NCL and 36 leading patient organizations urge Congress to protect seniors’ access to critical laboratory tests

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September 21, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832

Washington, D.C.— The National Consumers League (NCL) today sent a letter signed by 37 leading advocacy organizations, including groups that represent patients with common and chronic conditions who depend on laboratory testing to diagnose and manage their health, urging Senate and House leaders to protect access to clinical laboratory services by enacting the Saving Access to Laboratory Services Act (SALSA / S. 4449 / H.R. 8188) this year.

“Without urgent congressional action, ongoing Medicare reimbursement cuts could jeopardize access to many clinical laboratory tests used to diagnose, monitor, prevent, and manage diseases for more than 50 million Americans,” said Sally Greenberg, NCL Executive Director. “It is essential that Congress act this year to permanently fix this problem.”

Highlights from the letter are included below:

  • “Without congressional action, Medicare reimbursement cuts – a fourth round scheduled to begin January 1, 2023 – could jeopardize access to many clinical laboratory tests that are used to diagnose, monitor, prevent, and manage common diseases for more than 50 million seniors.”
  • “Clinical diagnostic tests play a critical role in health care and inform 70 percent of medical decisions. For example, in 2020 more than 17 million hemoglobin A1C tests to assess the risk of developing diabetes, 28 million tests to diagnose and monitor heart disease, and 90,000 tests to diagnose leukemia and hereditary breast and colon cancer were provided to Medicare beneficiaries to support their care.”
  • “Between 2017 and 2022, payment for common tests for diseases like diabetes, cancer, and heart disease were cut by 27 percent. The next round of Medicare cuts would slash reimbursement up to another 15 percent for more than 800 laboratory tests, resulting in a staggering 38 percent cut to tests that are widely used to screen and manage many serious diseases. It is essential that Congress protect patients by acting this year to fix the Medicare payment model for clinical diagnostic tests.”
  • “Because of the serious implications for patients who rely on routine as well as advanced diagnostic laboratory services, Congress has acted three times to delay these cuts in recent years, but permanent reform is needed now. Fortunately, the Saving Access to Laboratory Services Actwould update Medicare’s payment system, which would help protect access to clinical laboratory testing, support investment in innovation, and strengthen America’s clinical laboratory infrastructure.”

Groups signing the letter include:

  • A Breath of Hope Lung Foundation
  • Alliance for Aging Research
  • Alpha-1 Foundation
  • American Sexual Health Association
  • AnCan Foundation
  • California Life Sciences
  • California Society of Pathologists
  • Cancer Support Community
  • CancerCare
  • Caregiver Action Network
  • Caregiver Voices United
  • Crohn’s & Colitis Foundation
  • Chronic Disease Coalition
  • Community Liver Alliance
  • Down Syndrome Association Of Orange County
  • FORCE: Facing Our Risk of Cancer Empowered
  • Global Liver Institute
  • GO2 Foundation for Lung Cancer
  • HealthCare Institute of New Jersey (HINJ)
  • Healthcare Leadership Council
  • Heart Valve Voice US
  • HIV + Hepatitis Policy Institute
  • International Foundation for AiArthritis
  • LUNGevity
  • Lupus and Allied Diseases Association, Inc.
  • Lupus Foundation of America
  • Men’s Health Network
  • Minority Health Institute
  • National Consumers League
  • New Jersey Association of Mental Health and Addiction Agencies
  • Ovarian Cancer Research Alliance
  • Patient Empowerment Network
  • RetireSafe
  • The Kidney Foundation of Central PA
  • The National Grange
  • Triage Cancer
  • ZERO – The End of Prostate Cancer

 

To view the full letter, click here.

 

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About the National Consumers League (NCL) 

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.

Support for labor unions on the rise

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By Sally Greenberg, NCL Executive Director

The good news is in: 71 percent of Americans support labor unions. This is an all-time high and so encouraging as America celebrates our federal Labor Day holiday.

