“I probably take about 30 pills a day,” Jon tells me after I ask him to describe his daily course of treatment. And that doesn’t include shots, nebulizer treatments, physical therapy, and other steps he must take to manage his cystic fibrosis.
Altogether, Jon estimates that his prescriptions would cost him over $10,000 a month if he lacked insurance — a figure that Jon, who is unable to work due to his illness, could not reasonably expect to raise.
Jon says that Obamacare, which enabled him to remain insured after he lost his employer-provided plan, “definitely saved me from bankruptcy, and quite possibly saved my life.”
Now, however, Senate Republicans are pushing a bill that would deny millions of Americans of the security that Jon enjoyed when his illness left him unable to obtain insurance through an employer. Twenty-two million people will be stripped of health insurance over the next decade if the Senate version of Trumpcare eventually becomes law. Though GOP senators have delayed a vote on the bill until after the July 4th recess, Majority Leader Mitch McConnell pledges to come up with the votes to pass it later this summer.
Had this legislation been in effect when Jon became too sick to work, he very well may be dead.
“Managing your care literally becomes a full time job.”
Pictured above are just some of the medications and treatments Jon must take every day. “Everything pictured here is taken at least once daily,” Jon tells me in an email, “most at least twice.” And the picture does not include “all the medical equipment I use.”
Cystic fibrosis is a terrible disease that causes Jon’s lungs to fill with choking fluid. It also gets worse as a patient ages, gradually making it impossible for them to breath. Eventually, many patients require a lung transplant.
For now, Jon can get by with his $10,000 worth of medication every month, but it is not easy. “Managing your care literally becomes a full time job,” Jon warns, adding that “every decision I make is based off what is best for my health.”
Basic choices like where to eat, when to wake up, whether to interact with other people, and whether to exercise or rest are all shaped by Jon’s constant need to manage his condition. Jon even has to wear a monitor that constantly tracks his oxygen levels. If they drop too low, he has to slow down or even stop what he’s doing to rest.
Two years ago, Jon tells me, “it was looking like it was going to be time” for a lung transplant. But he was able to ward one off after he “learned about the science of air quality” and was able to make changes to his living environment that made it easier for him to breathe.
Staying alive is hard work, and it requires Jon to constantly be aware of his health, what he should be doing to improve it, and what he needs to learn to get through the next month.
Yet, despite this constant struggle, Jon spent much of his life in the work force. Back in high school, he got jobs as a grocery store cashier and at the YMCA. He eventually moved to the accounting room at the store, then briefly to a banking job, and then to a data processing job at the University of Hartford. At the peak of his career, he managed fundraising projects for the university.
Eventually, however, Jon’s health deteriorated to the point that he could no longer work. And that’s when Obamacare may have saved his life.
“Having health insurance is the only thing that gives you any freedom whatsoever.”
Before Obamacare, many people who became disabled due to a life-threatening illness began a race against time.
In Jon’s case, he became eligible for Social Security disability benefits around the time he stopped working, but even after he qualified for these benefits, he faced a five-month waiting period before they kicked in. Then, he had to receive these benefits for another two years before he qualified for Medicare. That means there were 29 months between the point when Jon lost his job — and, with it, his employer-provided health insurance — and the point when Medicare would provide him the treatments he needs to survive.
One option was COBRA, a federal law that allows people who lose their job to temporarily remain on their former employer’s plan. But COBRA often requires former employees to pay exorbitant premiums. And even if Jon could afford these premiums, COBRA typically only allows a former employee to remain insured for up to 18 months — still leaving a gap of nearly a year.
At that point, Jon could have potentially sought an 11-month disability extension, but COBRA premiums can rise even higher during this 11-month period. Failure to make even a single premium payment on time “may result in loss of coverage,” according to the U.S. Department of Labor.
And, of course, Jon would need to meet all of these financial obligations while he is unable to work.
Another possibility is Medicaid. But without Obamacare, which expanded the program’s eligibility, Jon would have needed to live a life of abject poverty in order to qualify for Medicaid in his home state of Connecticut.
Before Obamacare, Connecticut imposed an asset limit of just $1,600 on people with disabilities, although this doesn’t include a home or a car. So Jon would have needed to spend down nearly everything he owns in order to qualify for Medicaid.
Obamacare saved people like Jon from a choice between utter destitution and death. Thanks to the Affordable Care Act’s exchanges, Jon was able to buy a subsidized health plan that enabled him to pay his medical bills until he qualified for Medicare. Meanwhile, the law allowed Connecticut to expand Medicaid to cover anyone who earns less than 133 percent of the poverty rate — without requiring them to sell off their assets.
And now the Senate could return people like Jon to the way things were.
“People start shrinking their lives.”
Trumpcare is a direct assault on poor people and their ability to get health care. By 2026, the Senate bill would cut Medicaid funding by 26 percent — which equates to $772 billion— and then it would cut the program even deeper, eventually phasing out Medicaid in its entirety.
Trumpcare imposes caps on Medicaid spending, then reduces the real value of those caps each year. Under the Senate bill, the cap will only grow at the rate of general inflation, about 2.4 percent per year. But the cost of caring for a Medicaid beneficiary is expected to grow by 4.4 percent per year.
That means a stingier cap each year, until eventually the entire program becomes virtually worthless.
Meanwhile, the Senate bill slashes subsidies on the Obamacare exchanges, forcing many individuals into cheaper, bare-bones health plans. Indeed, according to an estimation from the Congressional Budget Office (CBO), the newer, more miserly subsidies will only allow someone to purchase a plan with a $6,000 deductible, on average.
Given such high out-of-pocket costs, CBO expects that “few low-income people would purchase any plan” at all.
Meanwhile, most exchange customers who want more than a bare-bones plan will see massive premium spikes. The Kaiser Family Foundation estimates that the average cost of a mid-range silver plan will spike by 74 percent.
The result will be more deaths, more medical bankruptcies, and less freedom for people with expensive health conditions.
Without health coverage, Jon warns, “people start shrinking their lives.” They “stay in that job much longer than they should” because they are terrified of losing coverage if they take a less secure position or start a new business. They stop taking risks.
“I have friends who are on Medicaid who are petrified that, if they lose their ability to get it, that’s all that’s available to them,” Jon tells me. If Trumpcare passes, they could eventually lose any meaningful access to health coverage.
It will bring back a world, Jon fears, where we are all just “one bad diagnosis away from being ruined.”