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Government Health Care Website Quietly Sharing Personal Data

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This Nov. 12, 2014 file photo shows the HealthCare.gov website, where people can buy health insurance, on a laptop screen, shown in Portland, Ore. Not only do more Americans have health insurance, but the number struggling with medical costs has dropped since President Barack Obama's health care law expanded coverage, according to a study released Thursday Jan. 15, 2015. (AP Photo/Don Ryan, File)

This Nov. 12, 2014 file photo shows the HealthCare.gov website, where people can buy health insurance, on a laptop screen, shown in Portland, Ore. (AP Photo/Don Ryan, File)

RICARDO ALONSO-ZALDIVAR, Associated Press
JACK GILLUM, Associated Press

WASHINGTON (AP) — The government’s health insurance website is quietly sending consumers’ personal data to private companies that specialize in advertising and analyzing Internet data for performance and marketing, The Associated Press has learned.

The scope of what is disclosed or how it might be used was not immediately clear, but it can include age, income, ZIP code, whether a person smokes, and if a person is pregnant. It can include a computer’s Internet address, which can identify a person’s name or address when combined with other information collected by sophisticated online marketing or advertising firms.

The Obama administration says HealthCare.gov’s connections to data firms were intended to help improve the consumer experience. Officials said outside firms are barred from using the data to further their own business interests.

There is no evidence that personal information has been misused. But connections to dozens of third-party tech firms were documented by technology experts who analyzed HealthCare.gov and then confirmed by AP. A handful of the companies were also collecting highly specific information. That combination is raising concerns.

Leading lawmakers on Tuesday asked the administration to explain how it oversees the data firms to make sure no personally identifiable information is improperly used or shared.

“This new information is extremely concerning, not only because it violates the privacy of millions of Americans, but because it may potentially compromise their security,” Sens. Orrin Hatch, R-Utah, and Charles Grassley, R-Iowa, wrote to the administration.

Created under the president’s health care law, HealthCare.gov is the online gateway to government-subsidized private insurance for people who lack coverage on the job. It serves consumers in 37 states, while the remaining states operate their own insurance markets.

A former White House chief information officer, Theresa Payton, said third-party vendors are a weak link on any website. She questioned both the number of vendors on HealthCare.gov and the specific details some of them are collecting.

“You don’t need all of that data to do customer service,” said Payton, who served under President George W. Bush. “We know hackers are just waiting at the door, salivating to get at this data.”

The privacy concerns come against the backdrop of President Barack Obama’s new initiative to protect personal data online. Separately, the administration is getting the health care website ready for the final enrollment drive of 2015, aiming to have more than 9 million people signed up by Feb. 15 for subsidized private coverage.

Administration spokesman Aaron Albright said outside vendors “are prohibited from using information from these tools on HealthCare.gov for their companies’ purposes.” The government uses them to measure the performance of HealthCare.gov so consumers get “a simpler, more streamlined and intuitive experience,” he said.

The administration did not explain how it ensures that companies were following the government’s privacy and security policies.

Albright said HealthCare.gov comports with standards set by the federal National Institute for Standards and Technology. But recent NIST guidance cautions that collecting bits of seemingly random data can be used to piece together someone’s identity.

In a recent visit to the site, AP found that certain personal details — including age, income and smoking habits — were being passed along, likely without consumers’ knowledge, to advertising and Web analytics sites.

Third-party outfits that track website performance are a standard part of e-commerce. HealthCare.gov’s privacy policy says in boldface that “no personally identifiable information is collected” by these Web measurement tools.

Google said it doesn’t allow its systems to target ads based on health or medical history information. “When we learn of possible violations of this policy, we investigate and take swift action,” the company said in a statement.

Still, the outside connections surprised a tech expert who evaluated HealthCare.gov’s performance for the AP.

“Personally, I look at this … and I don’t know what is going on between the government and Facebook, and Google, and Twitter,” said Mehdi Daoudi, CEO of Catchpoint Systems. “Why is that there?”

