Vascular Disease Foundation

From: Peter Gloviczki, MD, Sheryl Benjamin and Michele L. Patarino
        On behalf of the Board of Directors of the Vascular Disease Foundation 

The Vascular Disease Foundation (VDF) was formed in 1998 to improve public recognition of the prevalence and seriousness of vascular disease. It is the only national not-for-profit, 501 (c) (3), public, intersocietal foundation that promotes vascular public education and vascular disease awareness.  The VDF is broad in scope, encompassing all vascular diseases, and not only a specific syndrome or circulation.  The VDF is multi-disciplinary, and not derived from a single professional discipline.  Eight professional vascular societies, representing over 40,000 members, are represented on the Board of Directors.

The mission of the VDF is to reduce the widespread prevalence and effects of vascular diseases by increasing public awareness of the benefits of prevention, prompt diagnosis and comprehensive management and rehabilitation.

To achieve its goals, the Foundation established a web site, disseminates electronic and printed educational information to the public, fosters vascular disease patient advocacy initiatives, and provides educational information about vascular disease to serve the individuals who suffer these syndromes as well as to those who are at risk for development of the common vascular disorders.  In 2004 the Vascular Disease Foundation has continued to increase its ability to offer broad-based, intersocietal vascular public education and advocacy. 

Peripheral Arterial Disease (PAD) has been the initial and main focus of the VDF with the goal to increasing public awareness to improve prevention, diagnosis and comprehensive treatment of patients with claudication and critical limb ischemia. Ideally, long-term public education for any common disease is best performed by bringing together groups and organizations concerned with the same cause.  During the past two years the VDF achieved significant success by bringing together a large number of national organizations and societies with the aim to organize a national PAD awareness campaign.

It is the philosophy of the VDF that ideal long-term public education for any common disease is best performed in collaboration with the NHLBI and its Healthy People 2010 programs.  Over the past year, we have succeeded in hosting on January 15-16, 2003, a Strategic Planning Meeting with the NHLBI.  Almost 50 individuals from 17 organizations participated and concurred that the meeting was productive and will serve as a realistic step forward toward achieving the national vascular public educational consensus that will serve as a milestone of what an inspired, broad-based vascular coalition can accomplish. Initial results of this meeting included a summary report published by the NHLBI in May 2003 .http://www.nhlbi.nih.gov/health/prof/heart/other/pad_sum.pdf ).  As well, Alan Hirsch, Peter Gloviczki and the VDF Board has co-authored a manuscript (“The Mandate for Creation of a National PAD Public Awareness Program: An Opportunity to Improve Cardiovascular Health”) that was published in the Journal for Vascular Surgery.

On June 17, 2004 the VDF co-hosted the “Second Strategic Planning Meeting for Public and Professional PAD Education” with the National Heart Lung and Blood Institute (NHLBI) in Bethesda, MD.  This meeting brought together Coalition partners and sponsors to:

(a) Inaugurate the coalition and build its operational framework,

(b) Evaluate potential synergies to be derived by coalition organizations, and

(c) Establish initial plans for a national PAD campaign. 

 Since then, the Coalition is finalizing bylaws and a business plan, and has started to approach sponsors for funding.  We are pleased that all eight VDF society partners are involved with the Coalition, in addition to NHLBI and other organizations including the American Diabetes Association; American Heart Association; American Podiatric Medical Association; American Radiological Nurses Association; and the Peripheral Vascular Surgery Society. As a direct result of this meeting and all of these organizations working together as a coalition, NHLBI has agreed to help fund a three-year public PAD awareness campaign!  The Coalition will need to provide scientific expertise, and augment the public campaign with a related campaign focused on the provider community. 

The PAD Coalition also responded to the September 24th Wall Street Journal article, “Two Simple Tests Can Prevent Stroke, But Few Get Them” with a letter to the editor about our Coalition’s efforts to create a PAD awareness campaign, that will complement the article’s point of creating additional public awareness about ABI’s.

