I guess you could call me one of the lucky ones. I’ve been extremely fortunate in my life in many ways. Two of those instances are the facts that I’ve lived in many different places and that I’ve always known about lupus.
Since before I was born, my Mum has had lupus. I was born in England and some of my earliest memories are of visiting St. Thomas’ Hospital in London for her to see specialists. This is going back some 40 years, so they’ve been working on this horrible disease for a long time.
Just before I hit my teens, we moved to California. That’s when my joints started to ache, it took much cajoling of doctors to get them to do a simple test to see if I had lupus as I was exhibiting many of the symptoms. Bearing in mind this was 30 years ago, so lupus still wasn’t on the radar in the USA. I was, however, diagnosed with Juvenile Rheumatoid Arthritis.
20 years ago, I moved back to England after living in various places and learning that I had Antiphospholipid Antibody Syndrome in Bermuda after I developed a DVT.
As soon as I arrived in England, I had to set up various appointments finding a GP and wait for their input to see the specialists necessary to monitor my condition. While sometimes frustrating for wait times, the NHS were amazing at helping me find a doctor and I was soon under the care of a fantastic hematologist at the Royal London Hospital. My INR was carefully monitored and after 9 months the specialist diagnosed me with my first pulmonary embolism. This was a scary time and he immediately called the hospital and advised them that I needed to be admitted.
I made my way to the hospital and was extremely frustrated that even though they knew I was coming, it took over 9 hours to get me to a bed. I wish I had known then what I know now (stay tuned to find out what that is!). It was during this 2 week stay in the hospital that my lupus diagnosis was finally uncovered. This again required a new specialist and I knew exactly where to go. I visited the Louise Coote Lupus Unit at St. Thomas’ Hospital and was pleased to find a welcoming community and fantastic staff, nurses and doctors all ready to help me. It was also during this time that I was experiencing miscarriages and difficulty carrying a pregnancy.
Our son Sean was born 11 weeks premature at St. Thomas’. In total he spent 15 weeks in the hospital, during that time he was monitored 24 hours a day and I was seen and monitored by doctors and specialists.
In 2005, we moved to Florida as part of a job move. During all the pre-move paperwork, the health insurance application forms arrived. Since I never had to think about health insurance before (as I was covered under my parents insurance when I lived in the US previously), my husband and I went through the forms and submitted them listing all of our history, including Sean’s premature birth. The insurance company came back and requested proof of previous coverage. We scratched our heads a little since we were covered by the NHS in England and in the end we sent copies of our NHS records to show “proof of prior coverage.”
As a result, the health insurance agreed to cover my lupus and APS and Sean’s prematurity is considered a pre-existing condition – if we hadn’t had the NHS records, we would have been denied coverage.
In 2007, Andy was laid off from his employment and this meant that we would shortly lose health coverage, so one of us had to find employment that offered health insurance. At that time if you had a pre-existing condition and any lapse in coverage, an insurance company could deny covering you at all. We were offered an interim health coverage plan at over $2000.00 per month, that’s unsustainable for any family, especially as that would only cover the actual cost of insurance. In addition you would then have to meet deductibles, co-pays and prescription costs. As a result, I went back to work for a short period of time and received health insurance. Now we are covered by a company insurance plan and still have to meet the out-of-pocket costs as our chosen insurance plan states.
In the UK, I wouldn’t have to worry about costs of treatment. I never received a bill for being admitted to the hospital or for the 15 weeks that Sean spent in the hospital. Here in the US, I know of families who had to find ways to pay for their preemie to stay in the NICU when their insurance coverage ran out. Waiting times for hospitals and/or doctors’ appointments in the UK are frustrating, but you never have to worry about the cost to you. I have easily been charged over $5000.00 for one visit to the Emergency Room in the United States.
In both the US and UK, if you find the right doctors, they are knowledgeable and can help you find the right diagnosis and treatment. In both countries I have experienced the opposite as well. I see and read constant testimonials through the Lupus Foundation of people who have to see more than 5 doctors and spend YEARS awaiting a diagnosis. The prevalence of Lupus is increasing, that is because more and more people are being educated about the disease, but still not at the rate that we would like.
Both countries also show progress in different areas. In the UK, I was able to buy and use a home INR monitoring machine so that I didn’t have to go to the hospital every week for a blood test. When we moved to the US, they didn’t support that until 8 years ago. When we moved to the US, I was asked by a specialist if I had an IVC Filter to stop blood clots. In the years since the 15 DVTs and 4 PE’s, no one had ever mentioned that was a possibility. We also had the introduction of the Benlysta infusion for the treatment of lupus.
My biggest gripe with the US are the insurance companies. This has been eased a little by the introduction of the Affordable Care Act or ‘ObamaCare’ which protects patients with pre-existing conditions and does not allow more to be charged for these patients.
As an example, when Benlysta was first introduced, the insurance companies ran the show in terms of how much they could charge for each treatment depending on your policy. One treatment costs $35,000.00 – some insurance companies were charging people 75% of this cost. Again, unsustainable for most people. Many times a doctor will order a particular test or prescription and the insurance company can deny it or request additional information, all delaying treatment.
I had been on Benlysta for 2 years when we had to change insurance companies. Because my labs were stable due to the treatment, the new insurance company initially denied treatment to continue. Luckily my doctor advocated for me so vehemently that they agreed to continue treatment.
With the new government administration in the US, the threat to patients with pre-existing conditions has returned. So, I’m waiting to see if I will have to worry about that again, but we’ll cross that bridge when we come to it.
I’ve learned there’s pros and cons to living in both places – there’s never going to be anywhere that’s perfect. I just have to keep up the good fight wherever I am.