My name is John. I am 51 years old and have been living with HIV for approximately ten years now. I worked in the computer software industry for over 20 years before becoming disabled by AIDS six years ago. I began taking HIV medications back when a cocktail was still an alcoholic beverage and the only drug combination was AZT and AZT.
When my CD4 count reached 100, my doctor and I decided that it was time for me to stop working and go on disability. At the time there was no viral load test, and 100 T- cells seemed like quitting time. Since I had always worked for corporations, I had disability insurance. The private policy combined with Social Security disability paid seventy percent of my then-current income. I was also able to keep my health insurance through COBRA at a cost of $230.00 per month. When I did all the math, it seemed like I would be OK, and the bottom line was if I wanted to stay 'healthy' and play the odds that someone might find a better way to keep me alive, I really had no choice at all.
Life went on for the next two years, my CD4 cell count reached a low of 60, and I was offered entry into a trial for Epivir. Within a short period of time I had over 200 T-cells and things were looking up. At about the same time my COBRA coverage was expiring, and I was becoming Medicare eligible. Since Medicare does not provide prescription drug coverage, however, I needed to obtain my own health insurance. I did my research, talked to friends and AIDS service organizations and after much stress and anguish purchased an HMO policy with a point of service option at a cost of $300.00 per month. In addition to the increased cost, I would no longer have dental and eye care and also would pay an annual deductible and co-payments on prescriptions, as well as an extra $1,000.00 deductible if I decided to go out of the HMO network for medical care.
Taking a closer look at my medical expenses, I found that in 1994, the last year I worked, I had $2,527.00 in out of pocket medical expenses. In 1995 (the first full year I did not work) these same expenses totaled $6,750.00. My medical expenses on my 1998 income taxes totaled a whopping $9,634.00. These expenses are the cost of my insurance plus co-pays and medical treatments not covered by Medicare or my HMO. My pre-tax income in the same period has increased by $1,344.00 per year.
How can I be spending so much money on medical care? Looking at my expenses so far for 1999, my current premium for my HMO is $364.00 per month. Medicare premiums are $45.50 per month. Doctor charges not covered by any insurance are $300.00, and my current drug co-pays are running between $50.00 and $70.00 per month.
What's worse is there seems to be no end in sight to the increasing cost for an individual who becomes seriously ill and is forced into the direct pay insurance market. In New York State, insurers do not have to apply to the state for rate increases of less than 10%, so every year my health insurance goes up between 9% and 10%. This does not prevent insurers from seeking higher increases from the state; in 1998 my insurer attempted to raise my rate by 69.3%, but was denied the increase. Other insurers were granted increases this year of up to 28%. Although I did not receive this type of an increase, my insurer has recently informed me that they are switching me into another plan with a smaller network of doctors, specialists, and hospitals in order to keep costs down. This in effect means that I am paying more than the cost of a traditional HMO for a smaller network of doctors and hospitals that pay providers less money for services. The next logical question is: Why don't I just change insurance plans? The answer is that the law states that once a person is a Medicare recipient they cannot buy or change insurers other than buying Medicare HMOs, an option that will not give me the prescription drug coverage I need.
The news on the Medicare front is not much better. I have read that premiums for Medicare are expected to double to $105.00 by 2009 from the $45.50 we are now paying. Medicare reform has also become a 'hot' issue. After the National Bipartisan Commission on the Future of Medicare failed to deliver an acceptable plan to save Medicare, President Clinton promised to deliver such a solution. The highlights of the President's plan include, raising premiums, reducing the percentage of payments on laboratory tests from 100 percent to eighty percent, and a prescription drug plan that after premiums will pay a maximum annual benefit of $700.00 on the first $2,000.00 of prescription drugs in the year 2002. My estimated current drug costs are in excess of $1,000 per month.
Every month I sit down with my bank statements and my bills to see if I have made it through the month without tapping into my life savings, the money that will eventually all be spent on my health care. My housing and health care costs are rapidly each approaching one-third of my pre-tax income; that leaves me with one-third to pay Federal, State and Local taxes and live on. No longer living the American dream, I am living the American nightmare.
So where does all this leave me? The solution that I have recently begun to envision would be the ability to return to the work force, get group coverage, and forget all of this stuff. However, I am not one of the lucky people who have had miraculous results from protease inhibitors. An inventory of my medicine chest this morning shows that I am currently taking seventeen prescription medications. It breaks down to five HIV drugs, four drugs to handle side effects caused by the HIV drugs, six drugs for HIV related conditions, and two drugs for what will hopefully prove to be a temporary condition; however, we are waiting for lab tests on this one. I am currently experiencing problems with loss of appetite, insomnia, and neuropathy, and I never feel really comfortable unless I know I can get to a bathroom in about thirty seconds. I feel like I am less than the ideal candidate for a job at the moment.
The other nagging problem about returning to work is that my private disability insurance, which provides approximately two thirds of my income, will drop me when I earn seventy percent of my disability income, that translates to sixty percent of my income of six years ago. To make matters worse, once this coverage is dropped it is gone forever, so if I work for a month and become sick, they are no longer responsible. Since it can take up to five years to qualify for full disability coverage on a new job, I am feeling less than secure about this entire process.
We have serious problems in this country with health care: People work hard, pay taxes, and insurance premiums believing that if anything ever happens to them their benefits will be there to take care of them. In reality, two years after becoming disabled, your group health insurer dumps you and you are left to fend for yourself. If that is not enough, you find that Medicare only covers some of your medical expenses so you need to buy supplemental coverage, all of which is much more expensive, and covers less than your group coverage did.
Health care should not just be for the rich and very poor: It needs to be for everyone. I believe in insuring every person in the country and creating a large risk pool, where the healthy offset the expenses of the sick, a basic concept of insurance that we seem to have lost sight of. We would see the state of health change. People would stay healthier, because they would not wait to treat illness until they have to go to emergency rooms to seek treatment, a very expensive way to deliver health care. People would not be denied medical treatments because of expense that affects the bottom line on the balance sheet of an HMO or an executive's bonus. People would not have to worry all the time about being denied care or loosing their insurance.
We need a national health care system in this country. I know that many people think this is impossible, and some have even questioned if I should add reduced mental capabilities to my list of HIV problems for even thinking such a thing. But after dealing with AIDS, and managed (mangled) care for the past ten years and surviving, my dreams for a better health care system are all I have left.
Back to the GMHC Treatment Issues May/June 1999 contents page.