I moved to Bordeaux with a suitcase full of clothes and a backpack full of pills. I was permitted by my parents’ insurance to take only a 3-month supply of medication. The plan was simply for me to get on that plane and figure it all out as I went along.
The first months in Bordeaux came and went, and then it was time to refill my prescriptions. I finally worked up the courage to make a phone call in French for the first time. I dialed the office from a list of English-speaking practitioners in Bordeaux and made an appointment for that afternoon. I spent the entire day trying to anticipate the issues of finding and meeting a new practitioner. I counted my euros, rehearsed my health-history speech, and practiced my French to prepare for what I know has always been a challenging, and at times traumatic, experience: navigating health care while living with a chronic illness.
I saw and talked with only the doctor. No nurses, no aides, and no computer sat between us while we discussed my situation. He read over my translated documents from my GP back home, asked a few clarifying questions about language and my condition, and then asked me what I needed from him.
For those of you who are also accustomed to regular doctor and hospital visits in the US, you can appreciate my complete surprise and awe at this unusually affirming, simple interaction. On average, doctors in the US only spend about 15 minutes with their patients. This doctor took the full hour to make sure he fully understood my needs before he recommended a pharmacy down the street. He called ahead to let them know I was coming, and that I would need some extra assistance with the language.
After I left my appointment, I went directly to that pharmacy down the street. Several of the people working patiently helped me over Google translate to answer all my questions as they found the French equivalent of each one of my prescriptions. They gave me the month's supply and then asked for my health insurance. I handed them my paperwork and braced myself to hear the final cost.
The total was €0.
When I paid my tuition to attend the University of Bordeaux for the year, I also bought into France's Social Security. The total cost for both was €494.10.
€494.10 for an entire year of education AND healthcare.
My parents and family have sacrificed so much to afford the surgeries, medications, and care while I was an undergraduate student. The Sara Spins Foundation was started because of the impossible combined costs of education and disability. Many friends and strangers contributed time and donated generously over the years to help ease this financial stress for myself and others, even while carrying the burden themselves. I know I am only one of so many people forced to turn to fundraising online to be able to afford life-saving healthcare.
French education is structured slightly differently than how it is organized in the US. I’ll break down these differences and costs in a future blog post. When I moved to France, I knew the cost of my program would ultimately be covered by the modest stipend. I didn’t really know what the health care would be like at all.
I cannot solve, or perhaps even identify, all the issues involved with the outrageous costs of both education and healthcare in the US. I can, however, continue to share my experiences and ask questions.
Right now, I’m in the middle of a flare. I was hospitalized about a month ago due to some complications with my kidney. Over the last several weeks, specialists have continued to follow my progress with continuous blood work tests and medical scans. Although none of this is necessarily new to me, navigating the French Healthcare with a medical emergency is. This experience has only reaffirmed the substantial difference between the US and France health care costs.
Even though I’ve lived in France for over a year now, the culture shock continues.
If America is supposed to be so great, why do I feel more cared for in a foreign country?
Why is healthcare not considered a basic human right in my home country? Why are people dying from things they could be treated for? Why do I have so much internalized shame and guilt for being sick?
Why is the cost of healthcare for people so drastically different between the US and France?
There is not one simple answer or solution to fix these many injustices. But there are many things we need to do, as informed citizens and voters, to be aware of the major differences of the US healthcare compared to, well, the rest of the world.
According to the World Health Organization (WHO), France has the best healthcare in the world. This ranking was based on several indicators including the level of health of the population overall, health inequalities/disparities, how people from different economic statuses are served by the health system, how satisfied patients are to the responsiveness within the system, and who carries the financial burden.
Based on this WHO criteria, the US is ranked much further down the list at 37 out of 191 countries surveyed. Most European countries surpass the US in this regard, although the US spends the most GDP (gross domestic product) on healthcare by far. Most reports agree that the current direction US healthcare is headed is disastrous for not only the economy, but for and patients and care-providers involved. In the US, Health is a trillion dollar industry. But who can afford to buy it?
We must ask ourselves, and our politicians, why is one system better than the other? There are many cultural, institutional, and governmental differences between the two countries. But from a personal perspective, there is one obvious significant difference between France and the US: the cost of healthcare as a patient.
I’m privileged to be dependent on my parents’ insurance while in the US. They both work extremely hard - often at the sacrifice of their own health - and receive insurance through their full-time employment. They have sacrificed and fought endlessly to be my advocate and caregiver and to make sure I received the care I needed at whatever means necessary.
Part of their salary is taken each month for health insurance. Then, they choose to pay extra for specific coverage. However, most plans, including my parents’, involve a deductible. That means that before insurance coverage will kick in, there is a minimum amount that needs to be payed out of pocket – up to several thousands of dollars. This will reset itself every year. Once the deductible is met, then the insurance will cover the costs at only a certain percentage.
Before the protections of the Affordable Care Act (ACA), insurance companies could place a limit on how much they would spend over a year or even in a life-time. The insurance companies also have the liberty to dispute and deny claims, even if a medical doctor deems the procedure or test necessary. Indeed, insurance did not agree that a powered-wheelchair was “medically necessary” to navigate my hilly campus when I could only walk a few meters at a time. Insurance companies’ employees have even received bonuses for having the most number of claims denied.
Additionally, even doctor and hospital visits that are “in-network” come with a co-pay. Every time I passed out from my dysautonomia and smacked my head against something, my parents paid $100 just to see an emergency room doctor. The cost of the scan was never included, of course, but it was a necessity.
