Paul's Heart

Defeating Cancer As A Team

This evening, I was invited to give a speech at the Naples Relay For Life Team Party.  Tonight was about preparing all the teams for their big night coming up.  I was asked to give a speech on survivorship.  For those that would like to see the actual transcript, here it is (sorry, no video tonight due to technical problems):

“One of the best compliments a captain or the manager of a professional sports team can receive is not just by winning a championship, or by how the team earned the championship, or even when its championship design is duplicated and imitated by other teams, but rather when every participant of his or her team, come together with one common goal, completely unified, focused on the task to be done, actually makes it happen. The west coast offense of the San Francisco 49ers football team. The stifling trap defense of the Florida Panthers hockey team. And then of course there are the endless resources strategy of the New York Yankees baseball team. Winning teams know how to do just that, win.

The Relay For Life may never get the status of a professional sports endorsement but there is definitely no greater effort put out by anyone, than those involved with the Relay For Life, and the teams that raise funds and awareness every year, in every city. The success of Relays over the decades has made a difference and gives each and every cancer survivor hope for the future.

Dr. Gordon “Gordy” Klatt of Tacoma, Washington is credited with a novel team concept for fundraising that began with a simple and modest 24 hour effort originally called the City of Destiny Classic Run Against Cancer in 1985. Friends, family, and other supporters donated $27,000 while Gordy ran and walked over 80 miles around the track at the University of Puget Sound for 24 hours on his own. Just as in professional sports, the concept that originally began the Relay has resulted in something much more meaningful that all of the professional sports trophies combined. The following year, 1986, 19 teams participated in the first Relay For Life, which today nationally has raised more than 5 billion dollars to go towards cancer research and support programs. Dr. Klatt lost his life this past August from heart failure while battling of all things, cancer. But if anyone proved that one person could make a difference, Dr. Klatt was that one person.

The American Cancer Society proclaims a cancer patient a survivor from the moment that a patient is diagnosed. So, with that, I would like to share with you, another successful game plan that I hope will leave everyone inspired and believe that long term cancer survivorship can be achieved.

If anyone knows about success, it is my team. Now if you notice, I did not say that “I” knew about success. Last week, to the day, I became a 25 year cancer survivor of Hodgkin’s Lymphoma. But I clearly did not get to this point in my life alone. Combining strategies professional sports teams like the Yankees, the 49ers, and the Panthers use, my team was formed in November of 1988 in a small hospital in Bethlehem, PA.

I had my faith which admittedly had been shaken with my diagnosis and once the shock had worn off I reaffirmed what was going to be the foundation of my survival.

I had the best role model for beating cancer in knowing the first person in my life, famous or not to have survived cancer, my grandmother.

I made sure that I was being taken care of by the best staff assembled, and by best, I do not mean from the biggest hospital networks with the biggest superstars or best touchdown percentages. I had to feel and believe that those treating me, had every interest in seeing me in remission as a human being, not just as a statistical goal. From the oncologist, to the nurse, to the technicians, to the emotional support, I actually had made several changes in my care until I was confident in my prognosis.

In the stands, were all of my family, my friends, and my co-workers. For most, I was their first exposure to knowing someone who had cancer. And up until my diagnosis, they also knew only that people died from cancer.

And then of course there was the challenge itself. But one thing that I made known from the beginning, I was not only going to beat cancer, but the team that had been put together, I was not only a team member, but I was the team captain, the head coach, the manager. I was going to be as much of a part of the decision making process as the doctors involved.

Then came my championship moment, getting to hear the words “you are in remission.” But just as a professional sports team wants to return and repeat as a champion, so is the life of a cancer survivor. From the word remission, we want to hear “still in remission” year after year. And for teams to maintain that championship caliber, adjustments need to be made, year after year. The frequency and dramatic level of the changes vary from year to year, and personnel will most likely also change. And not every game is won. Cancer has not been kind to my family as I have lost 5 immediate family members to cancer, and said goodbye to well over a hundred friends who lost their battle to cancer. And I have also had my challenges throughout my survival, physically, emotionally, financially, relationships, employment, but one thing has remained constant. I will not let anyone take away from me, what I have accomplished over the last 25 years. I have not become a long term cancer survivor just to give up, EVER.

