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. 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 related the background of my story. In Part 2, I am revealing the rest of my story, starting with the onset of my medical problems.
After battling illness for eleven years, my husband’s condition had begun to worsen rapidly. We knew he probably wouldn’t live much longer. His doctors asked if I could afford to quit working to take care of and be with him. I couldn’t.
A few months before he died, one of his doctors insisted that I come in for a free check-up. She said she was worried about me and that I didn’t look good. She discovered some problems right away and she provided me with sample pills. As my health has declined, she has continued to see me at little or no cost and to give me drug samples whenever she can. When she can’t give me samples, she tries to give me coupons to use at the pharmacy. This arrangement has continued for almost six years.
My husband died in early 2003 at age 52, one day before I turned 48. We had been together nearly 30 years, married almost 28 of them. Happy birthday to me...
Using my paycheck, my Social Security Survivor’s Benefits, my husband’s small insurance policy, and my small savings, I was able to get by, and I even managed to pay off numerous bills and loans leftover from my husband’s illness. But, I wasn’t making much headway with those credit card bills. And, every year, I always seemed to be about $20 over the monthly limit for Medicaid.
Late in 2003, I became much sicker and was suddenly diagnosed with high blood pressure, high cholesterol, and diabetes. My faithful doctor loaned me a blood pressure meter and a glucometer. She provided me with a few hundred testing strips, lancets, and samples of the drugs I needed to treat my three new conditions.
My doctor directed me to the Visiting Nurse Association, where I qualify for free flu shots ever year because my diabetes makes me "high risk." She told me about annual free blood testing organized by a fraternal organization in a nearby town with the cooperation of a prominent medical lab. She pointed me to the free breast cancer screening held at the local hospital every Mother’s Day weekend and co-sponsored by the Susan G. Komen For the Cure Foundation and the American Cancer Society. This in turn led to a free Pap smear that year, and every year since. It also led to me having a biopsy (thankfully benign) I needed at no charge. The nice OB/GYN who did the biopsy later treated me for several other problems at reduced cost.
My family doctor also referred me to an understanding ENT for treatment of my right ear. I had lived with painful and chronic ear infections for years. I learned that I had an infection that had gone so deep and been so severe that he said I was in real danger of a deadly brain infection. I also had a large cholesteatoma (like a tumor) in that ear, which he removed. And, I had extensive damage to my eardrum and the bones of my middle ear. I was forbidden to fly. My ear hurt like crazy, but I had no idea that I was a ticking time bomb!
The doctor also said I would need to see him weekly for a long time, gradually getting to the point where I would need to go in only every three months - forever. When he said he would treat me for only $10 per visit, I burst into tears! I have been seeing him for more than four years. I am pleased to report that I haven’t had an ear infection in months and that I have been given permission to fly again. However, I am virtually deaf in that ear now and plagued 24/7 by tinnitus that varies from bad to worse.
Six months later, I was further diagnosed with arthritis, fibromyalgia, chronic fatigue syndrome, and depression. More doctors, more drugs, more tests. I knew enough to apply for Hill-Burton funds for my out-patient testing. By the end of 2004, I was no longer able to work.
I applied for Social Security Disability and was denied because I "didn’t provide enough evidence of my conditions." I saw a lawyer, who said there was no sense in filing an appeal unless I could give Social Security more test results and reports from specialists. Of course, I couldn’t. I didn’t have the money.
Horrible teeth run in my family. I never had dental insurance and I could never afford the right kind of care, enough care, and timely care. Nevertheless, I paid $1,000s over the years playing "keep up" with just the very worst dental problems I had. I had to have four impacted wisdom teeth pulled, two root canals done, and much more.
All for naught... At the ripe old age of 48, I found the cheapest dentist I could to pull every tooth I had left. This cost $2,600. Then I went to a "Dentures R Us" kind of place to get mine at less than half the going rate charged at a dentist's office. $1,100.
The so-called "cheap" dentures never fit right. They slip when I eat and occasionally fly out when I'm talking. (Yes, I've had them readjusted several times - $65 each time.) I get bleeding ulcers and blisters from them. My jaws ache whether the "falsies" are in or out. I now only wear them when I go out. Either as a consequence of wearing those dentures or of not wearing those dentures, I have TMJ and arthritis in my jaws. (This is possibly related to my fibromyalgia, too.)
