“[C]ancer patients could see premium surcharges as high as $142,650.”
That passage is from a Money magazine article analyzing the impact of the American Health Care Act (AHCA) that passed the Republican-controlled House this month — in particular, the huge increase in the cost of insurance for people with pre-existing conditions if the GOP succeeds in stripping out protections that are part of Barack Obama’s Affordable Care Act (ACA).
When I read it, I literally had to sit down and take several deep breaths. As a cancer patient, the idea that people like me would have to pay the better part of the cost of a house every year to be able to get treatments to keep us alive is utterly infuriating.
After several previous failures, enough House Republicans finally agreed on a version of the AHCA on May 3. If anything like the House version is passed by the Senate and signed into law, the legislation championed by Donald Trump and House Speaker Paul Ryan would gut significant parts of the Affordable Care Act (ACA), otherwise known as “Obamacare.”
While the ACA left millions of people at the mercy of private insurance companies and their high-cost, high-deductible policies, it did include important provisions that have had a positive impact on ordinary people’s lives.
The ACA requires insurers to accept all applicants, regardless of pre-existing conditions; cover an extensive list of conditions and treatments; and charge the same rates, regardless of pre-existing condition or gender. Another provision of the ACA mandates that insurers cover “additional preventive care and screenings” for women, which includes most contraceptives, sterilization procedures, and pregnancy and birth costs.
In the version passed by the House on May 3, the AHCA is an outright attack on these overwhelmingly popular protections.
The ban on not charging people with pre-existing conditions more would be lifted — if they don’t maintain continuous coverage, insurers could push them into a “high risk” pool that would raise rates through the roof.
How could supporters of the AHCA justify this potential gouging of those who need health care the most? By blaming the sick for needing more care.
The AHCA, according to Rep. Mo Brooks of Alaska, “will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool that helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy.”
***
It hardly needs saying that this kind of justification is profoundly ignorant of what causes such pre-existing conditions as cancer.
Statements like Brooks’ also ignore the fact simply being a woman means you are more likely to be charged extra for health insurance. When you consider that the list of pre-existing conditions includes pregnancy and eating disorders, it is clear that the ACHA is aimed at labeling women as more “high risk” patients, therefore justifying the idea that they should pay more.
Women have already been the disproportionately victimized by the health care system, and this law would only codify that discrimination further.
According to The New England Journal of Medicine, women are seven times more likely than men to be misdiagnosed and discharged when they present symptoms of a heart attack.
In 2014, a report from Brigham and Women’s Hospital in Boston called “Women’s Health Can’t Wait” documented the many diseases, for reasons yet unknown, that are more prominent among women. Women are four times more likely than men to have migraines and chronic fatigue, three times more likely to be diagnosed with auto-immune diseases, and twice as likely to have Alzheimer’s, depression and rheumatoid arthritis.
And the prospects for women’s health continue to get worse: the Cancer Research Center in the United Kingdom released a study in February 2017 predicting that in the next two decades, cancer rates for women will rise nearly six times faster than those for men.
Given that the deck is already stacked against women’s health, the fact that the AHCA goes even further in punishing us through policies that allow discrimination for pre-existing conditions is nothing short of criminal.
***
If you aren’t already convinced about how bad the ACHA is and what it will mean for people, especially women, with pre-existing conditions, let me tell you a few stories about my own medical journey — and you will hopefully be convinced why access to quality health care needs to be seen as a fundamental human right.
I have a rare type of non-Hodgkin’s lymphoma call angioimmunoblastic T-cell lymphoma. Basically, this means that in place of some of my white blood cells — specifically my T-cells, which fight infections — my body has produced malignant cells instead.
These cancer cells cause symptoms that can easily be confused for other diseases because they are so common. Some of the things I experienced early in the onset of my disease were things like anemia, fatigue, pain and swelling in my joints, and an inexplicable skin rash.
When I initially sought treatment for these symptoms, I was told to take iron pills and try to eat foods that were less irritating to my system to reduce my rash.
This experience is probably reminiscent of some of the interactions many people, especially women, have with doctors who are often overburdened with caseloads and unable to take time to get to know individual patients and their history. Anyone who knows me would know that I am the last person to complain about aches and pains — I often wait way too long, to my detriment, to seek treatment for things that ail me.
My doctor at the time simply looked up the symptoms, picked the most common cause from a well-researched list and sent me packing. My basic-level HMO health insurance coverage was adequate, but hardly comprehensive.
Looking back now, I’m glad that I had insurance at all since it allowed me to be able to pursue other diagnoses and treatment avenues at minimal cost. If I hadn’t had insurance, I most likely would have avoided further doctor’s visits and chalked up my symptoms to stress and lack of sleep — and not caught my cancer until it was way too late. Sadly, this is the fate of many working-class Americans with inadequate or no health insurance coverage.