Tracking consumers’ Internet searches is a lucrative business, helping Google, Facebook and others tailor ads to customers’ interests. Because your computer and mobile devices can be assigned an individual signature, profiles of Internet users can be pieced together, generating lists that have commercial value.

Third-party sites embedded on HealthCare.gov can’t see your name, birth date or Social Security number. But they may be able to correlate the fact that your computer accessed the government website with your other Internet activities.

Have you been researching a chronic illness like coronary artery blockage? Do you shop online for smoking-cessation aids? Are you investigating genetic markers for a certain type of breast cancer? Are you seeking help for financial problems, or for an addiction?

Daoudi’s company, Catchpoint Systems, came across some 50 third-party connections embedded on HealthCare.gov. They work in the background, unseen to most consumers.

The AP replicated the results. In one 10-minute visit to HealthCare.gov recently, dozens of websites were accessed behind the scenes. They included Google’s data-analytics service, Twitter, Facebook and a host of online advertising providers.

“I think that this could erode … confidentiality when dealing with medical data and medical information,” said Cooper Quintin, a staff technologist with the Electronic Frontier Foundation, a civil liberties group.

Copyright 2015 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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Black History

George Cook: The Inventor Who Made Fishing Smarter

George Cook was a Black American inventor from Louisville, Kentucky. He was born in 1863, during a time when Black Americans faced unfair laws, limited opportunities, and many barriers to education, jobs, and recognition. Even with these challenges, he became known for his intell

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A copy of the patent for George Cook’s Automatic Fishing Device. Public domain.

George Cook was a Black American inventor from Louisville, Kentucky. He was born in 1863, during a time when Black Americans faced unfair laws, limited opportunities, and many barriers to education, jobs, and recognition. Even with these challenges, he became known for his intelligence, honesty, and ability to think in practical ways. Some records say he worked as a cook for Buffalo Bill Cody and later as a chef on a private dining car for the Louisville and Nashville Railroad. He was even known by the nickname “Honest Mister Cook.”

As with many Black American inventors and scientists of that era, there is little biographical information about Mr. Cook.

Cook’s most famous invention was the Automatic Fishing Device. He received U.S. Patent No. 625,829 for it on May 30, 1899. His patent shows that he was not just someone with an idea, but someone who made it happen.

So, what did the Automatic Fishing Device do? Imagine fishing with a line in the water. Usually, you have to watch carefully and pull the line at just the right moment when a fish bites. Cook wanted to make that process easier. His device was designed to react when a fish pulled on the line. The tension from the fish would trigger a lever. That lever would release a spring-loaded part of the device, causing it to move quickly and help pull in the line. The device also had an alarm gong that would ring to let the fisher know something was happening.

This invention was important because it used simple mechanical ideas in a clever way. Springs, levers, rails, and alarms were not new by themselves, but Cook combined them to solve a real problem. His device showed how inventors often take familiar parts and arrange them in a new way to make life easier. 

Cook looked at fishing and asked, “How can this be improved?” Then, he created a device that could respond automatically when a fish tugged on the line. His invention let fishermen relax instead of watching the line for hours, trusting the alarm to alert them.

Cook may not be as famous as some inventors, but his Automatic Fishing Device shows that creativity and innovation can be applied anywhere. His legacy lives on as part of the larger story of Black innovation in America.

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Environment

“The Power to See Threats Sooner”: Gov. Newsom, Safety Officials Showcase California’s Investments in Hi-Tech Wildfire Prevention

On July 21, Gov. Gavin Newsom held a presentation in Sacramento, alongside state emergency officials, to showcase California’s major investments in cutting-edge firefighting technology and wildfire prevention. The media event took place at McClellan Airport in Sacramento County,

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Gov. Gavin Newsom speaks during a July 21 presentation at McClellan Park highlighting California’s investments in advanced firefighting technology and wildfire prevention tools. CBM photo by Antonio Ray Harvey.

On July 21, Gov. Gavin Newsom held a presentation in Sacramento, alongside state emergency officials, to showcase California’s major investments in cutting-edge firefighting technology and wildfire prevention.

