGBTQ protestors push against police officers, eventually some push past police and fight with LGBTQ.\n\nAn LGBTQ supporter who is tackled and beaten on the ground by protestors ends up arrested by Glendale police.\u201d— Sergio Olmos (@Sergio Olmos) 1686100997
In a statement, the police said, "While most of the protest was peaceful, a small group of individuals engaged in behavior deemed unsafe and a risk to public safety."
According to local ABC affiliate Channel 7 Eyewitness News:
The school board was set to adopt a resolution recognizing Pride Month, which has been done for the last four years. However, a shelter-in-place order disrupted the meeting as a brawl happened outside.
Board members later unanimously adopted the resolution to declare June as Pride Month.
Many in the crowd opposed to LGBTQ+ rights and recognition wore t-shirts that read: "Leave Our Kids Alone."
The Republican Party and other far-right political actors have increasingly targeted local public schools in their effort to gin up opposition to trans youth and promote a culture war that seeks to equate common-sense love and acceptance of LGTBQ+ children and adults with some kind of leftist "indoctrination" that should be opposed.
\u201cThis violence is unacceptable and will not be tolerated in California. We stand in strong support of our LGBTQ+ community. Diversity and inclusion is our strength, and our schools WILL remain welcoming to all.https://t.co/hRsD2dzDAT\u201d— Buffy Wicks (@Buffy Wicks) 1686114833
One parent of a queer middle school student in the district who was at Tuesday's meeting told the Los Angeles Times that her child had faced discrimination growing up.
The woman said she was grateful for the commitment by the GUSD board in protecting LGBTQ+ acceptance. "I've never spoken before," she said, "but as an actual parent, I felt that I had to be here because a lot of the opposing people don't believe that I exist."
"These health insurance CEOs have been so successful not because they have improved the health and well-being of Americans, but rather because they have sustained financial returns for Wall Street investors."
The United States' healthcare system is the worst in the developed world, delivering the highest death rates for treatable conditions, the highest infant and maternal mortality rates, and the lowest life expectancy at birth.
But a system that is failing patients, often in catastrophic ways, has been a massive boon for the executives who run the few private companies that dominate the nation's healthcare sector.
Last year, the CEOs of CVS Health, UnitedHealth Group, Cigna, Elevance Health, Centene, Humana, and Molina Healthcare—the top seven publicly traded health insurance giants in the U.S.—brought in a combined $335 million in compensation, STAT recently reported.
The outlet emphasized that "high-flying stock prices again fueled a vast majority of the gains," which mark a new record. Joseph Zubretsky, the CEO of Molina Healthcare—a company whose revenue comes entirely from taxpayer-funded programs such as Medicaid—took home a staggering $181 million in 2022.
As former Cigna executive Wendell Potter noted Tuesday, "these health insurance CEOs have been so successful not because they have improved the health and well-being of Americans, but rather because they have sustained financial returns for Wall Street investors."
"Not much has changed in how insurer CEOs are compensated since I left Cigna in 2008. Except they're making way more," wrote Potter, who is now the executive director of the Center for Health and Democracy.
In a new analysis of the latest CEO pay figures, Potter observed that "had it not been for their companies' share buybacks"—which help boost the price of their stock by reducing the number of shares outstanding—"they wouldn't have banked nearly that much money."
"My analysis of how much the companies have used our premiums and tax dollars to buy back shares of their own stock showed that combined they spent $141 billion on share repurchases between 2007 and 2022," Potter wrote. "Keep in mind that that is $141 billion that otherwise could have been used to reduce our premiums and deductibles–and keep an untold number of American families out of bankruptcy and away from GoFundMe–but was used instead to increase the wealth of their shareholders and top executives."
\u201c(1/6) LATEST: CEOs from the 7 big health insurance companies pulled in $335 million in just 2022 alone.\n\nHow did they do it?\n\nBy imposing high out-out-pockets requirements and premiums; stock share repurchases; and by gaming the Medicare and drug supply chain.\u201d— Wendell Potter (@Wendell Potter) 1686067073
Potter argued that the CEOs' exorbitant pay packages are "especially alarming when you consider that they are getting more and more of it from us as taxpayers" as tens of millions of Americans go without insurance, struggle to afford their prescription medicines, and drown in medical debt.
In an analysis released earlier this year, Potter estimated that government programs are the source of around 90% of the health plan revenues of Molina, Humana, and Centene.
Centene CEO Sarah London brought in more than $13 million in total compensation last year, and Humana chief Bruce Broussard took home more than $17 million. Both companies are major providers of Medicare Advantage—a privately run, publicly funded, and fraud-ridden program that is a growing source of insurance company revenues.
"Keep all of this in mind the next time you go to the pharmacy counter and are told that even with insurance you'll have to pay a king's ransom for your meds because your insurer—through its pharmacy benefit manager (PBM)—has once again jacked up your out-of-pocket requirement," Potter wrote. "Or the next time you notice how much has been deducted from your paycheck for your health insurance–and Uncle Sam."
Fresh outrage over the pay of insurance industry CEOs, which surged during the coronavirus pandemic as millions lost health coverage and got sick, comes amid a renewed Medicare for All push in Congress.
Last month, Sen. Bernie Sanders (I-Vt.), Rep. Pramila Jayapal (D-Wash.), and others reintroduced Medicare for All legislation in both chambers, with more co-sponsors than ever before—though the bill has no chance of passing the divided Congress.
The legislation would virtually eliminate private health insurance and provide comprehensive care to all for free at the point of service, a transformative change that would likely save tens of thousands of lives and hundreds of billions of dollars each year.
"In America, your health and your longevity should not be dependent on your bank account or your stock portfolio," said Sanders. "After all the lives that we lost to this terrible pandemic, it is clearer now, perhaps more than it has ever been before, that we must act to end the international embarrassment of the United States being the only major country on earth to not guarantee healthcare to all."