In writing this blog lately, I can't help but think of The Real World slogan that was so iconic back in the 1990s. We were all enticed to:
...find out what happens when people stop being polite and start getting real...
When you're doing something big—like moving to Italy—it's natural to worry that at some point "reality" will hit. In our last post about moving to Sicily, I shared all the logistics, paperwork, repairs, and tax planning we're doing.
Since then, we hit another "reality" moment. This time about medical care.
As I've shared before, medical care is a major issue for me. I've lived with chronic migraines for nearly 20 years. Migraines affect every aspect of my life: what I eat, when and how I am able to work, what medical care I need, whether and how I travel and make other plans...and that's only touching the surface.
In fact, one of the reasons we originally thought about buying a house in Sicily was so that I could actually travel abroad. Air travel, altitude changes, time changes, sleep changes, weather changes—they all trigger migraines for me. So traveling abroad for a one-week vacation isn't a dream, it's a nightmare. But with a house, we'd be able to come to Sicily, spend a week in a comfortable place recovering, and then enjoy a few weeks or months here.
Of course, the wrinkle was we fell in love with Sicily and decided a few weeks or months weren't enough. Thus, moving and logistics. One big element of those logistics has been coordinating my healthcare. Complicated enough for migraines. More complicated when you throw in yet another neurological issue!
But let's start at the beginning...
Navigating US Healthcare with a Chronic Illness
To set the stage for this tale, let's paint a picture of healthcare in the United States. In the US, you're dealing with:
Insurance premiums: This is the monthly fee you pay to a health insurance company to secure your coverage. For two people in NYC, you can expect to pay at least $1,000 per month and up to $2,500 depending on your plan deductible and the insurance company (which affects which medications you can get and which doctors you can see).
Plan deductibles: This is the amount of healthcare costs you must pay out of your pocket before your insurance coverage actually kicks in. Every plan is different, but it can range from $0 to $12,000 for a family of two.
Copays: This is the amount you pay for each prescription you fill and each doctor visit you need. Sometimes, your copay is higher than the cost of the visit or the medication, so you end up paying the full amount yourself.
Insurance networks and in-network doctors: Doctors, hospitals, and other healthcare facilities sign up to be "in-network" with different insurance companies. Not all doctors are signed up with all insurance networks or plans within those insurance networks. If you change insurance or insurance plans, your current doctors may not be in-network. This means you must find new doctors or pay out of pocket unless you are lucky enough to have out-of-network coverage...
Out-of-network coverage: Some rare plans still provide coverage if you go see a doctor or receive treatment out of network. However, this is very rare nowadays.
Prior authorization: If your doctor prescribes a test, procedure, medication, or other treatment, it often needs to go through a prior authorization process. This means the insurance company reviews what your doctor suggested and decides if you are eligible for that care. If the prior authorization is denied, which happens frequently because insurers are looking to cut costs, you enter an appeal process, which can take weeks or months. While you are going through this appeal process, you do not receive the prescribed treatment or medication unless you pay for it yourself.
Self-pay rates: If a prior authorization is not approved, or if you see a doctor who is out of network, you will be paying self-pay rates. You would think that this would offer a discount. But often it does not! Medical providers negotiate discounts separately with each insurance company they are in-network with. But an individual is NOT ELIGIBLE for those discounts. For example, the place where I got physical therapy after hip surgery charged $290 per session for self-pay but insurance only paid the facility $190. When my insurance company decided they were going to stop paying for physical therapy because I wasn't getting better fast enough, I had to negotiate self-pay rates in order to continue treatment. I asked if I could pay what the insurance company paid. The facility said no. Eventually, I was able to negotiate a deal with the billing department to lower the cost to $70 per visit (what my copay was at the time). But this took several months and, in the meantime, I was still accruing thousands in medical bills that were not covered by my insurance. The only reason I didn't have to pay those thousands was because I kept pushing and pushing.
Uninsured: If you're uninsured, you are stuck negotiating self-pay rates. Sometimes, this can work out, depending on your local providers. But often, if you have a serious illness, treatment may simply be too expensive—as in tens of thousands of dollars. You may go bankrupt paying for your medical bills. You may be sent to debt collections. You may just not get treatment.
I have to admit, even writing all of this out is stressful. In my adult life, I have had insurance that was bad enough (high deductibles, few in-network doctors) that I did not get the care that I needed.
I was working in nonprofits for nonprofit salaries while living in New York City. Getting adequate care for my migraines was prohibitively expensive. So for years, I saw my in-network general doctor who prescribed cheaper medications, instead of more expensive migraine-specific medications, which ultimately contributed to my migraines becoming chronic.