Under the direction of a select group of vascular specialists, our web site www.vdf.org provides a wide coverage of vascular information on prevention, treatment and outcome of arterial and venous diseases. The  web. site has more than 400 visitors daily and more than 200 other web sites list the Foundation as a link. The site continues to utilize its easy-to-surf format, reader-friendly information, pictures of “real-life” patients, shared personal stories, and video clips to reach the public and inform them about vascular diseases.  Features such as a discount drug program, the Excellence in Care Award and Online Giving enhance the usefulness of the site for our visitors.   We have a special section on memorials to honor the memory of friends and family members.

Over 250 other websites now link to www.vdf.org.  Content on the web site has been updated and enhanced.  Sections on DVT and pulmonary embolism were posted in early 2004.  We are currently reviewing the PAD section to maintain its timeliness, and expect to expand information on PAD treatment, rehabilitation and exercise therapy. In addition, we are working on compiling a list of current clinical trials related to vascular disease.

Our free newsletter, Keeping in Circulation, has doubled its circulation in 2002 and increased from two issues per year to four.  The focus broadened to cover topics related to all vascular diseases and related health issues.  Each issue includes new series such as “A Daily Dose of Walking,”  "Spotlight on Sponsors" and first-hand patient stories.   Our circulation numbers passed 6,000 individual subscribers and many vascular specialists in clinics and waiting rooms request additional copies.

Our Spring 2004 newsletter focused on Abdominal Aortic Aneurysms and Raynaud’s Disease, while the summer edition focused on Critical Limb Ischemia and amputation.   The fall issue deals with renal artery stenosis and vascular malformation. 

The fourth annual PAD awareness event was held in August in Denver.  The event provided information to the public (attendees received educational materials and presentations in addition to ABI screenings), and gave the Foundation the opportunity to collect important data, in addition to receiving local media attention. 

The Foundation’s brochure “Peripheral Arterial Disease (PAD) Increases Your Risk for Heart Attack and Stroke” is widely distributed nationally.   Clinics, doctor’s offices, health fairs, and individuals request the pamphlet and other printed materials through the website and our toll free number   This spring, we translated the PAD brochure into Spanish, and over the summer we published a new in-depth patient resource on Venous Thromboembolism (VTE). 

The VDF has adopted a new logo for our printed materials and website.  Look for it on the new venous thromboembolism “Focus on Blood Clot”  flyer!

The Foundation has written two letters to CMS to comment on the proposed rules for cardiovascular screening advocating for ABI’s as part of that definition.

At our Board Meeting late October, the Foundation will review its strategic plan and determine goals and objectives for 2005, to include leadership and support to the National PAD Campaign.

We are currently preparing for the AARP meeting in October, where a VDF board member will present current information on PAD.  We will also participate in upcoming meetings including the AHA and Veith Symposium.

We are redesigning our website with a new logo, and new functionality. 

We will continue providing public information via the newsletter, articles, and website. 

Opportunities to Support the VDF

The VDF needs the support of professional organizations and individual volunteers to carry out our mission.  Opportunities to help include:

Volunteering for a PAD Coalition Committee.

Writing and editing newsletter articles.

Writing or editing content for the website (Next segments are specifically on DVT and Varicose Veins.)

Helping to answer general email patient queries.

If you are willing to volunteer on any of these projects, please contact Sheryl Benjamin, Executive Director, at (303) 949-8337 or at email Sheryl.Benjamin@vdf.org.  

Our free newsletter, Keeping in Circulation, has doubled its circulation in 2002 and increased from two issues per year to four.  The focus broadened to cover topics related to all vascular diseases and related health issues.  Each issue includes new series such as “A Daily Dose of Walking,”  "Spotlight on Sponsors" and first-hand patient stories.   Our circulation numbers passed 6,000 individual subscribers and many vascular specialists in clinics and waiting rooms request additional copies.