I’ve had some interesting labor experiences this past week while visiting my sister Jane in Minneapolis. Wednesday, we went by Starbucks and saw that it was closed due to striking workers. We cheered them on and went across to Caribou coffee for our drinks. Then a mailer showed up at Jane’s house addressed to her son, who is a Minnesota school teacher. It read “Stop Funding Racism with Your Union Dues.”

Hmmm, I thought, this is curious. Union dues to fund racism? Sounds fishy to me.

The flyer featured a photo of young African American woman holding teaching materials and said, “Your union really negotiated a contract that undermines the Civil Rights Act.”

I started to dig deeper and learned that the union has negotiated terms that guarantee a diverse work in Minnesota. That is what this group is calling “racism” – racism against white folks apparently. The mailer’s return address was from the “Freedom Foundation,Cincinnati OH”. At the bottom it says “CancelUnionDues.com”.

Yup, you guessed it – it’s a full-on attack on teachers’ unions, which I learned from reading an interview this week with AFT president Randi Weingarten. As part of an on ongoing attack on teachers by the right, this flyer was directed at the Minneapolis Federation of Teachers.

As for the Freedom Foundation mailer, the Maryland State Education Association has this to say about them:  The Freedom Foundation [is funded by] conservative donors, including the billionaire brothers Charles and David Koch, that supports conservative and libertarian organizations.

“When educators are aware of who’s funding [these anti-union campaigns], and what their agendas are, then the charade of these emails falls away pretty quickly,” said Adam Mendelson, a spokesperson for the Maryland State Education Association.

For a shot in the arm about labor rising, I recommend both President Weingarten’s Labor Day blog post along with AFL-CIO President Liz Shuler’s remarks to the Federation of International Football Associations titled Don’t Leave Workers Behind. Young people are excited about organizing unions – they get it – and we must be there to support them.

NCL launches campaign to warn Americans about Chinese government’s collection of U.S. consumers’ genetic data 

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September 7, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832 

WASHINGTON, D.C. – The National Consumers League (NCL) today announced it is launching a national campaign – www.protectmypatientdata.com – to warn Americans of the threat posed by the Chinese government’s collection of U.S. healthcare and genomic information. The campaign will target consumers, healthcare leaders, and lawmakers and will highlight the privacy and national security risks resulting from this bulk collection of data.

According to a February 2021 report from the U.S. National Counterintelligence and Security Center (NCSC), the Chinese government has made the collection of American healthcare information a top strategic priority and has gained access to large datasets in the U.S. and around the world through both illegal and legal means. This includes partnering with prominent research and healthcare entities in the U.S. to provide them with genomic sequencing services, allowing them to gain access to Americans’ health records.

On June 3, 2021 President Biden signed an Executive Order to further “address the threat of Chinese surveillance technology firms that contribute – both inside and outside China – to the surveillance of religious or ethnic minorities or otherwise facilitate repression and serious human rights abuses.”

“Genetic data remains one of the most sensitive and least protected types of personal information and yet the consequences of it falling into the wrong hands are profound,” said Sally Greenberg, executive director of NCL. “Authoritarian governments have already used genomic data to potentially surveil and control their own citizens and to conduct unsanctioned scientific research. That is why NCL is sounding the alarm and urging consumers and healthcare providers to be more diligent than ever when sharing personal healthcare information with third parties, particularly those funded or operated by the Chinese government.”

NCL has a long history of calling for consumer protections in the genetic testing industry. In February 2019, NCL issued a statement calling for investigation of direct-to-consumer genetic testing services like FamilyTreeDNA in the wake of reports that these services were sharing genetic data with law enforcement agencies.

On August 29, 2022, MGI Americas, an affiliate of Chinese genome research giant BGI, re-entered the U.S. next-generation sequencing market, having been previously barred from selling its genome sequencing machines in America. BGI is closely affiliated with the Chinese Communist Party (CCP) and People’s Liberation Army (PLA) and the data it collects has no legal protection against disclosure to the Chinese government.

A recent Reuters investigation found that BGI had scraped the DNA data of pregnant women from its pre-natal test kits and added them to the China National GeneBank, which it manages for the Chinese government. BGI has also been implicated in the repression of the Uighur minority in Xinjiang, for which two of its entities were sanctioned by the U.S. Department of Commerce.