There is a chance I could have avoided years of chronic pain if I had been able to access appropriate and thorough medical care earlier.
I'm at peace with this because I love my life now and I have many days without pain. But still. Whenever I deal with a medical issue, I feel a deep, instinctual fear that I will not be able to get treatment.
Not everyone in the US has experienced this side of the healthcare system. If someone's employer offers great insurance or if they don't have chronic conditions that need specialized treatment or if they have lots of money, they might not have experienced any of what I did. But for the rest of us, especially those with chronic conditions or other ongoing care needs, getting healthcare can be hard and scary.
So, when Marco and I decided to move to Italy, I was both excited about living in a country with public healthcare and trepidatious about navigating a totally new healthcare system.
Would I be able to get the same medications that currently help reduce my migraines?
How much would the medications and specialist visits cost?
Would there be other, better treatment options available? My US headache specialist hoped so!
Would I be able to navigate chronic illness in a second language?
These are lot of big questions especially if you've had healthcare challenges before. I told myself that we'd have a while to sort it all out. But my neck had other plans entirely...
A Strange New Symptom...That Turns Out to Be Old
My new neurological problem started about 10 months ago: my right arm and hand started going numb and tingly. Kinda weird!
In August 2022, we had a new insurance network. So I had to go to a new primary care physician for an annual check-up and to establish care. While there, I mentioned my arm/hand numbness and my neck pain (which I've had forever and which I gave up trying to find much treatment for because it wasn't as bad as the migraines and since doctors told me to just get a massage).
This new primary care doctor thought there could be something more going on though. So she gave me a referral to a new in-network neurologist and a cervical spine MRI. Sounds great and efficient right?
No. It took three months of fighting for the insurance to approve the MRI. Once I had the MRI, I had to wait another four months for an appointment to see the neurologist.
I saw the neurologist in February 2023. The neurologist read the radiologist's report on my MRI but did not look at the scans themselves.
Based on that, I got the news that my neck pain really wasn't normal. I have foraminal stenosis and a couple of other issues that are starting to affect some of the nerves going to my right arm and hand. The biggest issue to worry about is maintaining function and preventing permanent nerve damage.
My symptoms were intermittent at the time. The doctor said I wasn't anywhere near needing surgery, but that I should do physical therapy and see what happens. I asked if there was anything to help the neck pain, and the doctor said no, not really, sorry.
Because of my insurance network, there were no other doctors available who could give a second opinion unless I wanted to pay out of pocket (remember those self-pay rates??). So, I went to an in-network physical therapist and hoped it didn't get worse...
Establishing Care in Sicily Before Residency
Well, I wouldn't be writing this post if everything had gone perfectly!
A few weeks after we arrived for this stay in Sicily, my symptoms suddenly got much worse. I have no idea what triggered it. But for a week or two I could barely work at the computer. I tried every possible adjustment—mouse wrist rest, keyboard wrist wrest, using my left hand instead of my right hand for mousing, ergonomic mice, wrist brace, sitting in different positions, and on and on. Nothing helped. Then, pretty soon the tingling in my arm turned to burning pain.
That was it. I was done. No way was I going to add yet another type of chronic pain to my life.
I had no idea how I would navigate the Italian healthcare system, but it didn't matter. It had to be done.
So I braced myself for dealing with healthcare in a new country. Would it be as difficult as in the US? Would it be better? Worse? Would the stories about healthcare in the north of Italy compared to the south be true? How much would all of this care cost?
I would soon find out.
MRIs and Neurosurgeons
One of the amazing things we've found here in Melilli is the incredible kindness, generosity, and warmth of the people. So when I needed to seek medical care, I reached out to our friend, neighbor, and cousin, Rosanna.
While I'm not on the national healthcare system, thanks to Rosanna I learned that alongside the national system, there is also a private pay system. If something is urgent but not an emergency, you can book appointments with doctors and facilities in the private system.
Rosanna got a personal recommendation for a neurosurgeon who works in both Siracusa and Catania (where he's also a professor!). The neurosurgeon had office hours each Monday afternoon for private patients. But first, I'd need to have an MRI that the doctor could view.
I was hesitant to get a new MRI because the cost in the US can be thousands of dollars. But here I could get a cervical spine MRI for 152 euro with no referral and no prior authorization needed. It seemed a small price to pay for a second opinion.
