Patient safety promises not kept

BCTalk2016Former President Bill Clinton is speaking this weekend, 1/23/2016, at the World Patient Safety, Science and Technology Summit, an invitation-only event sponsored by the Patient Safety Movement Foundation.  This marks Clinton’s 4th time speaking at the conference. The arrangements this year are unclear, but for his 2014 talk, Clinton earned $315,000, according to a financial disclosure statement filed by Hillary Clinton and the organization’s IRS 990 tax filing.

The Summit is advertised to “bring together leaders from healthcare organizations, the healthcare industry, the patient advocacy community, and public policy makers to discuss solutions to the leading challenges causing preventable death in hospitals.”

Yet oddly, neither the Summit nor the Foundation which hosts it have ever addressed the leading cause of preventable hospital death–blood clots medically known as venous thromboembolism (VTE).  The Agency for Healthcare Research and Quality (AHRQ) says “venous thromboembolism—is the most common preventable cause of hospital death.”  Definition: venous thromboembolism (VTE)  = deep vein thrombosis (DVT) + pulmonary embolism (PE).

A nonprofit foundation dedicated to preventing hospital death which does not address the most common cause of hospital death?  It is rather odd.

The Clinton – VTE connection

What makes it even stranger is when you consider that Bill Clinton should have a very personal interest in VTE advocacy.

HRC health letter snipHillary Clinton had 3 VTE clotting events within the past 13 years–1998, 2009 and 2012.  Since VTE has impacted the Clinton family directly, you’d think VTE would be a good issue for them to advocate around.  The Clinton’s would be the perfect spokespersons for this condition. Yet, Hillary has never spoken publicly about her experience nor engaged those of us in the VTE patient community.

As an advocate, I’ve had a difficult time understanding this inaction because VTE is a condition which desperately needs a champion.  VTE receives $0 line-item funding in the federal budget, despite being called by a 2008 Surgeon General report “a major health problem, exacting a significant human and economic toll on the Nation”.  VTE is a public health priority in name only.

VTE is preventable, yet it kills more Americans annually than AIDS, breast cancer and car crashes combined. More people die from VTE than stroke.  It even causes more deaths than firearm homicides—ie things we hear much more often about. VTE is a condition needing someone to rally the public and policymakers to address it.

I can only assume that the Clintons have chosen to be silent about VTE so as not to invite questions about Hillary’s health.  This is understandable and we all have a right to privacy. But at the same time, Hillary Clinton isn’t just anyone since she is running for President. There are legitimate unanswered questions—both about risk of clot recurrence and risk of anticoagulation.  A puzzler I’ve had, that no media have picked up on, is why is there an inaccuracy about treatment in the medical release issued by Clinton’s physicianDr. Lisa Bardack 7-28-15?  Dr. Bardack says Clinton was “found to have a transverse sinus venous thrombosis and began anticoagulation therapy to dissolve the clot.” when this is, by definition, impossible. Anticoagulants do not dissolve clots; they prevent new ones from forming and existing ones from growing larger.

The Patient Safety Movement connection to government

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Vice President Joe Biden addressing the January 2015 Patient Safety Movement event

The founder of the Patient Safety Movement has a history of Democratic donations.  The Patient Safety Movement Foundation was founded by Joe Kiani, who is also the Founder, Chairman, and CEO of Masimo Corporation. The Patient Safety Movement Foundation‘s president, Jim Bialick, said in a story on NPR’s website that the organization is “primarily funded by a charitable offshoot of the company, the Masimo Foundation for Ethics, Innovation, and Competition in Healthcare”.  According to IRS Form 990’s filed by the organization, The Masimo Foundation for Ethics, Innovation, and Competition in Healthcare  has made multiple grants to the Clinton Foundation.  Joe Kiani has also shared the stage with Bill Clinton as a speaker at the 2015 Clinton Foundation Health Matter Summit.

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Bill Clinton giving 2016 speech w/ Kiani seated

Masimo Corp makes medical devices, such as pulse oximeters–the device which gets clipped to your finger at the hospital that tracks pulse and blood oxygen.  On August 12, 2014, the FDA sent a warning letter to Mr. Kiani stating that Masimo didn’t adequately investigate dozens of reports that its devices may have malfunctioned. At that time, there were news reports questioning the company’s commitment to patient safety despite it’s promotion of safety via the Patient Safety Movement. Kiani has also been under scrutiny for the timing of his political contributions–the New York Times reported about Mr. Kiani’s ability to gain White House access in 2012 in connection with his desire to repeal an excise tax on his industry.

The Patient Safety Movement knowledge of VTE

One year ago, a representative for the Patient Safety Movement Summit, Mike Drummond of Masimo Corp who was handling media relations for the Summit, posted in the ProPublica Patient Safety Community Facebook group to engage advocates like myself  in supporting the Summit. I reached out to Mr. Drummond via email to educate him about VTE and encourage the organization to address this source of harm. He responded immediately and was super excited, said he’d known “more than a few of the troops with whom I embedded in Iraq suffered from this”, said he’d pass the info about VTE on to “the team” and invited me to attend the group’s June meeting in California where the conference topics are selected.

Mr. Drummond said “Let me know if I can help with arrangements.”  Which with that, I took the invitation to be quite serious.  I live in North Carolina—so not exactly cheap or practical for a patient like me to fly across country to California for a single meeting.  As the year progressed, I heard nothing back.  I sent multiple email follow-ups to touch base with no reply.

So now it is conference weekend 2016 for which I had hoped VTE would finally be on the agenda, with Bill Clinton at the podium reinforcing its personal human impact.  Unfortunately, the two topics chosen as priorities for the event were airway safety and optimizing obstetric safety—legitimate health needs, yes, but certainly not at the level of VTE deaths.

PatSafetyYesterday on Twitter, I engaged the Patient Safety Movement’s Joe Kiani and Jim Bialick about why VTE, the leading cause of preventable hospital death, had never been addressed by a group dedicated towards preventable hospital death.  Joe replied “join us on June 10 at our mid year meeting. That’s when we choose what to address next.”

So, I’m right back to where I was one year ago. So are others.   Former President Bill Clinton is still on the speaking circuit talking about patient harm without talking about one of the biggest sources of harm–VTE.  Hillary Clinton is running for President, still silent on VTE even though she is a 3x survivor herself. There is still no funding in the federal budget for VTE. And 900,000 Americans annually are still suffering from VTE–300,000 of them dying from it.

Most VTE and deaths are preventable.  Effective prevention, diagnostic and treatment strategies exist. But until the people and organizations who say they wish to improve health care and address patient harm step up and follow their words with action, nothing changes.

Please know that I am not reporting this because I’m anti-Clinton–I’m actually quite liberal minded—it’s just that I’m pro-patient more than I’m pro-politician.  Patient needs are getting caught up in politics and that’s just not right.


UPDATE 1/24/16   

Bill Clinton and Joe Kiani share the stage 1/23/16, Laguna Cliffs Marriott Resort & Spa, Dana Point, CA   Video link here.  Former President Clinton shared a touching family example about a cousin who died from an infection. No mention of blood clots, VTE.

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