The media event took place at McClellan Airport in Sacramento County, a primary hub for state aerial firefighting operations. Newsom used the presentation to highlight the state’s modern, tech-driven strategy to combat increasingly severe wildfires.

“California leads with science, innovation, and grit. We are meeting this moment with urgency and building 21st-century solutions for a 21st-century crisis,” Newsom stated. “And through it all, our extraordinary firefighters continue to step up, stand in harm’s way, and protect our communities.”

California Natural Resources Agency Secretary Wade Crowfoot, CAL FIRE Chief Joe Tyler, and California Governor’s Office of Emergency Services Director Caroline Thomas Jacobs appeared with Newsom and provided updates about their respective agencies.

Under the Newsom administration, California’s fire protection budget has nearly doubled since 2019 — from $2 billion to $3.8 billion, including more than $2.5 billion in wildfire resilience and forest health projects.

Newsom detailed the expansion of artificial intelligence (AI) programs, predictive analytics, and sophisticated software used to detect fires at their earliest stages. He also highlighted the launch of FireSat satellites, a dedicated space network designed to dramatically improve early wildfire detection and tracking.

“Every innovation we adopt supports our people on the front lines who work tirelessly to protect our communities when wildfire strikes,” Tyler stated. “Technology and innovation help us do our jobs more quickly and safely; however, we still need all Californians to stay vigilant, support our firefighters, and work together to build a safer, more resilient California.”

In addition, CAL Fire showcased a fleet of more than 100 AI-guided firefighting drones positioned strategically across California to provide real-time mapping and aerial monitoring. 

The presentation stated that California operates the nation’s largest state-owned aerial firefighting fleet, including the impending addition of two more C-130 aircraft by the end of the year, alongside a workforce of over 11,000 personnel.

“Technology is transforming how California prepares for wildfire, giving us the power to see threats sooner, position resources before fires start and move mutual aid faster when every second counts,” Thomas Jacobs said. “Governor Newsom’s investments are helping us turn real-time intelligence into action, so firefighters and local communities have the people, equipment and information needed to save lives and keep fires from becoming major disasters.”

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Black History

Closing the Gap: What the Data and Frontline Experiences Reveal About Cancer in Black California

OAKLAND POST — According to a UC Davis study, “The Burden of Cancer Among Black/African Americans in California,” Black cancer patients were more likely than White patients to be diagnosed at a later stage and to have multiple health conditions, making treatment more difficult. They were also far more likely to live in low-income communities and rely on public insurance—evidence that economic inequality and barriers to care are helping drive disparities in the state’s cancer crisis.

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Kris Benz, a disabled Black veteran, was diagnosed with salivary duct carcinoma, a rare cancer that strikes only about 1 in a million people each year. Photo courtesy of Kris Benz.

Photo 

Kris Benz, a disabled Black veteran, is no stranger to cancer. In 2012, he was diagnosed with salivary duct carcinoma, a cancer so rare it strikes only about 1 in a million people each year.” But he beat it after six weeks of radiation and removal of his right salivary gland.

“I was cancer-free after six months,” he said.

Now, a new concerning mass has appeared in his neck despite months of scans. His doctor suspects it is cancerous, but Benz, who lives near Palm Springs, will not know for certain until a biopsy.

Compounding that uncertainty is a gap in his coverage. Benz is two work credits short of qualifying for Medicare, but returning to work could jeopardize his Department of Veterans Affairs (VA) disability status and funding. Buying Medicare Part A would cost $568 a month, leaving him “winging it.”

Benz is also frustrated that the VA will not schedule his scan and biopsy before his consultation, which will require another round of appointments afterward.

“It’s about money,” he said. “Doctor’s appointments, they get the money. There’s no preventive medicine here anymore.”

Although he calls the VA “a great organization,” he believes it is hampered by bureaucracy. For now, he remains “in limbo” waiting to complete his appointments. 

His experience reflects one of the most persistent health equity challenges facing Black communities: access to care.

