One of my most beloved patients, Ms. Chhem is passing away. I’ve come to say goodbye. It’s not a complete surprise as she’s had serious chronic medical issues for years, but after being part of her care team for a countless number of prior hospitalizations, it’s hard to believe that this will be her last.
When I first met her five years ago, I was shocked at the number of hospitalizations she had survived. Her chart identified her as a refugee from Cambodia with significant psychological trauma, two kinds of hepatitis from poor healthcare, and end-stage kidney disease requiring dialysis three times a week. She had low health literacy, few resources and didn’t speak English. I was terrified to be the young doctor in charge of coordinating her care and keeping track of all the pieces that inevitably get lost in our complex medical system.
Of course, in real life, she was nothing like the chronically ill patient her chart suggested. Despite the physical and emotional trauma her life had brought, she was always upbeat, laughing, and ready to experience life’s next moment. Or perhaps it was because of that trauma that she learned that this was the only way to cope.
During our visits her delightful pragmatism grounded me in what otherwise seemed like an impossibly chaotic healthcare plan. Our last visit had only been only 72 hours ago. As I walked into the exam room she had erupted into laughter, jumped up, and grabbed my hands with both of hers in greeting. It was a relaxed visit. Ironically, for once I was feeling good about her medical care. All of the loose ends I had been trying to resolve had recently been tied up.
So despite being familiar with intubated patients, it was jarring to see Ms. Chhem, the same woman who just a few days ago was relating to me the hilarity of coping with recently misplaced dentures, as a patient, intubated, sedated, and surrounded by machines and IV drips. Death doesn’t impact me the way it used to when I first became a doctor, but I still choked up as I held her hand and said goodbye.
And then my thoughts darkened. What would happen to my patients if the Affordable Care Act is repealed?
I fear its repeal. As a queer person, I fear its repeal even more than a repeal of same-sex marriage.
To many of the detractors of the Affordable Care Act (ACA), Ms. Chhem represents exactly what is wrong with this country. They resent refugees, people they see has eternally foreign and inherently un-American, getting health care insurance and other benefits that the rest of us would consider basic human rights. The repeated sentiment is that refugees should not be getting benefits while other Americans (ie white people) suffer.
Even beyond the base fact that all humans are entitled to basic healthcare, the flaws in this thought process are too numerous to address here but a quick run-down would include: assuming that there is a clear zero-sum equation somewhere that is literally taking money and resources away from white people when in reality our government ceaselessly wastes money on armed conflict in foreign countries and an over-militarized police force; a self-centered view of what one inherently deserves as an “American;” an offensively restricted definition of what it means to be “American;” and in the case of most Southeast Asian immigrants, the fact that they are fleeing political and armed conflicts that the US had a large hand in creating. In fact in Laos and Cambodia, many refugees were specifically recruited by the US Armed Forces to fight on our side and then when we lost and withdrew our troops, they were abandoned to persecution, torture, and death. The same thing is happening now to those recruited to help the US invasions and occupations of Iraq and Afghanistan, as the US has pulled out of those countries it first destroyed.
The ACA is such a large and multiplex piece of legislation that binary “us versus them” statements are gross oversimplifications. It’s so complicated that people can’t even agree on how many pages it was. This makes discussions about the ACA difficult in the public sphere. The debate is either so cerebral that it’s impossible to understand or it’s so simplified that it’s not actually not a comment on the ACA at all, but a projection of an individual’s already existing political beliefs.
I’m a primary care physician whose main task is to care for patients. I see patients in an outpatient setting, an inpatient setting, and in long-term care facilities. I deliver babies and help patients transition to hospice. I have witnessed on a day-to-day basis, person-to-person level, the impact of the ACA on patients, doctors, and administrators.
