Socialized Medicine

I just had to take a break from telling my Endo story to address an issue that has become of great concern to me... socialized medicine and it's impact on my international Endo sisters (fellow women suffering at the hands of endometriosis). As a health and wellness professional and a vocal advocate for cancer patients in the United States, I find myself on Capitol Hill a few times a year fighting for better health care and insurance coverage for our most vulnerable populations, specifically people with pre-existing conditions like cancer. I have always been all about everyone having access to affordable health care. I believe that there are basic minimum coverage requirements that must be provided. I have also been very disappointed in the lack of "affordability" in the Affordable Care Act. All this being said, I have recently connected with Endo sisters from around the world through social media and the stories being shared about their experiences with socialized medicine are truly horrific!

In countries where health care is provided by the government, endometriosis patients are continuously pushed down the priority list, made to wait YEARS for diagnostic surgery, forced to accept sub-par treatments while they wait and hitting rock bottom - losing jobs, relationships, financial security and independence while they wait in painful silence! Many of these countries are creating opioid epidemics of their own by throwing medicinal band-aids at Endo sufferers in the form of codeine, morphine and the like... or not providing them and leaving my Endo sisters to live in ridiculously intolerable pain while they wait what feels like a lifetime for their turn to get superficial, ineffective treatment - only to be put back at the bottom of the waiting list when told they need more surgery.

Recent stories that have come across my Endo news feed from countries with socialized medicine are simply tragic. Take the Endo sister in New Zealand who suffered 7 years before getting her first diagnostic laparoscopy - the starting point for endometriosis diagnosis. They didn't remove the Endo then. Instead, they stitched her back up and put her back on the list for a second surgery. Pushed back months, she went for her second surgery - cancelled trips, declined wedding invitations, took time off school - waited IN THE HOSPITAL all day expecting to have the surgery to finally remove her Endo, only to be told later in the day that they had run out of time for surgery and she is now back on the waiting list. I had no idea that things like this could even happen!!!!

After 10 years of battling, another Endo sister in the UK FINALLY got a date for the hysterectomy she has been begging for to hopefully get some relief from her endometriosis... unfortunately, it's still another year away.

I've actually toyed with the idea of going to Canada for better healthcare since I live only 15 minutes from the Canadian border, but even our friendly neighbors to the north experience excessive wait times. Many Canadian Endo sisters have shared that they've undergone multiple unsuccessful surgeries in the hopes that "this one will work." Desperate, but with no other options, they succumb to surgery after surgery with inexperienced doctors who are unfamiliar with the complexity of this disease.

#CanadaWaits

The average American woman suffers nearly 5 years before finally going to the doctor for endometriosis related symptoms. Then, an additional 5 years being tossed around in the health care system - often misdiagnosed and misunderstood - is the average time it takes for that woman to be properly diagnosed according to a study by the North American Endometriosis Society. For Endo sisters in countries with single payer healthcare, you can tack on additional years of just waiting to be seen or for diagnostic surgery.  Unfortunately, in many of these countries, doctors skilled in treating endometriosis have exceptionally long wait lists for care. In the meantime, Endo sisters, desperate for relief, accept sub-par treatments that are likely doing more harm than good. Those who are able sometimes opt to travel to other countries to receive proper care in a more timely manner out of desperation....at their own expense.

All of this has made me think long and hard about how I view the grass on the other side. It isn't always greener. Is healthcare overpriced here in the United States? ABSOLUTELY! Is health insurance overpriced here in the United States? ABSOLUTELY! However, if I wanted to, I could go get my diagnostic laparoscopy done within the next 30 days. In less time than that, I have had CT scans, surgical consults, a consult with an endo specialist, a colonoscopy appointment and an appointment with a urologist.

Socialized healthcare may be "free," but it still comes with a cost. For many of my international Endo sisters, the cost is their employment, their independence, their relationships, their finances, their quality of life... They watch it all just go down the drain as they wait and wait and wait.

To be fair, many American Endo sisters also lose a lot...I, myself, lost many years of my life bed-ridden from this disease and spent money that I didn't have on medical care looking for a diagnosis which I will continue to share about on this blog. However, when you have no alternative options because of socialized medicine, it can quickly bring you to a very hopeless place which is what I am seeing a lot of from my international Endo sisters.

Considering that endometriosis affects 1 in 10 women ages 15 to 49, Endo sufferers world-wide are in a very precarious place  They still have the majority of their lives in front of them, but when they have no idea how long it will even take for them to be seen, many don't recover from the depression that living with chronic endo-induced pain creates. Suicide rates among endometriosis sufferers continue to rise. It is abysmal and unnecessary.

There needs to be MORE research, more education and training for doctors GLOBALLY and most definitely, better access to care. PERIOD.