Medical miracles do happen. But it helps to be loud, proud and good friends with 23andMe founder Anne Wojcicki, with lifelong expertise in being “a little bit crazy.”
Wojcicki took to Twitter on Tuesday to berate Stanford Medical Center for requiring that her friend, uninsured and critically ill, pay a $1 million deposit before he could be treated there.
“What kind of morals are reflected in our society when you know you can save someone’s life but refuse to do so (because) of payment?” she tweeted.
I have a friend critically ill at Santa Clara Valley Medical Center who can’t get transferred to Stanford for more advanced care without a $1M deposit. What kind of morals are reflected in our society when you know you can save someone’s life but refuse to do so bc of payment?!
— Anne Wojcicki (@annewoj23) April 3, 2018
They were shots heard ’round the valley.
“His family did the equivalent of calling 911,” she said in an interview Thursday. “They called me.”
As a result of Wojcicki’s high-profile campaign, her friend, whose name and illness were not disclosed, is now insured, has moved to Stanford and is getting advanced care not available at Santa Clara Valley Medical Center.
Before she was finished, Wojcicki gave a piece of her mind to Valley Medical, too, tweeting her frustration with the medical center for not promptly releasing his medical records to his family.
“”It’s hard to imagine what possibly takes them that long?! Why do we tolerate not having access to our own information?” she wrote.
Neither Stanford nor Valley Medical Center would address the case, citing patient privacy rules created under the Health Insurance Portability and Accountability Act. But Stanford hospital said it may seek assurance that a patient has enough coverage to fund the care needed after very complex procedures. Valley Medical Center said its electronic medical records travel and transfer between doctors.
Santa Clara Valley Medical Center says it takes them 5-10 business days to give you medical records! It’s hard to imagine what possibly takes them that long?! Why do we all tolerate not having access to our own information?
— Anne Wojcicki (@annewoj23) April 3, 2018
Yet before Wojcicki’s intervention, this week’s tale could have ended where it started, in a hospital bed at Valley Medical Center. Wojcicki’s friend was told he had run out of options and he wouldn’t survive, she said.
His family wanted a second opinion at Stanford Medical Center. But how?
Two big roadblocks stood in their way. Before Stanford doctors could evaluate him, they needed his medical records. But the family was told it would take five to ten business days before they could obtain them. And because he was uninsured, Stanford wouldn’t treat him unless he put down a $1 million deposit.
Enter Wojcicki, a longtime friend.
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She’s a huge fan of doctors at both hospitals, she says. She earned a biology degree at Yale, then did molecular biology research at the National Institutes of Health and UC San Diego. She was a Wall Street biotech analyst before founding 23andMe, which does tests that reveal your genetic ancestry and risk of disease. Now it’s a billion-dollar company.
But she’s frustrated by the complexity and dizzying demands of America’s trillion-dollar health care system, where patients must navigate everything from finding experts for hard-to-diagnose diseases to negotiating coverage and payments. She said she deplores the unequal power relationship between providers and patients, “rather than a partnership.”
Part of that frustration stems from her own personal experience. She’d have an uncle today, had he not died as a toddler after accidentally overdosing on aspirin — and after being rejected by a hospital because his parents couldn’t prove they could pay for care, she said. The incident traumatized Anne’s mother, Esther, who was 5 at the time her brother died. She is now a popular journalism teacher at Palo Alto High School.
Her sister, Susan Wojcicki, is CEO at YouTube, who was dealing with the trauma of Tuesday’s shootings at the company’s San Bruno headquarters just hours after Anne’s tweets.
When they were growing up, Anne said her medical chart had an asterisk, warning doctors about Esther. “This mother can be a bit difficult to deal with,” it said.
“It was a point of family pride,” she laughs. “We learned not to be afraid to demand the care we needed.”
Such assertiveness came in handy when Wojcicki was visiting her grandmother in a Palm Springs care home several years ago and couldn’t find a doctor in the building.
“I called 911,” she said. “Here I am in a hospice, and fire trucks and ambulance arrived.”
“Sometimes you have to be a little bit crazy to get care,” she said.
So the frustration this week felt by her dying friend… that was right in Wojcicki’s wheelhouse. Because squeaky wheels get the grease, her message was ear-splitting, amplified by social media.
Bay Area Legal Aid jumped in to help. So did the counselors at insurer Covered California. The Affordable Care Act has a program called Hospital Presumptive Eligibility, which allows temporary coverage to patients likely to qualify based on income. The patient got emergency insurance and acceptance by Stanford.
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But which Stanford doctor could help? Without immediate access to medical records, the patient’s family didn’t know enough to direct their search.
So Wojcicki took to Twitter again to rant about Valley Medical’s delays.
She urged the family to take iPhone photos of their loved one’s lab values and any other clinical information they could get. Then she started searching for the right clinicians, who offered her friend new options for advanced treatment.
“She has a lot of firepower. It helps to have a really big name to pull that off,” said Patricia Knight, founder of Pacific Coast Health Advocacy, a San Francisco-based private patient advocacy organization. “Wow. Good for her. Everyone needs an advocate, but not everyone has one.”
The health consumer coalition Health Access California welcomed the resolution but said it’s working toward a day when publicity isn’t needed.
“For the individual patient, it helps. But it shouldn’t have to take social media shaming for some of these systematic issues to be resolved,” said Anthony Wright, executive director of Health Access California. “If getting issues in the paper, or before legislative hearings, or called out on Twitter helps in specific situations, it is a useful tactic. But it shouldn’t have to come to that.”
Wojcicki agrees and said she’s seeking broad reforms: Greater funding for insurance counselors and legal advisers; easier access to second opinions, as well as guidance in locating experts; and, ultimately, a less complex health care system, such as single-payer.
“You have institutions filled with really good people, trying really hard, but the system is not fundamentally set up for the best interest of patients,” she said.
The moral of her story — for patients, families and the entire U.S. electorate — was again broadcast on Twitter:
“Good health care comes to those who complain,” she wrote.
Grateful to @StanfordMed for taking the risk on my friend and transferring him. He was told on Thursday at Santa Clara that he would die. But he didn’t. It’s important for everyone to remember to advocate for themselves. Good health care comes to those who complain.
— Anne Wojcicki (@annewoj23) April 4, 2018