When I say that I fear the repeal of the ACA, I’m not thinking about philosophical political concerns. Here are the three largest changes that I have seen that would be devastating to lose:
1) Transparent Monitoring of Quality Metrics that Impact Reimbursement
For all the divisiveness between classes about the ACA, the ACA’s implementation of “pay-for-performance” or quality-based reimbursement benefits the poor and rich alike. Historically all healthcare providers and systems have been based on a “fee-for-service” model. What that means that is that folks are paid based on each episode of care. While this makes sense at first glace, it actually incentives poor medicine.
For example, if you came to see me because you had hand pain after falling I get paid for that visit. However, if I miss a diagnosis of a bone fracture and instead treat you for a sprained wrist so you have to come back again a month later for a second visit because things have gotten worse, not better, I get paid again – something that probably would not have happened if I had made the right diagnosis to begin with. I get paid more for poor doctoring than good doctoring.
There are no service industries that behave this way. Everywhere else all the services that are required to make up for the mistake are free. Recently the manufacturer of my car put out a recall on dashboards. They paid for the labor and parts to replace it because they were the ones who messed up in the first place. In healthcare, that’s not the way it’s worked. The most egregious example I can think of? If your surgeon amputates the wrong leg (an unfortunate mistake that actually has happened), they get paid for the surgery that cut off the wrong leg and the surgery that they do next to cut off the correct one.
Three of the best programs that the ACA established are Medicare’s Hospital Value-Based Purchasing (VBP) Program, Hospital Readmissions Reduction Program, and the Hospital-Acquired Condition (HAC) Reduction Program. Medicare, the largest insurer in the country heavily influences the practices of all other insurance companies.
In a nutshell the VBP rewards entities that score well on certain metrics that range from clinical (e.g. speed of treating of heart attack) to patient experience to efficiency. Those that score poorly get reduced payment with the fee reduction invested into programs to improve their quality outcomes.
The Readmissions Reduction Program and the HAC target common complications that are preventable. For example, if you are discharged from the hospital after having a heart attack too soon and have to be readmitted a few days later for complications, the second admission was preventable. Medicare can now track readmission averages based on risk and reward hospital systems with low readmission rates.
The HAC looks at common complications, for example surgical site infection and catheter-associated infections, and rewards hospitals with lower rates of preventable complications.
While we don’t like to admit it, reimbursement really drives care. I started my medical training before the implementation of this and the change has been remarkable.
Catheter-associated infections happen when tubes that drain urine are left in the bladder for long enough that they cause infection. The key is to remove them as soon as possible. I remember being told when I was a medical student about a study that showed most physicians could not accurately identify which of their patients had catheters in place. By the time I was graduating from medical school, you couldn’t present a patient without being drilled about the status of a patient’s catheter and plans for the soonest removal possible.
While a bladder infection doesn’t sound all that serious to many of us, it can be life threatening in a person who is already sick. Now, because it’s tied to money, it’s a detail that we rarely forget about.
My favorite part of all this focus on quality? Every hospital’s quality ratings are posted publically. Not only is public shaming an amazing incentive for improvement, but it also means that hospitals are tracking this information and comparing it a public standard – something that didn’t exist before. Hospital A might have a huge rate of surgical infection and not even realize it because they didn’t know that other hospitals had lower rates. And now patients can look it up as well. If you’re about to get a knee replacement, you can look at the readmission rates of all your local hospitals and make an informed decision.
2) Birth Control Coverage
The ACA attempted to not only regulate the insurance market and improve access to healthcare insurance, but it also looked at the quality of healthcare insurance that folks were given. As part of ensuring that all insurance coverage provided basic preventative healthcare, the ACA listed discrete items that insurance companies were required to pay for.
The boon was inclusion of contraception coverage.
Women have long known that control over their reproduction (or lack thereof) is one of the greatest dictating factors in their lives. More recent analysis has shown that one of the largest single driving factors of the rapid gains that women made in workplace equity after the 1960s was the advent of the birth control pill.
The key phrase in contraception these days is LARC, or Long-Acting Reversible Contraception. LARCs are the most effective forms of birth control. Once inserted, they don’t require any further thought and efficacy is over 99%. Further, fertility returns to normal almost immediately after removal (which, by the way, is a simple office procedure). The problem is that though they are cost-effective in the long run, without insurance, the upfront cost is frequently prohibitive.
