Paul's Heart

Life As A Dad, And A Survivor

Let’s Make A PACT For Cancer Survivors

I need to briefly mention a topic, which unfortunately is going to sound political, because of the current state at which it stands. But I have no choice, because the circumstances, rather conditions, can actually relate to cancer survivors.

I am of course referring to the PACT Act of 2022, also known as the Promise To Address Comprehensive Toxics Act of 2022, named after Sergeant First Class Heath Robinson. There is a lot covered in this bill, but the main crux of it, is that all military vets would have health care coverage for exposure to toxicities while serving in our forces. It is my understanding that this would even impact vets going back to the Vietnam War. Sounds like the right thing to do, right? Brave men and women of our country risk their lives not just from enemy fire, but various toxic exposures, that affect them the rest of their lives. We should want them taken care of, right?

Our government seemed to agree, as it went through the legislative process, the bill was introduced, passed through the House Of Representatives, and then passed the Senate. It should have been on its way to President Biden to be signed into law, and our vets would have been take care of. Instead, a procedure brought the bill back to the senate, where enough senators changed their “yea” votes to “nay,” causing the bill to stall. Hence, our vets are still left not being taken care of.

Bottom line, it is political games on both sides that caused this, and unfortunately we, are left to figure out who is telling the truth as to why. And while both side bicker, vets are dying; vets are continuing to get sick. In the short time since I started writing this post, the bill finally did pass, yet again, with an overwhelming majority as occurred originally. Please bare with me as the few days that recently passed, the result, taking care of our servicemen, is just one example, of doing what should have been done in the first place.

The solution is simple to this political gamesmanship… universal health care. Just like I stated as our health care system was rocked with the onset of Covid19. We learned just how valuable, a right, not a privilege, health care for all, just like nearly almost every industrialized and civilized country has, could have made a difference. The fight for our vets was no different. Every vet who has served, no matter when, should have coverage to assist their health care.

One of the key “beyond all doubt” issues of the PACT Act of 2022, is the presumption of service-connection. This means that for example, a vet who was exposed to the burn pits in Iraq, and develops lung cancer, it does not matter if he was a smoker, or worked in a quarry prior to his service in the military, the service-connection, his exposure to burn pits, closes the door to any fights that delay or deny treatments, getting the vet hopefully on the path to recovery. Sounds like a good thing, the right thing to do, no?

Enter a celebrity, former TV talk show host, comedian, and advocate, Jon Stewart. There are several around me personally who will chirp up constantly, “what business does a comedian have commenting on governmental affairs?” as if what he does for a living makes any of his statements less credible. But anyone who has followed Stewart over the years, knows that Stewart is well aware of the ins and outs of our government.

In June of 2019, Stewart found himself in front of a congressional committee, well, not really (due to a lack of representatives for the hearing who felt it was not important enough), to advocate for benefits for first responders of “9/11”. A similar situation, those who responded to one of our darkest days in history, were dying from exposure to the devastation at “ground zero” following the collapse of the twin towers in Manhattan. A similar situation, many first responders were left unable to get the medical help they needed, due to lack of insurance or other beaurocratic bullshit, getting sick, and dying. I say he was “not really” in front of the committee, because of the absence of so many representatives, who did not share the urgency or importance to attend the hearing themselves. Stewart would tell those representatives, “you should be ashamed of yourselves.” The brief history of the bill went like this: the original bill expired as planned in 2004, re-established in 2010, renewed in 2015. But by 2020, the funds were expected to be gone, without any further legislation.

Stewart’s goal, was to get a bill passed, to last 70 years, as many first responders were young enough, to live long enough to possibly reach their eighties and nineties, and likely developing issues related to their efforts on September 11th. The “Never Forget The Heroes Act” was eventually passed. Who knows where our first responders of 9/11 would be now if it were not for the advocacy of a “comedian.”

It took a long time to get to this point, but, if you have followed my blog for any length of time, you know I have a complicated health history. It is one that up until recent years, not many in medicine not only did not know about, but when faced with issues like mine, did not know how to diagnose them, or treat them. Like the situations mentioned above, the burn pits, and the rubble of Manhattan, causing late effects on the health of servicemen and first responders, cancer survivors, and if I am being specific, Hodgkin’s Lymphoma survivors can all too well relate to the situation of late effects.

Cancer survivors have really never been expected to live long. There is a popularized milestone of “five years,” a magical number, that if doctors were forced to say you actually beat a cancer, it is once you hit that five year mark. But for many Hodgkin’s survivors, we have lasted well past that five year mark, many of us into our third, fourth, and fifth decades. But just as servicemen and first responders developed issues over time from their exposure, we Hodgkin’s survivors developed issues over time, from the very treatments that put us into remission. The lousy thing is, back then, and just like originally the burn pits and ground zero, science was not prepared for and did not anticipate the health issues we all would face.

But where is our comedian coming to our aid, to be our voice, to advocate for our care, that we need to survive issues that have taken a toll on any number of our body systems whether cardiac, pulmonary, secondary cancers, you would not believe how long that list goes on. If it were not for fellow survivors, and one of the few good things about social media, we survivors would never have found each other, and given each other the support, and knowledge of our own experiences to each other, and continued to survive.

But where is our celebrity willing to speak up for us? There have been plenty of celebrities who have actually had Hodgkin’s Lymphoma (actor Michael C. Hall, pro hockey player Mario Lemieux just to name two). Sadly, as we hear about them, and we hope, “hey, now maybe a spotlight will be on us, and we can finally get the help we need.” Nope. Meh, we actually have an organization actually using the name Lymphoma in its title, the Leukemia and Lymphoma Society. You would think they would help out long term survivors at least with advocacy, if not for guidance and information. Nope. There are a number of other organizations in the cancer world, but none, really willing to take the megaphone like Stewart has done for both the servicemen and women, and first responders.

It was long term Hodgkin’s survivors who finally took the initiative on their own, to create our own organization, geared at survivorship. And because we are a group of people, in the hundreds, located all around the world, this group is appropriately called, “Hodgkin’s International.” But I am going to bet, that outside of my circle of survivors, and unless you have heard me refer to this organization before on this blog, you probably have not heard of that. Why is that?

So, as I said earlier, with some of my friends who object to celebrities chiming in for causes, excuse me for wanting someone to step up for me and my fellow survivors, help put a light on Hodgkin’s International. Help get us the medical care all of us need to continue to live our lives after cancer. Yes, this would be so much easier, if we could just have universal health care, and that would not just cover the servicemen and women, first responders, and cancer survivors as well as cancer patients. It is time to stop treating health care a privilege for only those who can afford it, and a right for us as human beings. It is time to take care of us, long term cancer survivors, for the things that happened to us, because we were treated and “cured” of our cancers.

“But wait, how much more is supposed to be spent on you? You got cured, how much more do you want and expect me to pay?” That was an actual comment made to me, and a topic for a different post.

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