Do you want to guess how much my cancer care has cost since April 2016? I am going to let you mull that over for a while. I will reveal the answer by the end of this post.
My husband works for a company that generously offers us a pretty comprehensive insurance plan. It is not the best of the best, but compared to what most Americans have to deal with right now, we are privileged.
We do our part, too. We have always chosen to pay more for the best plan available to us. It is a hefty chunk of change out of every paycheck, but after the year we had, we recognize its value a thousand times over.
You may recall that back in June I wrote a blog post entitled, Dear Mr. Hemsley. In this post, I went a wee bit ham on our insurance company for not covering the cost of a wig. This blog post was viewed over 26,000 times and has been widely shared via various social media outlets.
When I wrote this blog, I was furious. How dare an insurance company deny us, as cancer patients, the basic dignity of having hair, an actual body part, just like fingers or toes? I wasn’t asking for a fabulous wig. I was fighting for any wig at all. And not even for me so much, as for all the thousands of women who cannot afford to purchase wigs who are forced to walk around bald, if they don’t want to, and have their self-esteem compromised on top of physical indignities.
My campaign worked. On July 15, I posted a blog updating everyone on my plight to get wig coverage in Dear Mr. Hemsley UPDATE. We won. I was told I could spend up to $2,000 on a wig.
What I subsequently found out is that my insurance company never technically denied me the wig. My husband’s employer did not have a clause for ‘cranial prosthesis’ coverage in their plan. Once my husband’s employer found out about my little post, they kindly adjusted their particular plan to cover it. They had just never had the issue come up and didn’t realize their plan was lacking.
I don’t regret making such a big stink because the core issue is real. As cancer patients we deserve to have our ‘cranial prostheses’ covered. Hair is a part of the body, period.
What I do regret is demonizing the insurance company and, by proxy, my husband’s business and let me tell you why…
Other than approximately 2 doctor visit co-pays a month ($20-$30 each) and about 5 prescription co-pays a month ($7-$35 each, totaling approximately $1200 for the span of my treatment), I have paid NOTHING for my extreme amount of medical care.
I have never, not once, received a bill for anything.
Think about that. The insurance that we whine about paying for, paid almost entirely for my extensive cancer treatment.
Our insurance does exactly what insurance is supposed to do.
We paid in for a long time with no major illnesses and then, when we needed it, it covered everything. How wonderful is that? It’s freaking incredible, if you ask me. The system worked.
But I am one of the very lucky ones who has private insurance provided through an employer who subsidizes a great deal of the cost (private group insurance). So many other fighters that I know do not have this luxury, for many reasons ranging from being students or small business owners to unemployed. These men and women benefit tremendously from the Affordable Care Act, or Obamacare. Yes, it has its issues, but for the most part, when dealing with a major illness like cancer, these folks have gotten the treatment they needed at prices they could handle. And access to care was never denied.
In the wake of the new, anti-ACA administration, I am in a panic thinking about what will happen to my friends who aren’t as lucky as I am. We all have ‘pre-existing conditions’ now that we have had cancer. If and when their insurance is cancelled, who is going to insure them at a rate they can afford? I’ll tell you who, no one. And if pre-existing conditions cause them to be permanently blacklisted, there will be no hope.
I don’t know a great deal about how insurance and the government work, but common sense tells me that if these people can’t get insured, yet still require medical treatment, one of two things will happen.
- They will have to use emergency care, exclusively or
- They will die
Neither of these are acceptable options. We cannot stand for this.
I can’t offer a solution, but I hope I can motivate you to think about this threat as an emergency. Change will happen when we can persuasively communicate the reality and stakes of chronic illness. Show politicians how the already-suffering risk suffering more, and in America, no less, if they repeal ACA. We can do this, can’t we?
By my crude calculations, in the 8 months of my active treatment, my insurance company paid out approximately $487,000. Half a million dollars.
What will happen to the thousands of men, women and children who don’t have private group insurance and don’t have an extra half a mil sitting around to pay for their treatment?
If you are privately insured within a group, I ask you to be grateful but not content. We’re all one layoff away from a gap in coverage. If you benefit from the Affordable Care Act, I ask you to pay close attention to what’s happening in government at the federal level. If you are uninsured, I ask you to do some investigating now before, perhaps, it’s too late.
And if you are a human being with a beating heart? I ask you to fight. We all deserve access to good health care. ALL OF US. It is a right, not a privilege.
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9 Comments Add yours
Once again you have captured and expressed how so many of usl post-cancer treatment people think and feel. It’s mind boggling how expensive the treatment for cancer is and a possibly enormous travesty if the Affordable Care Act is repealed. Now, as one of the people in the category of “having a pre-existing condition”, it is of a huge concern to me. Like you, I and my family are insured through my husband’s job and we always opted for the maximum coverage even though many, many years went by without ever any need for it. When I was diagnosed in September 2015, I was fortunate enough that almost all of what treatment was required was covered by our plan. I shudder to think what others less fortunate have to deal with and like you point out, we are all one lay-off away from having no insurance coverage AT ALL!
Keep preaching it, Sister!
Sending you lots of love and hugs – we still need them even though we’re on “the other side”!
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Thank you for continuing to read and for this kind and thoughtful comment. Grancer hugs!
Three cheers for all you do for the cause. You are an amazing spirit with a new and powerful voice for change and justice for all!
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And thank YOU for reading!
thank you for this! it sums it up so accurately. and the fact that you have great insurance but still want to fight for those who don’t is an excellent reflection of your character and strength. Just so as not to confuse people, when you have insurance through an employer, it is usually considered group insurance. insurance you have to buy on your own if your work doesn’t cover it or if you are self employed (as I am) is private insurance. people with private insurance are the ones hit the hardest. we have a daughter with many pre-existing conditions and before ACA went into effect, we were paying over $2200/month for it. just the premium and then we still had a crazy high deductible. we ended up losing our home because some months we couldn’t also afford our mortgage. that all changed in 2010 when we could get more affordable coverage for her. i am terrified of what will happen now but will also continue to fight for our cause and all those not as fortunate as us.
So many people are uneducated about what this ACA repeal will mean. Thank you for this post!
I can’t even imagine ability to pay being a factor in healthcare it is totally incomprehensible to me, growing up with the NHS in the UK and excellent state care where i now live in spain. It is insanity.
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We may see policies have lifetime limits imposed again. If that happens, even those with coverage would be kicked off if they have a long term illness. A friend’s child had stage 4 neuroblastoma,, diagnosed before his first birthday. He was in the hospital for treatment and had a stem cell transplant. Before ACA his treatments would have exhausted his lifetime limits. He is 4 and he is in remission but not NED so he has to have scans every few months. We need to keep fighting.
Thank you for passionately sharing your thoughts and encouragement to act. I am in treatment for recurrence and constantly worry about the ACA repeal. Even though I have employee group insurance, the repeal without an adequate replacement will allow even group insurers to re-instate lifetime coverage caps and to eliminate the cap on annual out-of-pocket costs as prescribed by the ACA. And that is just the beginning.
Already a more pressing concern is that insurance treats newer chemotherapies that are delivered in pill form as drugs rather than medical procedures – think chemotherapy via IV. The difference? IV chemotherapy is 100% covered as a medical procedure. Pill chemotherapy is treated as a prescription drug, for which they pay an annual maximum of $1500. The newest, non-IV PARP inhibitor drugs are $11,000 a month.
There are many of us that will get to decide sooner rather than later about whether we can afford to live.
Sending hope and choosing to act.
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