Yesterday, as I write, three things converged that have left me feeling like I'm holding a crystal ball and I don't like the "future" I'm seeing.
First I opened my email. When a comment is left on this blog, I get an email notifying me and the comment is in the email. My good friend, Anonymous, had left a very nice remark after a post and it included these words, "Your words are always what is needed, be it balm or fire." We Methodists are rarely told we have words of "fire" but I like that! You know we do have the Cross and Flame thing going on and we are a Pentecostal people, so "fire" is appropriate and good. Plus, red is my favorite color and yesterday I had on my red glasses, red shirt, and red high tops. I was feeling it!
Second I logged on to Facebook to see what was happening and that's when I looked and found a crystal ball in my hands. The news from Australia wasn't good. At all! The bright spot was the people there were already talking of organizing to stop what the government had decided. I'll come back to that in just a moment. Hang on.
Third, that news from Australia prompted me to initiate what became a very good and insightful (for me anyways) discussion with a friend.
I've been turning this post over and over in my mind, praying over it, revising and editing it before ever sitting down to write it. But that time has come. Before I really get into this I feel a need to make something about myself perfectly clear: I'm an uninsured American with melanoma, stage 3b. I don't want anyone to read what follows and think I'm sitting pretty with great insurance coverage and a boat load of money in the bank, and am, therefore, unaffected. Nothing could be further from the truth. I don't like to talk about my finances and this paragraph is not up for discussion. It is what it is and what I say in this paragraph is all I'm going to say about my personal insurance, or lack, thereof. When I started this melanoma trek, I had great coverage. It had carried me through a nerve block and two rounds of physical therapy in 1999-2000 to deal with my RSD. When melanoma reared its head in 2008, my coverage saw me through my scans, surgeries and another two rounds of PT and bought my compression sleeves and gloves. I was dropped in late 2010 and am untouchable now. That's not a great place for a stage 3b melanoma person to find herself in. So, now, I pay out of pocket for what happens to me at Duke. So far, it has been appointments, blood work, and chest X-Rays. Manageable. When it becomes more than that, I'm going to have to seriously look at what I can and cannot afford. There isn't a boat load of money or a hefty savings account to tap and another loan is out of the question. The expensive treatments that exist for stage 4 will become quite a personal issue. I think that's why the news from Australia has hit so hard and why I feel like I'm holding a crystal ball. And I want to smash it. And then I want to glue it together and smash it again.
This is copied/pasted from the founder of sunbedban.com's Facebook page yesterday, "BREAKING NEWS Australia: The PBAC has knocked back funding for a
life-saving melanoma treatment. Patients from next week will now have to
pay $120,000 if they want this potentially life saving treatment called
YERVOY." He provides a link to the TV report of this but that link only works in Australia apparently. (PBAC=Pharmaceutical Benefits Advisory Committee). Jay Allen is a trusted source of information, is Australian and is there on the spot, is a melanoma survivor, and is working tirelessly getting tanning beds banned all over his country. And he is being successful, I might add!
Australia is known as The Melanoma Capital of the world. Not a good distinction to be sure. They, like other countries, are seeing a decline in other cancers and a spike in melanoma. Some doctors are beginning to say there is a melanoma epidemic now and it is on track for being the deadliest of all cancers, worldwide, by 2022. Yervoy is a fairly recent treatment and is showing great promise. It is also greatly expensive. That $120,000 is roughly what 4 doses cost. That's not pocket change for most people. And this event has me greatly alarmed. If Australia is taking this step, I can see other countries taking notice and following their lead, somehow, at some point in the future.
This will look differently in each country. Some countries may require some amount as a deposit before a person can take costly, potentially life saving treatments. If a patient can't come up with the money, then no treatment. That will mean certain death. In some countries, insurance companies call the shots right now. Those companies exist to make money. Melanoma drains money. I can see them dropping more and more clients as they advance to the later stages of the disease. I can also see some of them requiring larger and larger co-pays and raising the premiums once melanoma is diagnosed. In countries where insurance calls medical shots, I can see more and more people who need insurance having to drop it themselves because they can no longer afford it, becoming uninsured. Governments will get more and more involved in medical care, as we see happening in the USA. If there are any countries where medicine still gets to call the shots, doctors will be put, more and more, into uncomfortable positions because the resources are limited, melanoma is astronomical to treat, especially as it advances, and I can see them having to literally make life-and-death decisions for their patients. Does a patient get scans or surgery they can't afford? Are they a good candidate for $100,00+ treatments? I see a vicious Pandora's Box being opened and it scares the hell out of me.
To give you an idea of what melanoma costs, I refer you to this article. It was written in 2009, before the advent of Yervoy, Zelboraf, and other new treatments, but you'll get a good idea of the costs involved.