The fact is that I am constantly encouraged to go on not only from my current doctor who wants me to “ be a grandfather” someday, but to the hundreds of cancer survivors I have met with a longevity more than twice as long as mine. Yes, even a 25 year survivor needs to be, and can be inspired by others.

The only change to my strategy came when I decided to add two very important members to my team. I was blessed to become a father to two beautiful girls. They are now my driving force to continue on. And if anyone thinks I was difficult to deal with before because of my tenacity, my daughters are my world and I know how much I mean to them. I live for them. They never knew me as a cancer patient, and I was fortunate to never hear them ask, “is Daddy going to die” just because I had cancer.

Today, because of research and progress, with the help especially of the Relay For Life, my daughters will only have heard that at one time cancer was unstoppable, a long, long time ago. Today, my daughters know only that Daddy survived cancer. And they are proud of that. When involved in fundraising projects, in seeking benefactors, their recommendation is always to someone battling cancer, or specifically Hodgkin’s Lymphoma because they want others to share the same success that I have lived.

Teams are successful, and repeat success with one simple action, believing in it. See it. Feel it. Live it. And believe it. And just as each successful team takes one game at a time, take each day at a time. When you look back, it will already have been a week, then a month, then a year, then a decade, and more.

I am not a professional franchise or a professional athlete. I am just a normal person, who had cancer. And I do not think that it is necessary for someone to be famous to be inspiring when we just want and need to know someone who has beaten cancer, like I have done. Beating cancer is not about how much money you have or how famous you are, it is about what you have inside of you, and using every ounce of your being, to one day, be a long term cancer survivor.

I will wrap up with a quote that I use frequently through various support web sites that I am involved with:

“As I drive on the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me. And if for some reason, you are not on that road yet, hurry up and get on that highway. It’s a great ride once you hit the road.”

Defending The Affordable Care Act…For The Most Part

With the title of this post, I need to address the immediate thoughts.  This post has absolutely nothing to do with politics.  It will not be a criticism of our President by referencing the Affordable Care Act as “Obamacare” which purely is used to infer political intentions.  I do not personally care for anyone representing either of our two major political parties, especially when it comes to the issue of health care because neither has done enough, or even anything at all.

There is something inherently wrong with a country that we claim to be the greatest in the world, yet in spite of the Affordable Care Act, so many are still facing hurdles to not only get the insurance they are required to carry by law, but also get the medical attention that is needed.

In 1973, the Health Maintenance Act was created, to attempt to reel in health care costs by controlling the caregivers you saw, needing a referral to see any kind of specialist, and to get any important testing done for diagnostic purposes and if needed, treatments.  Simply, your main doctor contracted with the insurance organization to follow the company’s practices.  In other words, take the care decisions away from the doctors seeing the patients, and instead put all the decisions in the hands of pen-pushers making decisions based on a manual without even seeing the patient.  While providing a cheaper alternative to health insurance, one has to wonder, the ultimate price that is paid when facing a critical issue such as cancer, where timing is critical and any delay by having to go through a lengthy appeal process could make the difference between cure and death.

The fact is, four decades later, we are no better off in providing the quality health care to every citizen.  Whereas a single payer system would guarantee at least access to all levels of care, instead, political parties on both sides up until a year ago did anything to go forward.  And while one side wants to take away the progress (over 50 attempts to repeal the law), the other side has not done enough to make the Affordable Care Act live up to its name.  Out of pocket costs still are out of control and often result in placing a patient between bankruptcy or death.  And prescription costs?  Do not even get me started with big Pharm’s clear abuse of power, providing the medicines we need to live.

But while we continue to struggle to provide health coverage to everyone, our country spends too much time, ridiculing the president, the Affordable Care Act, and yet, no one is offering a better solution.  Many feel that it would be better to revert back to providing no coverage which clearly is not acceptable for a civilized country as ours, or at least we claim to be.  I have run into so many people who have had issues with the Affordable Care Act, or at least that is what they have been led to believe as the cause of their ills in pursuing care.  What does not help is health care providers, insurance carriers, and others constantly slam the Affordable Care Act, and they may do it subtly or blatant (usually the ones that are blatant clearly are exercising their political objections to the act and nothing more).