Within a week I had an appointment for a cervical spine MRI. Rosanna took time off work so she could accompany me to the MRI appointment. She explained how to pick up the CD of my scan when it was ready and showed me how to find the neurosurgeon's office. Together, we made an appointment with the neurosurgeon for a week and a half later, giving me plenty of time to get the MRI from the imaging center. The cost would be 220 euro for a new patient, in-person appointment with the neurosurgeon.
As a caveat, I was seeing this specialist as a private pay patient, not through the national health system. I understand that wait times to see specialists through the national health system can be many months. Which is where the private pay system helps fill the gap. Rosanna also explained that, as long as you have receipts, you can get partial reimbursements for your out-of-pocket healthcare costs when filing Italian income taxes.
After all the years of fighting and fighting to access care, I couldn't quite believe this was real.
Taking Pain Seriously
The day before the appointment with the neurosurgeon, I started to get nervous. I wasn't just worried about what the doctor would find or recommend, I was worried whether he would have any treatment options. I kept thinking back to the neurologist who had been so dismissive. I thought of all the times I'd tried to find a doctor to help me with neck pain and been told to "get a massage."
I don't know how it is in other countries, but in the US many many doctors are dismissive of pain, especially women's pain. Research has consistently shown significant racial biases and gender biases in how pain is evaluated and treated. Individual stories—including my own—back this up. This can lead to delayed or lack of treatment, with often serious consequences.
Suffice it to say, I was a ball of nerves. And that's not even considering that I figured the appointment would be all in Italian!
Marco's cousin Santino rearranged his work schedule so he could accompany us to the appointment and translate as needed. So I showed up with a real entourage.
And then, the moment of truth. My entourage and I were called in for my appointment.
The Neurosurgeon Consult
To all of our surprise, the neurosurgeon spoke perfect English. He was immediately kind and thoughtful, asking me in detail about my symptoms. He popped my MRI CD into his computer and gave it a close review before glancing at the radiologist's report.
He found similar issues as reported on the MRI in NYC: foraminal stenosis was pinching the nerve at the C6-7. But he also found more disc involvement.
He did a thorough physical exam to test my reflexes and sensation in both hands and arms. I pointed to a spot in my back where I sometimes also get a tingling sensation (a symptom dismissed by a primary care doctor several years ago) and he immediately said, yes, that's the same nerve.
After reviewing everything carefully, he said, "You're borderline for surgery. Let's do everything we can to avoid it, okay?"
Then he outlined a three-week medication treatment protocol we would start with, after which we'd do a follow-up to see how things were going. He then wrote up this protocol in a letter, along with the medications I would need. He printed out the letter and handed it to me. This is what I would take to the pharmacy. As I write this, the follow-up is still two weeks away.
I honestly wanted to cry right then and there. Not because I was worried about needing surgery at some point. But because this doctor seemed to care. He listened to me. He suggested treatment options. He didn't send me home and say, "Come back when it gets worse."
The Pharmacy
In the US, when a doctor prescribes something they generally send a digital prescription to your designated pharmacy. It can take a couple hours, sometimes a couple days, for the pharmacy to fill the prescription.
If your prescription is not part of your particular insurance plan's "formulary," then your doctor has to submit for a prior authorization (which can take a couple of days to several weeks or even months if you need to appeal). Alternatively, the doctor can try calling in a different prescription. When you pick up the prescription, you pay your copay, which varies based on the type of medication and your insurance plan.
I had no idea what to expect of a pharmacy in Sicily!
When we got back to Melilli, Santino drove us by the two pharmacies in the historic center. They were both closed for the midday break and would reopen in the late afternoon. Back home, Marco and I waited a few hours until the pharmacies reopened then headed out with the letter from the doctor.
To get the prescriptions, I simply walked into the pharmacy and showed the pharmacist the doctor's letter. She grabbed three small boxes of medication from the back. Since I am not on the national health system yet, I paid for all three out of pocket, which was 27 euro. With that, I walked out with my medications in hand. It took all of three minutes.
What's Next
I'm clearly going to have a lot of first-hand experience with Italian healthcare in the future. Once we're residents, we'll get on the national health system. I'm learning from friends and relatives here that many people tend to use a mix of public and private care, and I expect we will end up doing the same.
As we were planning our move here, healthcare was one of my biggest worries, which is why I decided to write this post and share my experiences. And yes, it's only one person's experience with one condition.
But if you're like me, hearing the details of how someone else navigated something complex—whether it's buying a house in Sicily or getting urgent but not emergency medical care—is helpful. It's one of the reasons we started this blog! So I'll be sure to keep sharing updates about how things go and what I learn about healthcare in Sicily.