Fighting for Blood Clot Patients?

HRC Durham

Hillary Clinton, Durham NC 3/10/2016

I want to like Hillary Clinton.  I do. I’d love to see a female president one day. It’s just that every time I see and hear the Hillary Clinton campaign slogan “Fighting for Us”, I can’t help but think of the one population Clinton is not fighting for:   her fellow patients at risk for venous blood clots, medically known as venous thromboembolism (VTE).(definition at end)

VTE can happen to anyone, at any age—from healthy athletes and pregnant women to cancer patients and the elderly. It happened to me at age 34, my father at age 77 and it happens to nearly 900,000 Americans every year.  Clinton is also one of us, having been stricken with three VTE clotting eventswithin the past 13 years–deep vein thrombosis in 1998 and again in 2009 and transverse sinus vein thrombosis in 2012.

The good news is that most VTE and their complications are preventable—effective prevention, diagnostic and treatment strategies exist.

The bad news is there is no coordinated federal effort to push this life-saving educational information out into the hands of patients and clinicians where it can be actionable.

Unfunded prevention

President Obama’s FY 2017 Budget Proposal reflects national priorities of $4.1 trillion in federal spending.  Absent from the budget:  line-item funding for the #3 overall cause of death in the US and the #1 cause of preventable hospital death, VTE.

For perspective, VTE kills more Americans annually than breast cancer, AIDS and motor vehicle accidents combined—issues which receive targeted federal funding to address.  It even kills more than firearm homicides—something we hear far much more often about from both candidates and the media.

The CDC is the federal agency responsible for protecting the public’s health through the prevention of disease. While the CDC’s FY 2017 Congressional budget justification includes $87 million by name for two other thrombotic conditions, heart disease and stroke, there is no line-item specifically for VTE, which by the CDC’s own mortality figures, kills more Americans annually than stroke.

“A major health problem”

More shocking when you realize the government itself has said VTE needs to be targeted. Because most VTE are preventable and it is a problem projected to worsen as the population ages, it has been identified as a national health priority by the Surgeon General’s 2008 Call to Action, the CDC, the CMS Partnership for Patients and Healthy People 2020. The 2008 Surgeon General Call to Action report sounded the loudest alarm on VTE, calling it as “a major health problem, exacting a significant human and economic toll on the Nation” and acknowledging that “there are few public health problems as serious.”

Yet no direct line-item funding allocation specifically for VTE has been made to support these designations.  It is a public health priority in name-only–a preventable, potentially life-threatening public health issue which lacks both attention and government funding to adequately address.

Clinton Silence

Clinton could have played a key role in changing that.  Clinton’s first clot occurred when she was First Lady.  Her second episode occurred the year she transitioned from the US Senate to the State Department.  Her third VTE episode happened while she was Secretary of State.  All of Clinton’s clots occurred while she held positions of great public visibility and policy influence.  If at any of those junctures, she had stepped up to share her clotting experience, taken-up clot advocacy or encouraged Congress or the President to increase dedicated funding, millions of lives could have potentially been saved or at the very least, positively impacted.

She didn’t. To this day, Clinton has not spoken publicly about her thrombotic experience nor engaged those of us in the VTE patient community.

Avoiding the ‘clot’ word

Worse still, there seems to be a concerted effort by those closest to her campaign to NOT address blood clots.  Her spouse, former President Bill Clinton, has given four paid speeches to the Patient Safety Movement Foundation’s annual conference whose mission is to address sources of preventable hospital death.  The most common cause of preventable hospital death is VTE clots, according to Agency for Healthcare Research and Quality (AHRQ).  Yet oddly, rather than bring attention to VTE in his $315,000 fee talks (according to a financial disclosure statement filed by Hillary Clinton and the PSM Foundation’s IRS 990 tax filing), Bill Clinton chose to recount the medical story of a cousin with sepsis and never once mentioned his wife’s three-time VTE experience.

What is troubling to me as an advocate, is why the continued cone of silence on blood clots from both Clintons?  Given both the personal impact and their influential positions, both Clintons should be speaking out–without the auspices of a paid speech–for greater blood clot awareness and funding.  I’m not sure from the campaign rhetoric who Hillary Clinton is fighting for, but past experience shows clearly it is not for blood clot patients like myself.


About VTE

What is VTE?

Venous thromboembolism (VTE) is the medical term for a blood clot occurring a deep vein of the body. Depending on the location (leg, arm, lung, abdomen, brain), VTE may be referenced by multiple names such as: deep vein thrombosis (DVT), pulmonary embolism (PE), portal vein thrombosis, splenic vein thrombosis, mesenteric vein thrombosis, renal vein thrombosis, sinus vein thrombosis, cerebral vein thrombosis–all are under the VTE umbrella.