But if there is one reason, and one reason alone that the Affordable Care Act needs to be left alone, it is for the simple fact, that no one, NO ONE, can be turned away for a pre-existing condition.  This is a fact, at some point, nearly every one of us will have a health issue that is deemed a “pre-existing” condition.

In 1988, when I was first diagnosed with my Hodgkin’s Lymphoma, my employer did something extraordinary.  He wanted to make sure that I was able to get the best care to treat my cancer.  He did not need a law to do it, he wanted to do it.  As a man who appreciated and cared about his workers, he felt it was the right thing to do.  You see, my current plan, would have dictated where I could have been treated for my cancer.  So, my employer bumped up everyone’s health plan to the next tier, to take the decision making ability away from the insurance company and instead, let the doctors be the doctors.  Let the doctors determine what care I needed, and where the best care could be found.  I could go as far as to say, this just might by the main reason I get to stake my claim as a 25-year cancer survivor.

I would face a period with a new employer, where I was not insurable, due to my pre-existing cancer condition.  And then in 1997, I ended up working for a company that provided mandatory group coverage.  Of course, we had one of the best plans which was critical as I would be faced with many health issues, all tied to my days being treated for cancer.

After losing my job last year, I found myself in the position of needing the one part of the law I feel is critical, that I cannot be turned down for any pre-existing condition.  You see, today, I not only have cancer, but I have various cardiac, pulmonary, spinal, muscular, immunological, gastro-intestinal, and more issues, and without access to health care, I would die.

But whereas the ACA has now made insuring everyone possible, not everyone has been able to just yet.  And there still seems to be issues with people getting access to the care they need even if they have insurance.  Critical options are still not available to everyone and this is a major flaw in the ACA being denied the best options available when facing a terminal prognosis such as a clinical trial.

And what about those who need assistance to pay for their insurance.  A patient can find a non-profit organization to subsidize the insurance premiums, but the insurance company can have a payment policy in place that prevents the non-profit from being able to make the payment, and the patient, who has no source of income otherwise, remains without health insurance.  Technically, the patient was allowed to apply for insurance, and though payment was guaranteed through the non-profit, the method of payment was not accepted by the insurance company.

This year, those who have not been able to get insurance yet through the ACA, will now face the penalty phase.  Whether it was an active choice not to get covered, or circumstances that led to the lack of coverage, fines will now be imposed at tax-time on your returns for not having coverage.  There are all kinds of problems with this ideology.  Taking the example of the non-profit above, the patient will now be penalized because the insurance company will not accept the method of payment, which clearly is not the patient’s fault.

The fine will be either $95 or 1% of your income.  For many, not carrying the insurance which for a single payer can be as much as $700 per month, clearly it becomes worth the $95 fine or more.  The math is simple, if you make less than $9500 per year, your “fine” will be $95, but above $9500 your “fine” will be 1% of your income.  But one of the factors that is not considered, the IRS will only look at your income, not your circumstances…unemployed, spousal or child support, or any other extra financial burden.  You see, depending on the plan you select, you are still going to be restricted from the care you need.  You cannot be turned down if you go to an emergency room, but clearly, extreme methods and quality of care may just be lacking, because of the insurance issue.  And this is where the ACA fails, it does not provide everyone with the best medical care when it is needed.  But the ACA is better than having nothing because it was at least a direction of moving forward, not one of doing nothing as many of our previous government officials failed to provide.

Bottom line, if you have a problem with the Affordable Care Act, the solution is not repealing it because it is completely wrong to take away the forward progress of the coverage of millions of uninsured, and otherwise uninsurable.  Each and every one of us should have access to the same coverage and care as each of our elected officials.  And no matter what, our doctors should be left alone to be doctors.  They are the ones in the trenches who are physically with the patient, can relate the testing results, and witness the progress of the treatments.  But for now, when it comes to health care, the main priority remains not providing the coverage and care, but protecting the profits of the insurance companies and the pharmaceutical industry.  You will not convince me any differently.