Raising awareness about vascular disease with Joe Theismann
Yes, yes, yes! Love it that football great Joe Theismann is helping raise awareness about AAA through an organization called AAAneurysm Outreach, and I am not referring to the AAA you call when you have a flat tire or need a jump. AAA is an abdominal aortic aneurysm, a widening of the body’s main blood vessel, the aorta, that distributes blood to the whole body. If the aorta grows too large, the risk of rupture increases markedly and can result in sudden death.
The problem is that too few people know about AAA and about other vascular diseases in general. Take the example of PAD, also known as peripheral artery disease. More than 7 million adults in the US have PAD, affecting many more individuals than better-recognized diseases, such as Lou Gehrig’s disease, multiple sclerosis, or many cancers. What is PAD? PAD results from blockages in the blood vessels in the lower extremities due to plaque and cholesterol accumulation leading to inadequate blood flow to the legs. As a result, patients can develop leg muscle pain with walking (like ‘angina’ in the legs), ulcers, gangrene, and can even require leg amputation. It’s a major problem in the US, made worse by co-existent diabetes, and not enough people are talking about it.
But let me tell you who is talking – the Vascular Disease Foundation. This past weekend, the VDF held their annual meeting bringing together doctors, nurses, industry representatives, and other stakeholders to further a singular goal – to get the word out about these serious and often fatal diseases, including PAD, AAA, DVT (deep vein thrombosis), PE (pulmonary embolism), and more. Through the work of two major coalitions (the PAD Coalition and the Venous Disease Coalition) under the VDF umbrella, the foundation has spearheaded many awareness initiatives including:
- Keeping in Circulation® – a magazine spreading the word about vascular disease
- “This is Serious,” a national campaign to drive awareness and action around vascular disease in women in collaboration with Spirit of Women and the Centers for Disease Control
- VTE Toolkit
- PAD Exercise Training Toolkit
- Radio campaign about PAD and its consequences (aired more than 52,000 times on 350 nationwide radio stations)
- National PAD Public Awareness Program
But there is much more work to be done. We need to raise awareness not only about the what these diseases are, but also about the research that is being done to better understand these diseases, their risk factors, and their treatments.
My talk highlighted challenges and opportunities for creating synergy between vascular research and public awareness. Here’s the summary of my view of the three major challenges facing vascular research today and the opportunities we have to address these issues:
Challenge #1: We need to do better at getting the word out.
The truth is we are dependent on the media to get the message out. The media is well-intentioned but it’s an imperfect process. Messages are often biased towards sensational findings. Later studies that show attenuated results or that refute the original research may not even make it into the lay press. Messages are often confusing. Is exercise good for you or not? Should I have surgery or a stent or just take medicines for that blockage in my carotid artery? We need to do a better job working with the media to get the word in a balanced and comprehensive manner about vascular disease research.
Challenge #2: We need help getting the research done.
Apart from funding (see Challenge #3…), patient recruitment remains one of the greatest challenges we face in clinical research. Physicians say they don’t have the time, information, or resources to help recruit their patients for clinical trials. Patients are willing. They enjoy participating, feel that they get excellent care, and even say they would willingly recommend participation in research to their family members. But the majority say they have never been informed by their doctors about available research studies. We need to make it easier for physicians and patients alike. We need to organize an easily accessible repository of clinical trial information. We need to incorporate research opportunities into our educational efforts. We need to take advantage of new electronic medical records to flag potential research candidates as the University of Pennsylvania has done. We need to make it easier to get vascular research done.
Challenge #3: We need money.
Let’s be honest. We need money to do the research, and we need money to raise awareness, not just about vascular diseases but about vascular research. Vote, talk to your elected officials, raise awareness about the need for more research dollars, donate. The more we have, the more we can do.
Cardiovascular disease remains a huge problem. Heart disease is the #1 killer in the US. Stroke is the #4 killer and a major cause of longterm disability. Blood clots and aneurysms remain silent killers. We need to raise awareness and let them be silent no longer.