After months with little success on the prescribed regimen of iron and health food, I was tentatively diagnosed with lupus and treated with steroids, which again did little to stem my issues, but generally made me feel terrible and further worn down.
Finally, after the cancer had developed enough to create a tumor in one of my lymph nodes, the tumor was biopsied, and I was given a correct diagnosis and underwent a round of chemotherapy.
My cancer was caught at Stage 2, which meant a very optimistic outlook. Treatment was hard, but my insurance covered it.
But when I saw one of the bills, I realized that just one of my chemo treatments ran close to $10,000. I can’t imagine what it would have meant for me to pay any part of that out of pocket. Even 5 percent of the cost of each treatment would have been $500 — completely prohibitive.
***
Currently nearly five years after my initial diagnosis, I am qualified for the newest experimental chemotherapy prescriptions on the market, in part because of the rareness of my particular kind of cancer and in part because my new health insurance coverage connects me with an amazing research hospital.
I feel very fortunate to be in this situation, but it is merely by chance of my work circumstances and those of my partner that I am.
Not to belabor my story — because I am sure that many of you out there have similar experiences or know of people who have gone through worse — but I am incredibly grateful that as a unionized teacher, I had access to health insurance that I could afford.
Even when my health insurance payments went from $30 to over $280 a month in the course of just a few years, I was still thankful to have most of the costs of my very expensive disease covered. I don’t know what I would have done without that.
Today, I’m afraid and deeply angry. Trump’s health care plan means that if for any reason I am unable to get guaranteed health insurance through my partner or my own job, I would be unable to afford to treat my cancer with insurance purchased on the open market.
I know that I am one of the lucky ones for now, but I also know people with conditions like mine aren’t lucky. People like my high school teammate, whose family just started a Go Fund Me page to raise money for treatment of her brain tumor because she doesn’t have health insurance.
For her and for everyone else out there dealing with serious health issues, there is only one set of demands that makes sense in any health care plan Congress wants to pass:
— Everyone should have the right to affordable, quality health care.
— No one should be denied health care because they can’t afford it or because they have a pre-existing condition.
— Health insurance companies should not be allowed to profit from denying health care services to people who need them.
Until these basic demands are met, we will continue to be at the mercy of a for-profit health care system and of politicians who don’t care about our suffering. We all need to build a movement now to demand much more than the AHCA — and even the ACA — can offer us.
We need to make sure everyone, regardless of gender or income, gets the health care they need and deserve.
Truthout Is Preparing to Meet Trump’s Agenda With Resistance at Every Turn
Dear Truthout Community,
If you feel rage, despondency, confusion and deep fear today, you are not alone. We’re feeling it too. We are heartsick. Facing down Trump’s fascist agenda, we are desperately worried about the most vulnerable people among us, including our loved ones and everyone in the Truthout community, and our minds are racing a million miles a minute to try to map out all that needs to be done.
We must give ourselves space to grieve and feel our fear, feel our rage, and keep in the forefront of our mind the stark truth that millions of real human lives are on the line. And simultaneously, we’ve got to get to work, take stock of our resources, and prepare to throw ourselves full force into the movement.
Journalism is a linchpin of that movement. Even as we are reeling, we’re summoning up all the energy we can to face down what’s coming, because we know that one of the sharpest weapons against fascism is publishing the truth.
There are many terrifying planks to the Trump agenda, and we plan to devote ourselves to reporting thoroughly on each one and, crucially, covering the movements resisting them. We also recognize that Trump is a dire threat to journalism itself, and that we must take this seriously from the outset.
After the election, the four of us sat down to have some hard but necessary conversations about Truthout under a Trump presidency. How would we defend our publication from an avalanche of far right lawsuits that seek to bankrupt us? How would we keep our reporters safe if they need to cover outbreaks of political violence, or if they are targeted by authorities? How will we urgently produce the practical analysis, tools and movement coverage that you need right now — breaking through our normal routines to meet a terrifying moment in ways that best serve you?
It will be a tough, scary four years to produce social justice-driven journalism. We need to deliver news, strategy, liberatory ideas, tools and movement-sparking solutions with a force that we never have had to before. And at the same time, we desperately need to protect our ability to do so.
We know this is such a painful moment and donations may understandably be the last thing on your mind. But we must ask for your support, which is needed in a new and urgent way.
We promise we will kick into an even higher gear to give you truthful news that cuts against the disinformation and vitriol and hate and violence. We promise to publish analyses that will serve the needs of the movements we all rely on to survive the next four years, and even build for the future. We promise to be responsive, to recognize you as members of our community with a vital stake and voice in this work.
Please dig deep if you can, but a donation of any amount will be a truly meaningful and tangible action in this cataclysmic historical moment.
We’re with you. Let’s do all we can to move forward together.
With love, rage, and solidarity,
Maya, Negin, Saima, and Ziggy