For example, the Mirena IUD is one of the LARCs that is currently available. It is effective for 7 years. Anecdotally, it’s also the most popular form of birth control amongst doctors, which I think says something. Without insurance coverage a Mirena IUD typically costs $500-800 for the device, plus an insertion fee that typically runs around $300.
Before the ACA, most of my patients could not afford that. Now not only are IUDs an option, but so are 3-year long implants, the patch, the shot, and the ring. Every person’s body is different and the best form of birth control for one patient is not necessarily the best for another. It’s critical to have options.
The loss of birth control coverage is one of my biggest fears for my patients. I say patients, not female patients. It’s true that in our patriarchal society women are frequently left to be in charge of birth control but let’s not forget that unplanned parenthood impacts men as well. I once took care of a man going through some occupational health testing. He confided that when he was in college he had once planned on going to medical school. When I asked him what changed, his answer was simple, “Procreated too early.”
And unplanned parenthood impacts children.
Why anti-choice activists seem to care so much about the well being of theoretical children in the form of embryos and fetuses, but don’t acknowledge the well being of all the children subject to abuse and neglect in this world continues to baffle me.
3) Increased Access to Health Insurance
This largely took the form of the optional Medicaid Expansion and anytime Medicaid is expanded, rich people get concerned about giving poor people free handouts. Enter: the perennial (and boring) debate about the appropriate size of government.
We forget about the people that these policies impact. We don’t hear the story of the 42-year-old patient that I met who works two jobs to contribute to the family (his wife works as well) and is having the first doctor’s visit of his adult life thanks to the ACA. And they’ve come in droves.
What’s forgotten is that health insurance was actually invented to help maintain labor production. The UK’s National Insurance Act of 1911 recognized that illness was often unpredictable and so if every member contributed to a healthcare system it could provide aid to injured workers with the idea that they would then be able to return to the labor force faster.
One of the most incredible impacts of the ACA in my practice has been access to addiction treatment. Addiction to prescription opiates and heroin is at epidemic levels in this country. Interestingly, the most recent surge is attributed to heavy prescribing by doctors in previous years causing addiction in patients. We’re not talking about whatever stereotype people have in their head about “addicts.” One of my patients got addicted after she was given opiate pain medication after having her first child.
The most effective treatment is opiate replacement therapy. Most people know these as Methadone clinics and Suboxone prescriptions. Without them, some experts estimate the lifetime relapse rate as 95%. With them relapse is reduced by 34%. Few modern medications have such a large individual impact.
The problem is that before the ACA the wait lists to get into a methadone clinic were really long. Many of the patients that are admitted to the hospital for opiate dependence related complications are interested in recovery. We would treat them, get them engaged in treatment, and even get them stabilized on methadone but upon discharge, there was no way for them to continue the treatment. No one was surprised when they relapsed shortly after discharge.
If you discharged a patient with asthma and told them to get on a waitlist for their daily preventative asthma medications, of course they would end up getting worse again.
With the ACA, wait lists dropped dramatically as virtually all patients with substance dependence now qualified for Medicaid. In fact, our hospital setup a system with the local methadone clinic where upon discharge, the patient would have an appointment with them the next day.
Treating patients with opiate substance dependence is one of the most rewarding things that I do as a physician. You watch people transform from homelessness, estranged from friends and family, to steady employment and stabilized relationships.
Doing the humane thing and expanding healthcare insurance access also improves economic productivity.
Ultimately, the ACA is just like every piece of large legislation. It’s flawed and hugely disappointing for liberals and conservatives alike. However, it’s implemented discrete improvements. Repealing the entire ACA would be imbecilic.
Even Trump has acknowledged that there are some parts of the ACA that he likes. I just hope that small moment of maturity lasts long enough to allow my patients to get the care they deserve.