According to a UC Davis study, “The Burden of Cancer Among Black/African Americans in California,” Black cancer patients were more likely than White patients to be diagnosed at a later stage and to have multiple health conditions, making treatment more difficult. They were also far more likely to live in low-income communities and rely on public insurance—evidence that economic inequality and barriers to care are helping drive disparities in the state’s cancer crisis.

That same study reports that between 2014 and 2018, the ten cancers most frequently diagnosed among Black/African American women in California were, from one to ten, breast, lung, colorectal, uterine, pancreatic, kidney, non-Hodgkin lymphoma, thyroid, myeloma, and ovarian cancers. During the same period, the ten most commonly occurring cancers among Black/African American men in California were, from one to ten, prostate, lung, colorectal, kidney, bladder, liver, non-Hodgkin lymphoma, pancreatic, myeloma, and oropharyngeal cancers. 

Researchers attribute the gaps not to biology but to social and economic inequality connected to structural racism. An American Cancer Society analysis found educational attainment was a stronger predictor of the mortality gap than race alone.

“These disparities are not because Black people are inherently less healthy,” said Rhonda Smith, executive director of the California Black Health Network. “They are the result of decades of inequitable policies, structural racism, unequal access to quality care, and chronic underinvestment in our communities.”

Dr. Flojaune Cofer, an epidemiologist and public health policy expert, said health outcomes are shaped as much by circumstances as by biology. She traced her understanding of disparities to her father’s death from heart disease at age 47. He began smoking as a child when tobacco companies marketed cigarettes aggressively and disproportionately to Black communities.

“My father’s story is not about individual choices,” Cofer said. “My father’s story speaks to institutional and systemic harm.”

“Health is not just what happens in the doctor’s office,” she added. Social determinants include neighborhood conditions, housing stability, nutritious food, transportation, and the ability to take time off work for care.

At federally qualified health centers, tight appointment schedules can make it difficult for medical providers to detect cancer early and earn the trust patients need to discuss troubling symptoms.

“We have only 15 minutes when you are working in a federally qualified health center — you have 15 minutes to assess, diagnose, treat, and write your note per patient,” said Jamie Garcia, a registered nurse who has been certified in oncology nursing for more than a decade and works at AdventHealth White Memorial in East Los Angeles.

Garcia said the rushed pace, driven partly by billing requirements tied to federal funding, leaves little time for providers to build relationships with patients. It can also allow health care professionals’ implicit biases to go unrecognized and unchallenged.

For Garcia’s patients, who are predominantly Black and Latino residents of surrounding communities, the consequences can be immediate and alarming. Many arrive with visibly advanced tumors after going without insurance, adequate coverage, a primary care physician or routine screenings.

Garcia recalled treating one patient whose tumor had grown large enough to be visible through the skin.

“The fact that I even got to see that is a failure and an atrocity,” she said.

Assemblymember Lori D. Wilson (D-Suisun City) sought to reduce another barrier through Assembly Bill 1570, which would have eliminated out-of-pocket costs for medically necessary diagnostic and supplemental breast imaging. It passed the Assembly Health Committee 16-0 but died in the Appropriations Committee. Wilson plans to reintroduce it during the next legislative session without biopsy coverage.

Wilson announced her breast cancer diagnosis in April 2023. She received timely, quality care but “saw others with similar diagnoses face different outcomes.”

“Some people who got diagnosed at the same time as me — their timing of their surgeries and treatment was delayed in comparison to my own,” she said. “Watching people go through and suffering unnecessarily was heartbreaking to me.”

Her follow-up imaging required only a $10 copay. “I’ve had friends have to pay $1,000 to get that secondary screening,” Wilson said.

Smith warned that policy changes could further erode access. California’s Every Woman Counts screening program is losing funding and being scaled back, she said. About one in three Black Californians relies on Medi-Cal, according to the state.

Smith also cited federal Medi-Cal work requirements projected to cause 1.1 million Californians to lose coverage by 2029-30. “Health equity is no longer simply about improving outcomes,” she said. “It’s about protecting access.” 

Californians seeking low-cost cancer screening can contact a local federally qualified health center or the California Department of Public Health’s Every Woman Counts program. The California Black Health Network also offers referrals and advocacy resources.



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