NCL is urging providers and researchers to be cognizant of the risks of partnering with BGI and other Chinese healthcare companies, whose collection of data could be used to advance the country’s precision medicine industry and for more nefarious purposes, including the potential surveillance, exploitation, and manipulation of American citizens. NCL recently published a Genetic Privacy Bill of Rights and released a Policy Framework detailing steps that Congress, the Biden Administration, and industry can take to protect these consumer rights.

In addition to the education campaign, NCL will also embark on a series of initiatives to protect consumers:

  • Working with Members of Congress to create and implement new protections for genetic data, such as the Protecting Americans’ Data from Foreign Surveillance Act, introduced by Sen. Wyden (D-OR), Sen. Whitehouse (D-RI), Sen. Rubio (R-FL), Sen. Lummis (R-WY), and Sen. Hagerty (R-TN).
  • Engaging with the Biden Administration as they develop a potential Executive Order aimed at increasing protections for sensitive personal information, like genetic data.
  • Participating in the Federal Trade Commission’s (FTC) rulemaking process regarding privacy and data protection, to ensure that genetic data is also protected.
  • Educating health care research institutions and major health care associations about the unique risks posed by a lack of safeguards for genetic testing, and what they can do to increase protections.

 

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About the National Consumers League (NCL) 

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.

The National Consumers League mourns the death of NCL Awardee, labor champion and writer, Barbara Ehrenreich

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September 6, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832 

WASHINGTON, D.C. – The National Consumers League is mourning the death of one of our Trumpeter Awardees, best-selling author of Nickel and Dimed, and hourly worker champion Barbara Ehrenreich.  Ehrenreich accepted NCL’s Trumpeter Award in 2008, which was presented because of her writing on behalf of the working poor.  In Nickel and Dimed,  Ehrenreich traveled around the country working minimum wage jobs and writing about how very difficult that was to do; she wrote a compelling narrative about impossibility of making ends meet, even as a single woman, living on jobs like restaurant server and hotel maid. She described in graphic detail the daily grind and many demeaning experiences she encountered.

NCL Executive Director Sally Greenberg speaks to her immense impact on the labor industry, “Barbara Ehrenreich talked the talk, and walked the walk with her long and admirable history of raising awareness about the plight of working Americans.  Nickel and Dimed showed the world just how difficult it is to live on subsistence wages, find housing, health care, buy food, own a car and then have to go to work. She pulled the veil off of the faulty notion that working people can comfortably live off minimum wage jobs. We owe her a debt of gratitude for putting her life on hold to work these jobs and write about the economic reality for working people.”

NCL was honored to have Ehrenreich at our annual Trumpeter Dinner in 2008, present her with the Trumpeter Award, and we mourn her passing this past Labor Day holiday.

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About the National Consumers League (NCL) 

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.

Airline hotel and meal voucher commitments are a positive step forward

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September 2, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832 

WASHINGTON, D.C. – The National Consumers League (NCL) welcomes the major U.S. airlines’ commitments to provide meals and hotel rooms for travelers stranded due to delays within air carriers’ control. This announcement comes as consumer and passenger rights organizations have advocated for greater protections for travelers within the aviation industry.

The following statement is attributable to NCL Executive Director Sally Greenberg:   

“In July 2021, NCL, alongside a coalition of other consumer and passenger rights groups, met with Transportation Secretary Pete Buttigieg. A key ask to him was to publicly and personally make the DOT’s airline consumer protection work a priority. As today’s announcement shows, he is taking our challenge to heart. Absent pressure from the Department of Transportation, driven by an unprecedented wave of consumer complaints, it is hard to imagine that the biggest U.S. airlines would have made a commitment to provide meal and hotel vouchers and reimbursement to stranded consumers. While there is much more work to be done achieving a range of consumer protection reforms in the airline industry, today’s news is a positive step forward.” 

 

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About the National Consumers League (NCL) 

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.