Peripheral Arterial Disease (PAD) has been the initial and main focus of the VDF with the goal to increasing public awareness to improve prevention, diagnosis and comprehensive treatment of patients with claudication and critical limb ischemia. Ideally, long-term public education for any common disease is best performed by bringing together groups and organizations concerned with the same cause.  In 2003 the VDF achieved significant success by bringing together a large number of national organizations and societies with the aim to organize a national PAD awareness campaign.

A national PAD public awareness campaign

Rationale

Over eight million people in the U.S. have peripheral arterial disease (PAD) impacting their morbidity, mortality and quality of life.  Its prevalence increases steadily with advancing age.   3% of those age 40-59 are affected, 8% for 60-69 and 19% for those 70 years or older.   Studies indicate that up to 5% of men and 2.5% of women 60 years or older have symptoms of intermittent claudication (pain when walking due to a clogged artery).  With the rapid increase of the nation's elderly population, the existence of PAD will only become more widespread in the general public.

Although PAD is common, morbid, and deadly and yet the American public remains relatively uninformed of this disease. It is crucial that the general public learns more about the risk-factors, diagnosis, and treatment options of PAD.  Early awareness and treatment can reduce the costs of health care and improve the quality of life.  The goal of a national campagne is to improve public recognition of PAD, and thus improve care.

The Need

Increasing awareness about PAD is critical for the following reasons:

1. PAD is a disease that progresses slowly over one's lifetime and many have the disease without obvious limb symptoms.  Most patients are diagnosed only after the symptoms have become disabling.   Early detection means that treatment can include lifestyle changes (exercise and weight loss), preventive measures (smoking cessation) as well as pharmacological, endovascular, and surgical interventions in order to diminish rate of myocardial infarction, stroke, amputation (over 100,000 people each year), and death.
2. Many individuals are unaware how critical the disease is to their short-term and long-term health.  Those diagnosed with PAD have a significantly increased risk for development of major cardiovascular complications including heart attack and stroke.  The risk of a person with PAD having a heart attack is as much as six times higher than normal, depending on the severity of PAD.  Mortality rates are 3 times higher for patients with PAD as compared to those without.  
3.  The general public is unaware of how to prevent the disease and the medications and treatments available for improved management of PAD.
         

VDF and the National Heart, Lung, and Blood Institute (NHLBI)

It is the philosophy of the VDF that ideal long-term public education for any common disease is best performed in collaboration with the NHLBI and its Healthy People 2010 programs.  Over the past year, we have succeeded in hosting on January 15-16, 2003, a Strategic Planning Meeting with the NHLBI.  Almost 50 individuals from 17 organizations  participated and concurred that the meeting was productive and will serve as a realistic step forward toward achieving the national vascular public educational consensus that will serve as a milestone of what an inspired, broad-based vascular coalition can accomplish. Initial results of this meeting included a summary report published by the NHLBI in May 2003 (http://www.nhlbi.nih.gov/health/prof/heart/other/pad_sum.pdf ).  As well, Alan Hirsch and the VDF Board has co-authored a manuscript (“The Mandate for Creation of a National PAD Public Awareness Program: An Opportunity to Improve Cardiovascular Health”) that was published in the Journal for Vascular Surgery.

The Plan of the PAD Campaign

 The PAD Public Education Meeting and, along with the published report and associated background manuscript, have created the template that we will use to create a unified national PAD Awareness Campaign.  Under the umbrella of the VDF a PAD Council will take charge in developing a multi-year plan to initiate a PAD Public Awareness Campaign, that will be inclusive of the NHLBI and all organizations interested in participating.  The PAD Council intends to create a public awareness campaign so that PAD is recognized by the general public and by the health care community as a disabling and deadly disease for which the quality of life and the longevity of affected individuals can be improved through increased education, prevention, prompt diagnosis, comprehensive treatment and effective rehabilitation. The campaign is to include simple messages that will be supported and advanced by all PAD Council members.  The campaign will include various media to enable the message to reach the intended audience of those at risk for developing PAD.

Vascular Disease Foundation
Board of Directors
2004 
                                                                

Ad Hoc Board Member: David Faxon, MD Chicago, IL
(Special Liaison from American Heart Association)