From the archives …
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Over the past too many days many people have chimed in on, lamented about, blamed everyone but Santa Claus, and those we elected to govern has shut down our government. Why? There is the normal budget issues which reasonable people should be able to negotiate. But what it the leverage being used? A LAW officially known as the Affordable Care Act. This is one of those “do you remember where you were when” things for me. It was nearly midnight on March 21, 2010. I was lying in an intensive care bed, not knowing whether or not I would even live long enough to see it implemented. And as I watched our government at work, as the debate proceeded, a vote was taken, and the law was enacted, I am not ashamed to say that I got pretty teary. I was proud to be a part of the time when the greatest country in the world could understand that to have healthy citizens, affordable health care is foundational. And I realized that if I did survive, the passage of that law could be an important part of my life going forward.
As it has proved to be. The already in place provision of not being able to be declined coverage because of a pre-existing conditions has already saved me. When my employer at the time determined that someone who may die of organ failure was not fit to do his job any longer, sending me away after 20+ years, my insurance went as well. But not so fast…my wife still worked at the same place and I was able to be put under her insurance. After my transplant, and a lot of insurance dollars after that, the same organization found a rather vulgar way to remove her from the employment and their insurance . But dang, we bought COBRA and I was still covered. We moved to Tennessee, Sandra obtained employment at Vanderbilt University, and again insurance was issued with no questions asked. Now Sandra has been swept up in the Vanderbilt down-sizing, and my life sustaining insurance is threatened. But again COBRA is there, and when the next opportunity arrives, I know I cannot be denied coverage. My post-transplant life will remain insured – and whatever happens in the future, such as the current concerns about kidney function, will be as well.
I ask all of you affected by organ donation and transplantation: whether you are a recipient, waiting on a list, the family member of someone on that list, the family member of a donor, or one of the wonderful advocates for this wonderful Gift of Life, where are you in this conversation? Our government is being shut down by a group of people who want to eliminate a law of the land that provides for the equal protection of affordable health care for all. All of who are fortunate enough to have received a donated organ know far too well the costs involved in all phases. For most of us the post-transplant medication would be completely unaffordable. For those waiting, the same is true. Expensive meds, treatment, hospitalizations. Unless you are in the category of Steve Jobs, it’s out of the question, financially. Don’t forget that financial suitability is one of the factors looked closely at by those deciding which patients will, or will not, be listed for transplant. We need to speak out. For us, for our children, for others who are chronically ill or experience a sudden illness or accident – we all have something in common – we know better than a majority of those speaking out against the Affordable Care Act what it actually like being sick. For those of us who have worked in pediatric acute care environments, do we not realize that most preemies we save, most congenital heart kids we save, most pulmonary kids that are still with us, not to mention the pediatric oncology population, are all being given pre-existing conditions along with their lives? Their suffering as children make be eased. In so doing, should it be then be that once they hit age 18 they can no longer have the health care that has brought them that far?
We are a group who advocate tirelessly for organ donation and awareness. I see tweets and posts everyday telling people to register as donors to save a life. We point out the growing numbers of those on the waiting list. All of us are thrilled to tell our stories, thank our donors, reach out to educate all in an effort to increase organ/tissue donation. We point out the problems of people not understanding or taking the short period of time to register. Real problems. But I don’t think any of us would see as a solution making receiving a life saving donation so expensive so that only the people in Congress trying to block the law of the land could afford such a procedure. If indeed this were true, it would most certainly reduce the waiting lists numbers.
NOT THE ANSWER. Please, let’s lend some of our advocacy energy to letting the right folks know that the Affordable Care Act is a law to save lives. We have been given a second chance to live. It is now our obligation to our donors to do something with our gifts. PLEASE SPEAK OUT! This is not about certain folks political lives, this is about our, those on the waiting lists, and those who will need to be real lives. Argue about budget issues, the debt, partisan politics, whatever needs to be discussed. But we, as the Organ and Tissue Donation Community are witnesses to true generosity, compassion, and care for our neighbors. A few months ago, President Obama presented the Presidential Citizens Medal. And in his address he stated: “…these folks participate, they get involved, they have a point of view, they don’t just wait for somebody else to do something, they go out there and do it…In this country, we look out for one another. We’ve got each other’s backs, especially in times or hardship or challenge…” Is that not what our donors did for us? Is that not what we’re asking others to do in our advocacy? Again, please speak out. Tell you Representatives and your Senators, your neighbors, and your DMV’s, everyone – the Affordable Health Care Act is not the work of the devil – it is the work, the necessary work, of a country that promises freedom and equality to all.
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