As many Americans head towards retirement, and the sandwich generation are taking care of kids, as well as their parents, we learn more about Trusts in all forms. Estate trusts leave yearly income to relatives lucky enough to inherit it. There are some things in life that are necessary, costly and expensive but they shouldn’t require a trust fund to pay for them. Of what am I speaking?
March is Endometriosis awareness month. 1 in 10 women, or 10% have endo and about $10 million in research is done each year, 10% of the population has diabetes and $10 Billion is set aside for that research every year. Of course, diabetes affects men as well as women. There’s the rub. As a woman who has had endometriosis since I was 17 I’ve gone through 30 something doctors specifically for this disease. I’ve traveled over states, and hundreds of miles to find the right answer, the right treatment, the right understanding. There is no cure. There are many treatments, but one in particular is shrouded in false information from its maker and can cause several nasty side effects although many gynos push it as they get paid from the maker to do so – Lupron. Good skilled surgeons, doctors who know how to treat this disease are few, and far between.
The so called “specialists” who treat the disease with excision surgery are a handlful in this country. There are several in New York City but most do not take health insurance. The costs for such a surgery average $20K and up. There are many women who pay of pocket for such surgeries. It’s normal with this disease to have several surgeries over the course of your lifetime. Sometimes you can get your insurer to cover out of network costs but it’s appeal and lots of work to get there. Nothing is certain but in network care most of the time. Private practice practitioners who will work out of a few different hospitals say that this is the case because they take longer in surgery, do more, than those who do take health insurance and most insurers will not cover that. Sadly, no doctor is perfect and those private docs make mistakes from time to time, and repeat surgeries become necessary. That’s right – you pay out of pocket yet again. No problem for the trust funders, but a problem for everyone else. When you find the rare specialist who does take insurance and is known for excision as well as robotic surgery, which is now the preferred surgery method, there are still out of pocket expenses. Insurance doesn’t cover every medical charge, co-insurance can be as high as 25% so even after coverage, the patient is left with a five figure bill to pay on top of monthly premiums and deductibles. This has got to change. Women’s health has long been the long lost cousin of medical research dollars.
If endometriosis were somehow a man’s disease, there would be 100 men on the floor of Congress waving bills for research funding to find a cure. I find myself facing another, 6th, surgery at the end of this month, one I expect to be my last! Doubling over randomly in the past year due to sudden groin pain while walking, standing, sitting and sometimes even at doctor appointments has led me to this decision. Women’s health deserves as much attention as men’s health. Spread the awareness.