The specialists that have helped me the most have been “out-of-network” and therefore not covered or reimbursed by insurance. The life-changing biofeedback treatment my sister and I have received was only possible because of crowd-sourced fundraising.
Any prescriptions also require a co-pay. Depending on the medication, these can reach outrageous costs from several hundred to thousands of dollars a month.
My family manages. The stress and the burden is there every month, but we get by. Many others are not as privileged.
According to the United States Census Bureau, there is a significant wealth gap between race. The median value of assets was determined to be a little over $100,000 for white families. For people of color, including Black and Latino households, the amount of wealth falls at only 7 - 8,000 dollars. There are many reasons why there is such a large gap in wealth distribution in the States. But how many families are just one medical emergency away from bankruptcy?
People are having to choose between their prescription and whether they can put food in their fridge or turn on the heat. People are dying because they don’t have that choice. People are dying because they can’t get coverage in the first place.
2/3 of people without health insurance coverage are working full or part-time, and are still unable to get coverage because of the high costs. Many are dependent on Medicare and Medicaid. They often avoid cheaper preventative medical care until they are forced to go to a public hospital, where tax-payers must make up the difference.
This is where many people are confused and upset about what they understand “Obamacare” - the ACA - to be. The ACA is not socialized medicine.
It is a law in two parts: The Patient Protection and Affordable Care Act and the Health Care and Education Reconciliation Act. It was proposed to be a multi-tiered approach to expand coverage and lower costs for the poor, but still allowed for a free-market of health insurance companies. Many new protections were put in place for patients and persons with chronic conditions. But overall, the quality and amount of care would still be dependent on the cost.
Fortunately, recent efforts to rollback some of the ACA’s protections, including denial of insurance for pre-existing conditions, have been stopped. Nonetheless, the US Government continues to try to make changes. Trump has repeatedly blamed President Obama for the current mess of US healthcare, and promised his voters he would “repeal and replace Obamacare”. However, the ACA is still in effect. He proposed the American Health Care Act (AHCA) in opposition, and has issued a recent executive order to try to promote healthcare choice and competition. With the new tax bill, medical expenses will no longer be tax deductible starting next year. There continues to be controversy over what the new AHCA means, who really benefits from these law changes and tax exemptions, and whether or not healthy vs sick people will ever buy into health care.
Health is never a guarantee. Everyone will experience a “disability” in their life - as an infant, in their old age, a sports injury, developing a chronic illness like me, whatever. Health is a social construct that forces us to believe in a binary of sick vs not sick. And the truth is, “health” looks and feels different for every single person. I believe every person should have autonomy and access to care for themselves.
Contrary to the US, France is a universal healthcare system funded by National Health Insurance. Everyone must pay into the Sécurité Sociale, which covers retirement, unemployment, and other benefits including healthcare.
This cost was included in my tuition at the beginning of the year. Although, I’ll be one of the last students to pay into it, as President Macron has recently changed the law to relieve students of the additional financial burden. Next year, the cost of education will be even lower in France. On the other hand, our government continues to increase the financial burden of earning an education and living with illness.
The Sécurité Sociale only has certain limited coverage, so I chose to buy a complémentaire santé. I opted for the most comprehensive and most expensive additional healthcare plan possible - a mutuelle. My mutuelle covers 100% of my monthly medications, doctor visits, hospital stays, scans, lab-work, and even dental and eye-care. It also covers me if something happens while I’m traveling within the EU. The cost of this student mutuelle is only €40, about $50, a month.
Right now, my recovery is rough. I’m exhausted physically and emotionally. It’s stressful to manage new health complications in French, away from my family, my familiar doctors, during a school semester. But, for the first time, I feel like I'm living in a country that doesn't penalize me for being sick.
Everyday, I am working to unlearn the harmful ableist beliefs I have internalized for years of living with a chronic illness. I have to remind myself constantly that my worth is not based on my ability to work. That it’s okay ask for and seek help when I need it. That healing isn’t linear, and that it takes trust in Divine timing.
After that first day at the doctor’s office in France, I broke down on the street and cried. I wept with relief - realizing that the resistance and the normalized trauma I was prepared for never came. I cried for hours in sheer disbelief that it could be so easy. I will always remember the efforts of all those strangers who bridged the gap in language and understanding to fill the prescriptions I needed. I am grateful for the folks who continue to do so to get me back to health.
Like many others, my family and I will spend the rest of our lives paying off my medical and student-loan debts. I will spend the rest of my life living with a chronic illness. When I think about my future, I think about where I can afford to stay alive. I can only stay dependent on my parents' insurance for another few years. And in the future, assuming I have a well-paying job, would I still be denied for coverage or forced to pay significantly more due to my pre-existing conditions? I’m an American citizen, and I'm afraid moving back home could be detrimental to my health and finances.
If we live in a our society that values the dollar above all, we have to make daily efforts to get us back to our humanity. While we disrupt and dismantle oppressive systems, we must also uplift and support our community as we work towards creating a better world. Complacency only contributes to the problem.
The personal is absolutely political. There is nothing great about a country that can't support the education and health of its citizens.
So indeed, I will continue to fight for justice and access to healthcare for myself and others. To resist. To do my research. To ask questions. And call my representatives back home.
I miss home. I miss my family and friends every minute of every day. But living abroad has truly opened my eyes to the rest of the world and to the possibility that we can do better. Living in a country with great healthcare is changing my life. France makes it easier for me to heal.
Sharing personal thoughts about neuroscience, travel, and health.