Last year, I lost my Survivor’s Benefits when my son turned 16. (His continue until he’s 18.) I finally had to declare bankruptcy. Luckily, I was able to hang onto my mobile home. At long last, I was eligible for Medicaid and food stamps. I reapplied for Social Security Disability because I would be able to provide the evidence needed.
Boom! Suddenly, I was seeing old and new doctors or having tests done almost every weekday. My regular doctors had a long list of things they wanted done and specialists they wanted me to see. I was evaluated for jaw surgery, under consideration for stomach surgery, and scheduled for ear surgery. I underwent a long-overdue gynecological procedure. I got new glasses. I had a few weeks of physical therapy. I began seeing a psychologist and a psychiatrist for depression. All my prescriptions were covered. I was entitled to free medical transportation. My doctors were being paid somewhat closer to their regular fees – and not by me for a change.
While I had Medicaid, the oral surgeon recommended three things. The first is surgery for my TMJ. My TMJ is "not bad enough" for ANY insurance company to pay for it - that is, if I actually had any insurance. $10,000+. Second, insertion of posts to hold my dentures in place because my ridges were so severely damaged by years of improper/no dental care. "NEVER" covered by dental insurance. $10,000+. Finally, new dentures from a "good dentist" who specializes in posts and "problem fits." "Might" be partially by "some" dental plans. $5,000+.
Six months after that, my Social Security Disability claim was granted!
That’s the good news...
The bad news is that I immediately lost my medical insurance. I am not eligible for Medicare until February of 2010. Because of my pre-existing conditions, the only insurance I can get is expensive and doesn’t cover those conditions. And, my Social Security benefits are again about $20 a month too high for me to receive Medicaid.
Boom! Just as suddenly, I was back to square one as far as medical care goes. In my case, when Medicaid paid for something, it covered everything. But, it moved very slowly on approving things and denied coverage often. I had several procedures and tests under appeal. Pending tests and surgeries have been canceled. I simply ran out of time. Questions hang in the air about two very serious conditions I may have. There they will stay, too, because the tests involved in finding the answers run around $10,000.
My long-suffering physicians are back to their tiny payments. One of my new doctors has cut his fees in half. Another isn’t charging me at all. The others, I just won’t see for now. Conditions newly-diagnosed in the brief time I had insurance mean that I need more drugs and routine blood work than ever. My doctors are again helping me to apply for pharmaceutical assistance programs and giving me samples when they can. If I had to pay full price for all of my meds, it would be $1000 per month. That’s just not an option. Chances are, I will be doing without them often. There will be no more physical therapy.
The oral surgeon said I will need jaw replacements in the future if I don’t follow his recommendations. Ironically, dental insurance plans, Medicare, or Medicaid probably WOULD cover that surgery – if I actually had any of those coverages. The oral surgeon told me to come back when my condition gets much worse AND I have good dental insurance. If you are struggling to pay for dental care, please see nyceve’s recent diary Unaffordable dentistry and an epidemic of dental disease and the comments for priceless tips.
I am angry that all of this happened to my family. I am angry that my husband had to agonize over the cost of his care and the bills he knew he would leave behind. I am angry that his medical care forced me into bankruptcy. I am angry that I had to spend so much time and energy seeking affordable care for my husband and myself. I am angry that we had to feel as if we were begging for charity to get medical care. I am angry about the mistakes and bad decisions I made and the stuff I wish I had known at the time. I am angry that caring medical professionals must waste scarce resources helping patients without insurance. I am angry that health-related organizations must burn up their funding just trying to keep sufferers alive. I am angry that those who advised me to quit working and declare bankruptcy so I could get medical care might have been right. I am angry that the same government that classified me as disabled still won’t provide me with health care. I am angry that universal health care might have enabled me to stay healthier and work longer and that it would have made my husband's final years less agonizing and more dignified.
However, I am lucky that I have been able to keep my family together. I am lucky that I didn’t lose my home. I am lucky to be treated by some doctors who are willing to accept low – or no – payment. I am lucky that my medical conditions were not more serious, such as cancer. I am lucky that I have received as many free drugs as I have. I am lucky that the drugs I need aren’t as expensive as some that are out there. I am lucky that I qualified for Hill-Burton funds. I am lucky that a few people went out of their way to educate me about various diseases and health care programs. I am lucky that there were organizations offering free care. I am lucky that I haven’t been reduced to seeking donations to have life-saving surgery or chemotherapy. I am lucky that I have such wonderful and supportive family and friends.
All in all, I am lucky to be alive!