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Randy Broad: Voice of the Patient

Board Member, Randy Broad, speaks at House Minority Leader Nancy Pelosi (D-CA) Press Conference

Patient Empowerment Network Board Member, Randy Broad, was invited by Minority Leader Pelosi to the Capitol building to give a ‘Voice of the Patient’ presentation on the subject of continued coverage of pre-existing conditions. Above is a clip from Minority Leader Pelosi’s new conference on June 27, 2018. You can see the full conference on C-SPAN here.


Transcript:

Rep. Joe Kennedy III :

For many of us, battling lung cancer would be the ultimate fight for our lives. For Randy, that fight was just beginning. Now, he fights for every single patient who has had to confront what he did. We’re lucky to have Randy with us today.

Randy Broad:

Thank you, Congressman. 10 years ago, this last March, I went to bed that night just like everyone in this room who go to bed tonight. The next morning, I woke up in a coughing fit, and I coughed up blood and I knew something was obviously amiss. Called my doctor. Went in and within seven days I had been diagnosed with Stage 3 Small Cell Lung Cancer.

Being 52, businessman, a father of two teenage kids, and considered extremely low-risk for such, this came as quite a shock. Fortunately at the time, my company provided excellent healthcare for me and my employees.

During treatment, I was deemed inoperable and the post surgeon meeting I learned I had maybe a year, two tops, to live. Well, as you can imagine that had a pretty profound effect on my life. So, the first thing I did was sell my business and focus on my family. Now, I was faced with personal healthcare insurance and was now paying $1,000 a month with $1,000 deductible and a significant co-pay. But in a few years from there, came along The Affordable Care Act and this changed everything with how I was insured for my health care needs moving forward, both insuring access and treatment with financial protections. Needless to say, I slept better that night.

I joined the Washington state Health Care Exchange, called Apple Health. We grow apples. My insurance premiums were cut in half while maintaining the exact level of care and I was able to maintain and keep my existing treatment team, at Seattle Cancer Care Alliance, which I cannot even begin to tell you how huge that is.

With the recent rumblings here in Washington D.C. to abolish The ACA, me, along with 16 million other cancer patients alone are extremely concerned about maintaining our access to quality health care coverage. Especially, when it comes to pre-existing conditions which we will all have. Health care is the number one cause of bankruptcy in The United States. That probably doesn’t come as a surprise to too many people in this room. And it’s going to get worse as those of us who will forever have a pre-existing condition, can be discriminated against it.

With The ACA, we had begun to experience what patient-centered care can be like and truly means. We cannot go backwards. To what it was like before the protections for pre-existing conditions. And I request Congress to protect The ACA so it remains available to other patients like all of us and like yourselves now and in the future.

Thank you very much for having me here.

Finding the Right Care for You

Telling the Full Story

I’m a bit miffed at the moment. I was just on the cancer treatment center site where I received my care and the opening page reads in bold, “Ranked No. 5 in U.S. for Cancer Care”. Seriously, ‘No. 5’? It made me pause and think, why on earth would anyone want to be treated for something as severe as cancer by an organization claiming they’re ‘No. 5’?

Having gone through the experience of cancer treatment and knowing what I now know, I wouldn’t begin to consider being treated by ‘No. 5’. Fortunately for me I wasn’t, I was treated by ‘No. 1’. I was treated by subject Center that’s advertising ‘No. 5’, yet treated by same as ‘No. 1’? Confused?  Don’t because what I have to share is important to anyone diagnosed with cancer.

Cancer is complicated. Individuals diagnosed with the same type and stage is often different in symptoms, characteristics, and multiple treatment options from one patient to the next. There is no such thing as one size fits all when it comes to treating cancer. Thus you need to be cured by people who are qualified, knowledgeable, and above all, experienced. There are many moving parts in a cancer diagnosis; underneath, there’s a ticking clock.

For the record, I fired ‘No. 5’ following my diagnosis. They may officially be more like ‘No. 500’ but to me it didn’t matter, I knew they weren’t ‘No. 1’. During my initial visits, I met several of the team and didn’t like what I heard. Spare the details but trust had I stayed the course, doubtful you’d be reading this post. Determining your provider is literally a life and death decision, trust me.

Finding ‘No. 1’ requires research, networking, and a bit of luck. All applied in my case and I was fortunate to meet my oncologist. In the initial interviews, I brought along extra ears because you don’t hear every word the doctors communicate. Following the initial meeting with ‘No. 1’, my friend said, “You don’t need look further, he’s your guy.” I didn’t need the affirmation…but it helped.

I’m confident in every rated cancer center in the country there’s a ‘No. 1’ for a specific disease. Conversely there’s also a ‘No. 5’. So placing an overall rating or ‘quality #’ on the Center for validation of an overall one size fits all treatment is misleading. It is equivalent to rating a restaurant. They’re given ‘star’ ratings. You pretty much know what to expect given number of stars. However, when it comes to the food, some dishes are better than others with multiple chefs.

Randy and Renato MartinsThe point is you need to find a team of professionals knowledgeable about the recipe and how to bake it. The best way I know to accomplish is interview several, listen with a minimum of four ears, and make sure you are comfortable with the answers. If not, move on until you do. This is at the core of being an empowered patient and taking an active role in your healthcare. Something that is being stressed more and more as we move to a value based healthcare system.

‘No. 1’ he told me I would be treated with, ‘Intent to cure’. This is physician speak to get your mind thinking along the lines of living opposed to the alternative. What matters is treatment protocol and how adjustments are made along the way. In many cases what begins as a straightforward pathway quickly becomes finer tuned.

I was deemed operable following my first round of chemo. While on the table and wide open, I became ‘inoperable’ due to undetected infected lymph nodes. While splayed open like a gutted fish, my team of doctors debated best strategy for moving forward. Do we remove the lung, leave it, take out a portion, how long recovery from each, what next, etc.? Throughout they’re calculating potential outcome staying true to their objective of, ‘Intent to cure’. This is all transpiring real time while the anesthesiologist drip line keeps on trickling.

Making adjustments as new developments present themselves as described is not the work of a ‘No. 5’. It’s clear and straightforward, ‘No. 1’. Living proof is the most valid testimonial I’m aware of.

Before you put a label and a ranking on any organizations service, make sure you’re telling the full story. Not just what some independent association attaches from a myriad of data points. There’s a lot more under the hood than stating you’re ‘No. 5’ and posting for the general public. Personally, my Center, and more importantly the people within who treated me, is ‘No. 1’. That’s the bigger Story and one you can live by.