THURSDAY NIGHT IS HEALTH CARE CHANGE NIGHT, a weekly Daily Kos Health Care Series.
*** SPECIAL FRIDAY NIGHT EDITION ***
I’m lucky to be alive. I’m a 53-yr-old woman who has been without health insurance for most of the last 18 years. During that time, I developed several medical conditions, some potentially fatal. Yet, because of a few sympathetic doctors, loving and generous family members, and publicly-funded or charitable programs, I’m still here to write about my experiences. I know that many others have not had my good fortune.
If you’ve read my other diaries, you know I usually don’t write about myself and I usually approach my subjects with snark. I laugh to keep from crying. However, this time I was asked specifically to write a serious and personal post. I hope those who have insurance get a sense of what it’s like not to and those who don’t pick up a valuable tip or two. I invite readers to share their stories and suggestions in the comments section.
In Part 1, I relate the background of my story. In Part 2, I will reveal the rest of my story, starting with the onset of my medical problems.
My story is so closely linked with that of my late husband that it is impossible to tell one without the other. He died young in 2003 after being terribly ill for eleven years. He had medical insurance for only five of those long years. It was while taking care of him that I met those wonderful doctors who improved the length and quality of his life and probably saved mine. At the same time, I was learning a bit about finding free or affordable health care, a sort of "practice run" for my future health problems.
I also have two sons. They’re fine now, but both suffered chronic ear infections. Additionally, one had asthma and the other had persistent stomach problems. Thankfully, both were covered by PACHIP (which was a precursor of and is now part of the SCHIP program) most of their lives. I cannot imagine what I would have done or what might have happened to them if they hadn’t. One has been out of college for a few years, is working full time, and has no health insurance. The other will be off to college next year, where he will be dependent upon whatever minimal health services are offered by the university. A second generation of nightowls without medical coverage!
About 20 years ago, my husband and I decided to move to CA In search of a better life for our family. He worked construction, which was booming in CA and busting in PA at the time. I got a transfer and promotion to the LA branch of my company. Unfortunately, we arrived there shortly before the CA economy tanked. I lost my good job (with benefits) in a sudden and nationwide 40% "reduction in forces." I was unable to find any other similar position. Roughly two years later, my husband lost his job (and benefits). We were stunned. I was eight months into a difficult pregnancy and I had a young son. We were jobless, uninsured, and thousands of miles from home. We packed up a U-Haul and drove cross-country back to the place we were born.
Thank goodness we did! I had a tough labor and delivery and I was sick for quite a while afterwards, made worse because I couldn’t afford proper follow-up care. I was finally able to go back to work, but my new job didn’t have benefits. It took my husband even longer to get back to work again. For a little while, we had medical coverage through his union.
Then, not long after the birth of my second child, my husband was unexpectedly diagnosed with a condition so serious that his doctors told him he must stop work immediately and that he would never work again. We were without jobs and health insurance again, and this time facing some extremely serious medical problems.
But, at least we had friends and family members nearby who were willing to help and we were in familiar territory. We had figured on staying with my dear late mother-in-law for only a few months. As fate had it, we ended up living with her for six years while we struggled and waited for my husband’s Social Security Disability to be approved and his Medicare to go into effect.
Soon after my husband’s initial diagnosis, we were informed that he needed surgery right away. We were also told that it would cost at least $100,000! We had no idea what we were going to do.
I shared my problem with my friends at work. The next day, one brought me a recent Wall Street Journal article about the Hill-Burton Act, a federal program started in 1946. With Hill-Burton, hospitals receive federal loans and grants in exchange for providing a certain amount of free care to needy individuals. I had never heard of it before, but I immediately called the hospital where my husband was scheduled to have his surgery. We qualified, and Hill-Burton covered every cent of my husband’s first surgery to the tune of $156,000! A few years later, my husband needed another major surgery that cost $56,000 and Hill-Burton picked up the tab again. (His third major surgery cost close to $200,000 and was paid for by Medicare.)
In addition, a staff member at the hospital billing department gave me another wonderful tip. She said that, although Hill-Burton has nothing to do with doctor bills, if I called the doctors and told them that we qualified for Hill-Burton, they might reduce their charges. They did, and in a big way! Some forgave their bills completely and others reduced them significantly. Altogether, I estimate I saved at least another $25,000 on the two surgeries because of that.
When my husband first became ill, his medications alone were approximately $1,200 per month. These, along with his doctor bills ate up most of my salary. We still failed to qualify for Medicaid. I was told we would have had a better chance of getting it if we weren’t living with my mother-in-law, because her salary was included in our income. We couldn’t afford to move out on our own.
After nearly five years, my husband was granted his disability benefits. Medicare came later still. His health stabilized a little and we finally got our own place. At that point, my husband’s prescriptions cost as much as $1,800 per month. (This was before Medicare Part D.)
Samples and patient assistance programs cut our monthly medication costs roughly in half. We battled to hold onto our mobile home, pay for drugs, and keep up with co-pays. We also faced rapidly rising costs for my husband’s Medicare HMO and prescriptions. Co-pays were skyrocketing. For example, the co-pay for a trip to the ER increased fro $0 to $25 to $50 to $500 in four years! Then there were the uncovered medical needs, like the hospital bed he eventually had to have.
For the first time in my life, I got a credit card – and then another and another.
For the next five years, I juggled as many as one full-time and two-part-time jobs at once along with occasional periods of unemployment. By then, I hadn’t seen a doctor in a decade. I didn’t have the time or the money for that. I still had no health insurance. I was beginning to feel quite run-down and I was starting to have some medical problems of my own...