It Is Time To Come Together For The Sake of Life and Limb

As a patient advocate, I'm concerned that Life and Limb are in further jeopardy.

Media is being fed a skewed narrative about what is actually causing the number of PAD-related amputations to remain high, and it's unfortunately proving successful in influencing lawmakers and insurance companies, resulting in suboptimal life and limb-saving care for PAD patients.

In the last month...

UnitedHealthcare and Aetna, a CVS Health Company are making it tougher for CLI patients to get approval for limb-saving care in office-based labs. I have patients who are a toe stub away from amputation that have gotten a rejection for or delay of a potentially limb-saving procedure. Time is Tissue!!!!

I have had patients who are at toe stub away from amputation who refuse to go to a 'strip mall' doctor for evaluation (due to the articles) because they perform 'atherectomy', and instead go to a physician at a large nearby tertiary center who performed an amputation WITHOUT a proper vascular evaluation, only told 'diabetes' is the cause based on simply one consult.

And that's not even scratching the surface of what I've been presented with this summer.

But it's not the media's fault.

I get that painting the picture of a handful of doctors, whom federal regulators are already cracking down upon, is important for the public to know about.

But I can only imagine that if they knew the real story leading to the majority of amputations, they might see a more impactful life and limb-saving narrative worth covering.

Several key considerations:

• A few bad seeds being fined and hand-slapped by federal regulators is the exception to the rule... and that while it's important to call them out publicly, it's critical to not elude to the behavior of this handful of physicians, as representative of the majority.
• The bigger problem with PAD is the lack of early diagnosis and lack of vascular assessment prior to most amputations, which is why Congress is working on legislation, called the ARC Act. - Lack of early diagnosis: Primary care doctors might struggle to stay updated on recent research indicating that early diagnosis and referral to a vascular specialist, such as a Vascular Medicine Doctor, who can prescribe medication and recommend a walking routine, could potentially slow the progression of the disease. They may not be aware that amputation is no longer the first-line treatment for patients with toe wounds caused by poor circulation. Therefore, it is necessary for them to refer patients not only to podiatrists but also to vascular specialists who can evaluate and address issues related to poor blood flow. - Lack of vascular assessment: The biggest contributor to amputations is the more than 50% of ALL PAD-related amputations being performed WITHOUT a proper vascular evaluation, and even more go against the Society for Vascular Surgery and American Heart Association guidelines.
• While there are society guidelines suggesting a vascular evaluation and a flow restoration attempt, there are NO society guidelines that dictate exactly how many procedures is 'too many' when it comes to a physician's attempts to save a patient's leg. And you would never hear media call out an oncology doctor for offering experimental treatments or too many treatments to try and give a cancer patient just one more day to spend with their kids. So, why aren't CLI patients given that same respect?It's important to differentiate between the two types of PAD: Intermittant claudication and CLI.
• CLI is already deadlier than all cancers combined, except for lung cancer. And patients are at higher risk of death with an amputation. Amputation is a reality for 25% of patients in the first year of CLI diagnosis. So, any attempt for a CLI patient to save their leg helps them to walk to live and live to walk another day.
• There is a significant scarcity of vascular surgeons, with approximately one-third of hospitals currently advertising job vacancies for this specialized field. Additionally, numerous community hospitals are forced to utilize a single vascular surgeon across multiple facilities due to the limited availability. As a result, there exists a pressing demand for alternative medical practices that have pioneered endovascular techniques to help bridge the gaps in patient care.
• Due to the impact of Covid-19, medical facilities across the United States are experiencing a shortage of staff. This has resulted in a backlog of patients and created a necessity for office-based laboratories to provide efficient and prompt care for limb-saving procedures. During the height of the pandemic, I received calls from vascular surgeons at hospitals who were seeking nearby office-based labs, as their own were not available. If another pandemic occurs, these office-based labs will be critical alternative sources for timely, effective limb-saving CLI care.
• With any reimbursement option created to inspire the use of a new FDA cleared device whether for diagnostic or treatment, that there is ALWAYS a sudden increase in its use, and over time reimbursement is adjusted (which is being considered now by policy makers).
• No research has established a direct cause-and-effect connection between the utilization of atherectomy and amputation. In reality, certain studies indicate that when used as directed, it is not significantly more effective than traditional balloon methods, while other studies suggest that it may decrease the need for stents due to lower barometric balloon pressure. The outcomes differ depending on the skill and training of the operator. This article is worth a read to understand the benefits and limitations of atherectomy.

Not being presented with all of these critical facts, the media simply can only rely upon their friends in the space, along with retrospective data that aligns with their select narrative that stands to create the best headline, documented action by federal and state regulators, big name University Doctor interviews that people are already familiar with and respect, and one or two token patients, in order to write their story or series of stories.

It's understandable why the general media chooses a narrowed point of view since even those of us who are deeply involved in this field struggle to condense everything into 800 words or less!

Therefore, it becomes our responsibility to come together and help them grasp the true story behind these life-and-limb situations. We must show them how they can make a tangible difference in improving these patients' prognosis.

So, I propose a one-day virtual discussion where all stakeholders come together for the sake of our patients to educate interested media in the whole story, hosted by patients through The Way To My Heart .

Let's bring in independent moderators such as @todd berland, Peter Schneider , and lead PAD research Mary L. Yost to sit alongside important interested media such as @katie thomas (4) Katie Thomas | LinkedIn (4) Maya Miller | LinkedIn Annie W. as well as patients impacted from The Way To My Heart 's network, to ask questions of all stakeholders from lawmakers, to patients, to physicians, to researchers, to heads of all societies.

I want to see ALL OF THE BELOW COME TOGETHER IN ONE SESSION IN NEUTRAL TERRITORY TO ALIGN ON UNBIASED EDUCATION ON THE REALITY OF PAD TREATMENT:

OEIS Society President Bob Tahara, MD FACS FSVS DFOEIS RVT RPVI ,

Society for Vascular Surgery president Joseph Mills MD and Vice President of Quality Control Judith L. ,

CLI Global Society president Barry Katzen, MD ,

Association of Black Cardiologists, Inc. Foluso Fakorede

@Society of Interventional Radiology President Parag H. Patel, Society for Cardiovascular Angiography & Interventions President George Dangas , Researcher Caitlin Hicks

American Diabetes Association: Northern California CEO Charles “Chuck” Henderson

APMA board of trustee Dr. David B. Alper, DPM, FFPM RCPS (Glasg)

American Heart Association CEO Nancy Brown

ALPS (American Limb Preservation Society) Dr. David Armstrong

AMP founder Jihad A. Mustapha, MD, FACC, FSCAI

New Cardiovascular Horizons founder Craig Walker, MD

Those working with the Congressional PAD Caucus such as Representative Henry Cuellar and Senator Donald Pain.

And FDA's Misti Malone ...

So that NO ONE is talking behind the back of others, feeding information for personal gain and agendas without full context, or influencing policy without all perspectives offered.

Email me your availability during the months of October and November, weekends included so that we can get this scheduled soonest:

Kym@thewaytomyheart.org

or sign-up below:

Life and limb salvage MUST be collaborative.

A wise mentor once told me that it's easier to work WITH someone, than AGAINST them.

Let's save life and limb TOGETHER!

As Nurse Practitioner and PAD Warrior Kay Smith says publicly all the time, "PAD is PEOPLE" and they deserve to be treated as such, not pawns in a game of life and limb.

Pay attention to what PEOPLE say versus faceless data.

Watch our Save My Piggies, Patients Tell All conference from Saturday, and your eyes will be wide-open and mindset will be significantly change for the better, forever: