My last post was titled Love And Loss. This one won't quite as uplifting. Many will find it to be political, but that isn't my intention. I'm only sharing my own experience, but I find now that my experience only confirms my long held beliefs.
I am thrilled that I have readers of this blog around the world. If you live in the U.K., or Portugal, or Germany, or Australia, or any one of a number of other countries where this blog is read, you are likely to shake your heads as I describe what it's like in the U.S. when it comes to health coverage, especially for people like me.
This post won't be funny or spiritual, but it is about my cancer journey. Coverage for treatment is a huge part of that, and today is the day I need to write about it.
You may think that what I'm about to say reveals something about my political beliefs, and you may be right. But I have friends of all political stripes who have found themselves in much the same position as I am in now, and they took advantage of the same type of help that I'm getting. For the moment, anyway.
I've long had beliefs about what kind of health care system I think we should have in the United States, but since I've always been so healthy until recently, I've rarely had much experience with the health care system. For most of my adult life, I didn't have health insurance, being a self employed musician. Or even before that, when I worked for companies that were too small to provide it. But I didn't need it, because I never really needed to go to the doctor.
Providentially, right about the time when health insurance became required by law, my cancer started. Because I live in a state that implemented the Affordable Care Act the way it was intended, with our own state health care exchange, we received a subsidy to help us pay our premiums. In 2014 and 2015, we made too much money to qualify for the Medicaid expansion, which is supposed to cover everyone below a certain income level. But it's only available if you live in a state that accepted that money from the federal government. Because our income was deemed too high, we had to buy the cheapest insurance with the highest deductible. It was all we could afford.
When I was diagnosed with inoperable, aggressive prostate cancer in 2015, my deductible was $6,000. Even with my biopsy, MRI, and bone scan, along with my first Lupron shot and other treatment and appointments, I never hit that number. All of my medical costs for last year came out of pocket. A radiation treatment I was seeking was not covered by my insurance.
Thankfully, we had help. Because of the generosity of loved ones, and a GoFundMe campaign that exceeded its goal, we were able to pay my medical expenses, and pay our bills for about seven months.
But I don't think we should have had to ask for that help. I don't think anyone should have to avoid going to the doctor because they're afraid of what it will cost. That was my life for decades.
This year, because of the fact that I make very little, and my business runs at a substantial loss when you take all of our expenses into account, my wife and I both qualified for the Medicaid expansion. That was huge for us. No deductible, no premiums, and very minimal copays. Like one or two dollars. 100% coverage. It's a great deal.
There are limits. Many practitioners don't accept Medicaid. Some who do only see Medicaid patients on certain days. But I've been very happy with everyone I've seen. My oncologist, radiation oncologist, therapist, and nutritionist are all great. All of my doctors work "for the man," so they don't make more money by recommending any particular treatment. So I feel like their recommendations are coming from the right place. They're recommending treatments based on what they think is best for me, not what's best for their bottom line.
This is how health care should be, in my opinion. Great doctors giving their patients the best care regardless of how well they're reimbursed. And they're not reimbursed well by Medicaid, from what I hear. That makes me admire them all the more.
But Monday, I was notified that my Medicaid coverage will expire at the end of May, because the Department Of Labor thinks I make more money than I do. So my wife had to spend hours after she got home from work generating a profit and loss statement that I could fax over to the local field office to prove that, in fact, I've taken a loss from January to April. Hopefully that will fix the problem, and our coverage will remain intact. I have an appointment with my oncologist on June 7th. If I don't have coverage, I'll have to cancel that appointment.
Here's the problem now. I'm being very transparent here. It's not pretty. If we lose our Medicaid coverage, we will end up with another high deductible, along with monthly premiums that we can't afford. We have already received so much financial help that I don't feel like we can ask for more. I won't be able to continue treatment of any kind.
You do the math. Without treatment, barring a miracle, I won't be here much longer. Simple as that.
It's true that if I asked for more help, there are those who would give it to us. But my point is, I shouldn't have to ask. No one should.
Here's the dirty secret about the for profit health care system in the United States, especially in regard to cancer. There is much more money to made from cancer treatment than from a cure. Pharmaceutical companies spend the vast majority of their cancer research on treatment, rather than finding a cure. There's no money in a cure. On the other hand, there is a huge, profitable industry devoted to cancer treatment. Again, you do the math.
There are natural treatments that hold great promise for a cure, but no research money is devoted to them. For instance, there is significant anecdotal evidence to show that injections of Vitamin C can cure cancer. But no drug company will put money into research on it, because in the U.S., you can't patent a naturally occurring chemical. So they can't make money on it for their stockholders.
I won't even go into the whole private insurance part of this, except to say that insurance will only pay for "standard" medical care. If I decide I want to try those Vitamin C injections to try to cure me, I have to pay for that out of pocket. I don't think that's right, either.
To me, this is an immoral system. Any system that places profits over health is immoral. Any system that has a profit motive to keep us sick and on drugs is an immoral system, in my opinion.
This is not the place to go into detail about how I think the system should be changed. If you'd like to have a private discussion with me about that, I'm loaded for bear. Suffice it to say that I think everyone should be able to expect medical care without cost like we can expect the fire department to come when our house is on fire, or police services when we're the victim of a crime. It seems to me that a not for profit system is the only way to do that.
Don't get me wrong. I am a capitalist. I couldn't have made a living as a self employed entrepreneur since 1988 if I wasn't. I just think that some things should exist as a public service, and medical care should be one of those things. Like public schools and the military. Like roads and sewers. We all pay for those things with our taxes, and they benefit all of us. I think medical care should be treated that way as well.
So my long held belief in the need for a system where everyone is covered, and profit is not an issue has been proved true in my life. With such a system, I wouldn't need to buy insurance, or cover a high deductible. Neither would you. Insurance and premium medical care would still be available for those who can afford it. But for the rest of us, we wouldn't have to decide between getting treatment and paying our mortgage. In the richest, most powerful nation on earth, that should not be an issue.
As long as I have Medicaid, I can afford the treatment I need. If I have to pay an insurance company, plus pay for all of my care because of a high deductible, my choices are either to rely on charity even more than I already am, or pay for my treatment out of pocket and risk losing everything I've worked for, or refusing treatment and just trusting God.
Given those choices, I would probably opt for trusting God for everything, including my life. But my loved ones wouldn't want that. They'd want me to keep relying on charity. Even the ones who are providing it already. But my point remains the same. I shouldn't have to ask for that, and they shouldn't have to provide it.
Am I wrong to feel that, at age 61, with my career pretty much behind me, after a lifetime of contributing to the U.S. economy, and in my current state of health and financial need, that I should simply be taken care of at this point, without having to constantly jump through hoops to demonstrate my poverty? Am I wrong to think that my country should care whether I live or die?
I usually have some kind of scripture reference or spiritual point to make in my posts. But I'm coming up empty on this one, except for this brief point. What were two of Jesus' biggest priorities? Healing the sick, and taking care of the poor. If Christians want America to be a Christian nation, shouldn't our priorities more closely resemble his?
You may strongly disagree with what I've said here, but I'd be willing to bet that, if you do, you probably have good health insurance. You probably make enough money to cover your deductible. But if you've ever been in the position of needing Medicaid, you know exactly where I'm coming from.
Profit and loss. Their profit, my loss. Profit for some should not result in loss for others. Especially when financial profit results in loss of life. That's all I'm saying.