Public health scope of VTE

“Deep Vein Thrombosis and Pulmonary Embolism (DVT/PE) represent a major public health problem, exacting a significant human and economic toll on the Nation.”-US Surgeon General 2008 Call to Action

VTE is a leading cause of death and disability:

  • Over 900,000 Americans have a VTE event each year and it causes more deaths than breast cancer, AIDS and car crashes combined.[1],[2]
  • VTE is the third leading cause of death, but is not widely known because VTE is excluded from CDC Vital Statistic reports which reflect only 113 select causes of death.[3]
  • Upwards of a third of VTE patients die within one month of diagnosis.[4]
  • Even with optimal medical care, half of VTE patients will have long-term complications and one-third will have a recurrent clot within 10 years.[5]
  • VTE is the leading cause of preventable hospital deaths in the United States. ~60% of VTE are associated with hospitalization.[6]
  • VTE is the leading cause of maternal death in the United States.[7]
  • An estimated $7-12 billion in medical costs in the US each year can be attributed to DVT and PE.[8]
  • High levels of anxiety, depression and psychological stress have been reported among patients with VTE.[9]

Funding

By comparison to other better known conditions:

  • AIDS funding = $31.7 billion[11], CDC portion of AIDS funding = $927.8 million10
  • Breast & cervical cancer funding (in 1 combined line-item), CDC = $169 million

Learn more


My Suggestions on Federal Action Needed to Change These Statistics

To target VTE, the President and Congress need to:

  1. Establish a task force (as has been done for other conditions)  to review, consolidate and coordinate all US VTE efforts across federal agency stakeholders–CDC, CMS, AHRQ, NIH, FDA, HRSA, Veterans Affairs, Rural Health.  Currently, efforts are siloed reflecting a lack of cross-agency collaboration.
  2. Make a clearly named VTE line-item funding allocation.
    1. Funds should carry the mandate that they can only be utilized for VTE, prohibiting the ability to divert funds towards other conditions.
  3. A clear line of reporting and accountability should be implemented with attached funds to ensure results.
    1. If it is determined that CDC should maintain responsibility for public health prevention of VTE, then a clearly named VTE line-item funding allocation must be made within the same CDC administrative unit that addresses other thrombotic conditions–the National Center for Chronic Disease Prevention and Health Promotion.  If another agency is chosen, VTE should be paired with related thrombotic conditions to take advantage of existing expertise.
  4. Require HHS/CDC to update the National Vital Statistics reporting to add VTE to the current list of 113 select causes of death.  Neither the public nor Congress can be aware of the true scope of a condition which is not reported.

REFERENCES

[1] CDC Statistics on DVT/PE (VTE) http://www.cdc.gov/ncbddd/dvt/data.html

[2] 2008 Surgeon General Call to Action reporthttp://www.ncbi.nlm.nih.gov/books/NBK44178/pdf/Bookshelf_NBK44178.pdf

[3] Selective statistics diminish VTE burden https://bethwaldron.com/selective-statistics-diminish-vte-burden/

[4] CDC Data and Statistics, DVT/PE, 12/4/2015 http://www.cdc.gov/ncbddd/dvt/data.html

[5] Beckman MG, Hooper WC, Critchley SE, Ortel TL. Venous thromboembolism: a public health concern.Am J Prev Med. 2010 Apr;38(4 Suppl):S495-501.  http://www.ncbi.nlm.nih.gov/pubmed/20331949

[6] AHRQ, Preventing Hospital Associated Venous Thromboembolism: A Guide for Effective Quality Improvement, October 2015, Publication: 16-0001-EF  http://www.ahrq.gov/professionals/quality-patient-safety/patient-safety-resources/resources/vtguide/index.html and Greg Maynard, Venous Thromboembolism (VTE) Prevention in the Hospital (Text Descript: Slide Presentation. June 2010. Agency for Healthcare Research and Quality, Rockville, MD.http://archive.ahrq.gov/professionals/quality-patient-safety/quality-resources/value/vtepresentation/maynardtxt.html

[7] Berg CJ, Atrash HK, Koonin LM, Tucker M. “Pregnancy-related mortality in the United States 1987-1990”. Obstet Gynecol 1996;88(2):161-7 Also see Marik. P.E. and Plante, L.A. “Venous Thromboembolic Disease and Pregnancy”. New England Journal of Medicine, volume 359, number 19, November 6, 2008, pages 2025-2033.

[8] Gross, Scott et al The economic burden of incident venous thromboembolism in the United States: A review of estimated attributable healthcare costs, Thrombosis Research, November 24, 2015,  http://www.thrombosisresearch.com/article/S0049-3848(15)30209-7/abstract

[9] Simon Noble “Long-term psychological consequences of symptomatic pulmonary embolism: a qualitative study” BMJ Open http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3987719/

[10] CDC FY 2016 budgethttp://www.cdc.gov/fmo/topic/Budget%20Information/appropriations_budget_form_pdf/FY2016_CDC_CJ_FINAL.pdf

CDC FY 2017 Request http://www.cdc.gov/budget/fy2017/congressional-justification.html

[11] Kaiser Family Foundation U.S. Federal Funding for HIV/AIDS: The President’s FY 2016 Budget Request

Apr 13, 2015 http://kff.org/global-health-policy/fact-sheet/u-s-federal-funding-for-hivaids-the-presidents-fy-2016-budget-request/#footnote-148589-1

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