Some of you who have followed my posts over the past few years know that I am a cancer survivor. It’s been almost two years since I was very unexpectedly diagnosed with ovarian cancer. I have shared some of what it’s been like to suddenly find myself in the position of being a patient after spending a career caring for people who are sick, believing I wouldn’t find myself on the other side of this equation. I still struggle with the reality that I have had cancer and that I will have to monitor for it rearing it’s ugly head, for the rest of my life. What I haven’t shared is how the costs of healthcare contributed to my situation, delayed diagnosis and increased my chance for a recurrence. I am sharing it now because as I continue on this journey, I am starting to think the current system is discriminatory and I know it needs to change.
When I was diagnosed with ovarian cancer, I hadn’t been to my doctor for my yearly recommended examination for about 20 months. When I called to make my yearly appointment, I was told I had an outstanding bill I had been unaware of because I had moved and they didn’t have my new address. The bill was a result of “coinsurance” that was from a necessary and fairly routine procedure, still it was substantial enough that I had to set up payments over time because I couldn’t afford to pay it in full. I was told I could not see my doctor until there was a zero balance. I felt fine and had no concerns of any illness so I skipped my routine exam that year. Fast forward almost 2 years later when an unusually potent migraine resulted in a suggestion by my neurologist that I get my hormone levels checked. I contacted a new gynecology group because I couldn’t be seen by my regular ob/gyn because of the balance that still remained. On this routine exam, a very large mass was found on my ovary. So large that even though I was assured it was benign, it needed to be removed. During the surgery, the mass ruptured but the doctor told me not to worry because “It’s not cancer.” She told me the rupture was because it was so large that it made it difficult to remove. She called me about a week later to tell me it was in fact, cancer and the rupture, unfortunately complicated the staging and made recurrence more likely. The fact is, if I had gone to my regular appointment, it would have been discovered when it was much smaller and may not have ruptured. I am not blaming the doctor or the organization where I received care but, it wasn’t discovered because I owed the clinic money and they wouldn’t see me until the bill was paid. I don’t let myself think about that too much, but it’s the truth and it’s the way healthcare works in our current system.
The cost of just the surgery to remove the cancer was over $250,000. This included just one night in the hospital and no chemotherapy or radiation treatment. I had a good insurance plan but even with that, my responsibility was over $30,000. I can safely say most Americans would find it a challenge to add that expense to their yearly budget. The ongoing costs of testing for a possible recurrence are approximately $20,000 every year. That is on top of the nearly $10,000 I pay in premiums each year because I am self employed. I can’t afford this so I stretch out the time between scans and labs further than my doctor recommends.
In the back of my mind I know this could mean I don’t detect something as soon as I should again and that it can literally mean the difference between life or death.
I also know that if I owe a balance again at the hospital where I get my testing, they can refuse to treat me and I have been down that road before.
So as I write this, I find myself waiting again to find out if something discovered on a diagnostic test done almost 9 months after the doctor ordered it, is something that could take my life. Not only that, I brace myself for the cost of repeated imaging, biopsies and what may follow and I am angry, frustrated and of course, afraid. I know I am not alone and for many, it has been worse. I have worked in healthcare long enough to remember when people were denied insurance coverage because they had an illness like cancer or diabetes or a heart defect. I heard the desperation of new mothers who were grateful their precious newborn had received life saving heart surgery but had already reached their life time insurance maximum and had no idea how they would pay for the ongoing care their child needed to stay alive. The Affordable Care Act changed some of that, at least we aren’t denied coverage but it costs too much and patients can still be denied care if they owe a system money. So we constantly pray we don’t get sick again and try to find the right balance between what we can afford and what will keep us alive.
For those of you out there who say “Healthcare isn’t a right,” I tell you to save your breath unless you have faced a condition that could take your life or the life of someone you love.
To those of you who say patients should forego a smartphone or daily “fancy” coffee drink in order to pay for healthcare I say, what fantasy world do you live in where eliminating those things would make even a miniscule dent in the healthcare costs millions face?
You can also put aside the delusion that someone is sick because they did something wrong. I hate to break it to you but just because you exercise, eat healthy or have no family history of disease doesn’t mean you are magically immune to a life changing diagnosis. It can happen to anyone and I am walking proof of that reality. I ate right, exercised, never smoked, have no family history of cancer and like millions of others in this country I got sick anyway.
I find it especially ironic as I travel to other nations and collaborate with healthcare leaders to improve delivery of care to their citizens that I, a struggle to access the care I need in the United States of America. So I pose the following to ponder:
Should we get the same rights as prisoners?
Shouldn’t we at least get the same rights that criminals in this country get? The supreme court has held that those under government control must have “ Adequate food, clothing, shelter, and medical care as a component of the protections accorded by the Eighth Amendment and that “Deliberate indifference to serious medical needs of prisoners constitutes the ‘unnecessary and wanton infliction of pain,’… proscribed by the Eighth amendment,” equating this pain with cruel and unusual punishment. Does “Cruel and unusual punishment” only apply to prisoners? It seems pretty cruel to make law abiding citizens suffer because they can’t afford medicine or treatment or to force them to choose between food or medical care.
Are we discriminated against if we are sick?
It used to be that healthcare provided through programs like Medicare, Medicaid and CHIP seemed sufficient to mitigate an accusation that there was discrimination based on a citizen’s ability to pay for adequate healthcare. Unfortunately, over time there has been an increasing group of Americans that don’t meet the criteria to receive these supplementary services but also can’t afford the cost of the healthcare available to them. I don’t consider myself poor but I can’t afford $30,000 a year or more for basic healthcare. Do I have the same rights to life and general welfare as anyone else? If treatment to save my life is available, should I be denied it because I don’t have the ability to pay? Did the founders of our country mean to make good health only available to the wealthy? It isn’t just what used to be considered the poor or elderly who can’t afford basic healthcare or medication anymore. Hard working people who have made contributions to their communities and are necessary to our countries security and growth can’t afford necessary care. This is a problem for all of us.
Where do we draw the line?
For those of you who continually argue that the government doesn’t pay for our car insurance or life insurance I will explain the difference. Driving a car isn’t necessary for survival, neither is providing an inheritance for your heirs. These things aren’t the same as access to professional healthcare services that prevent you from dying. Suggesting these things as examples of why healthcare isn’t a right, is a faulty argument and insulting to anyone who is sick. Our founding fathers and leaders were concerned for the health and welfare of our citizens. Franklin D. Roosevelt even tried to enact a “Second bill of rights” that included access to adequate medical care and the opportunity to enjoy good health. They couldn’t have imagined how costly healthcare would become as the model ushered in with the advent of health insurance, has progressed and costs have skyrocketed. I am not even insisting the government cover the cost. Even making it affordable, meaning something I can pay for that doesn’t consume my entire grocery budget for a year is a good place to start. At the very least, insuring people with truly life threatening disease have an opportunity to take advantage of the treatment we can provide seems reasonable to me and maybe it’s time to make it an undeniable right of every American.
Michelle Chaffee is the Founder and Chief Executive Officer at Älska, a technology solution created to empower patients and their caregivers through improved communication with care teams, secure, mobile storage of personal health records and tools to better manage chronic disease. She is based in Minneapolis, MN. Follow her on Twitter.