Then, there's the cost of research which makes all this possible. And that's not cheap, either. Melanoma does though get very few research dollars compared to other cancers. Researchers have done a great deal with so little. Read this article and scroll down to the table showing dollars spent. This is just one of a few entities that fund and carry out melanoma research, but you'll get an idea of what gets spent overall. This article will give you an idea of the overall cost of cancer. This is also interesting reading about why cancer costs so much and it does mention melanoma.
As melanoma soars, that's people soaring. Not just numbers. People. Maybe you. Maybe someone who is making decisions right now that will affect multitudes of people. Maybe someone kin to them. With the projections being what they are, and the ages getting lower and lower, few families will be left untouched. People making policies need to remember that.
As people soar, "entities" need to remember that it is people who soar. And entities, like government, insurance companies, and medicine, need to remember that they themselves really aren't "entities," they are people, too. Believe it or not, they are, indeed, people. They need to remember that. The policies they make, whether they be in government, insurance, or in medicine, will affect people. People who vote and purchase. People they live with and work with. People they see in the mirror.
People with pockets and many of those pockets are shallow. Few have deep enough pockets to absorb the costs. Right now we are faced with melanoma diagnoses rising through the roof (and side note: many new diagnoses are already stage 4 and arrive in melaworld already expensive to treat. They are scared, often young with young families, and guess what? They want to LIVE!). We are faced with rising costs of treatment. Yes, it's far cheaper to treat when caught early and yes we have GOT to do everything possible to come up with treatments that stop it in its tracks early, but we cannot do that at the expense of those of us further along this road. And we are faced with these rising costs being passed along to governments and/or insurance companies. Hospitals can only absorb so much of the costs if we want them to stay on top of the newest technologies and treatments.
So much is out of our hands! We, the patients, know what we want and need and someone else calls the shots. Many of the shots are based on costs and I fear melanoma patients, over the course of time, will become something of a triage. Medicine will save those who appear to be the best candidates and not save the rest. Because Australia made the decision they made yesterday, I really fear the road ahead as the road winds around the world. I see it getting worse before it gets better.
People will have to come up with large sums to stand a chance and those sums will be hard to come by. So I'm wondering if there's a way to prevent this? Is there a way for the powers that be around the world to come together, for the good of the people, and work together and not put profit above people?
Is there a way for research to stretch those dollars further? Is there a way for drug companies to hold down costs and hold down the costs they pass along to insurance companies? Is there a way for insurance companies to convince their stockholders that huge profits aren't in their best interests, but keeping costs down and people enrolled at affordable rates is more humanitarian and will serve them better in the end? Is there a way for medicine to be as effective but cheaper? Is there a way for governments to really give budgets a fair look and truly cut pork. Can government officials, for once, stop working to protect their own best interests, stop working to get elected and stay elected, stop working to make their "angels" and PACs happy...and do what's in the best interests of their country and its citizens?
Can these "entities" that make life and death decisions realize they are people who work with and for people? It has taken us a long time to get in this mess and I see no easy fixes on the horizon. There will be no one answer that makes billions of people happy and fits every situation.
Is there a way for research, medicine, insurance, and governments to work together with the good of the people in their hearts and minds? I'd like to think it's possible. But right now, to be honest, the thought of that happening makes me shake my head, laugh, and say it's impossible. Too much greed involved. Too much power up for grabs.
Too many lives at stake. And tied to the stake. Who's going to light the fire? Or who's going to step forward and start loosening the chains that bind them?
I don't like the potential I see looming on the horizon. I don't like the decisions that will have to be made and I don't like the idea of who could be making those decisions anymore than I like who already makes them.
Is there a balm? Yes, but it's not me. There is a Balm in Gilead.
Is there a fire? Yes, but it's not me. It speaks from a burning bush and it says, among other things, "I have certainly seen the oppression of my people...I have heard their cries of distress....Yes, I am aware of their suffering. So I have come down to rescue them...I will be with you...I AM WHO I AM." God has always proven Himself faithful to those who are oppressed and suffering. He always comes to the rescue and is with us. He is always I AM. Always present tense. Those words spoken to Moses thousands of years ago still hold true today.
It won't be easy, but it can happen. It will take time, but it has to begin now. We have to move toward our preferred future and it will be costly. We can break the crystal ball. Who will smash it?
God. God holds the world in His hands. There are those who think they do and they are jockeying for position. Humankind has a history of trying to wrest control from God. God has yet to fully let that happen. It hasn't happened yet. It will not and cannot happen. The tide will turn. We can work with God. Or not. God has a history of standing with the least, the last, and the lost. Those of us with melanoma and who will get melanoma fall in there somewhere.
He's got the whole world in His hands and that includes governments, insurance companies, medicine, and research. It's not the other way around.
And I am grateful.
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Thank you.