Headlines of Tomorrow’s Positively Aware
The need for health care will always be universal
by Brett Grodeck
Everyone at the computer software company where I worked got the same e-mail: layoffs were coming. This time, I had a bad feeling. In fact, I wore a clean shirt to work last Friday in the event I got the axe. At 10:30 am that day, my boss called and I got the axe. By noon, I was being shooed out of the glass and aluminum office building with a backpack and a Trader Joe’s bag filled with papers, a few books, and a plastic cereal bowl.
Later that afternoon, I discovered that my health insurance had been terminated as well. To me, that was far more devastating. I depend on my health insurance to pay for my HIV medicine. If I had to buy the medicine on my own, it would run about $1,500 a month or about $18,000 a year. That’s a lot of money.
Having HIV isn’t cheap. I’ve had it 20 years now. For the first ten years, I didn’t have health insurance. Just out of college, I worked part-time writing for magazines and part-time as a waiter. Neither job offered health insurance. At one point, I needed an emergency surgery. Without many options, I resorted to surgery at a public hospital that accepted patients without health insurance. To me, the experience was a little barbaric.
When I finally needed HIV medicine, I couldn’t possibly afford it myself. I was scared and didn’t know what to do next. That’s when I discovered a publication called Positively Aware. Thumbing through the pages, I remember finding two Illinois state programs that were lifelines until I could find a job that offered health insurance.
One program provided private health insurance that covered everything but medications. The insurance wasn’t cheap, but it would cover doctor visits, lab tests, and any emergency surgeries. The other program was the AIDS Drug Assistance Program, also known as ADAP. It covered all HIV medicine plus a few others.
With good health care, my health improved. Feeling better, I was able to work. Needing work, I contacted the editor of Positively Aware back then, Steve McGuire. He hired me as associate editor. Now, I can say that the position was both fascinating and satisfying. I was paid to write about science and medicine just when my life depended on it.
Back then, Positively Aware focused mainly on preventing the symptoms of HIV, the long list of horrifying opportunistic infections that included purple skin cancer, blindness, and madness. Years later when I was the editor of the publication, we were lucky to be able to cover many major advances in HIV medicine by scientists and doctors. At last, it was possible to fight the true cause of AIDS: the human immunodeficiency virus.
One of the best things about working for Positively Aware and Test Positive Aware Network was the affordable group health insurance that the organization offered to its employees. This coverage allowed me to quit the state programs, which hopefully provided another person with HIV the same lifeline. Since that time and over the years, I’ve worked in many different jobs, all with excellent health insurance. In some ways, I’ve been lucky.
But as I toted my Trader Joe’s bag away from the glass office building, I realized how quickly things change. One day, I have a stable income and health care for $166 a month. The next day, I don’t have an income and health care now costs $467 month. That’s how much I will pay to continue my health insurance through a federal program called COBRA, another lifesaving program for anyone with a chronic health condition.
On one hand, I’m worried about paying the bills. On the other hand, I’m grateful to have good health these days. I figure with good health—both physical and mental—anything is possible. It won’t be easy, but I’m confident that I’ll be able to navigate the unknowns of unemployment and health insurance.
For twenty years, Positively Aware has written about the never-ending unknowns for people with HIV. So what might fill the pages of Positively Aware for another 20 years until it celebrates its 40th anniversary in the year 2029?
A cure would be great, but there’s debate about what exactly defines a cure. Without the ability to eradicate HIV after infection, the next best option is to improve HIV medicine over time. Perhaps some day, HIV treatment will be a pill that’s taken once a week or once a month. Perhaps a treatment will come out of the blue, such as bone marrow replacement with gene therapy. Who knows?
What I know is that with any advance in HIV treatment, regular people need access to it. Regular people need access to affordable and flexible health insurance that actually helps when you need it most, during the inevitable bad patches of life.
The good news is that President Barack Obama is committed to signing universal health care legislation within four years. This legislation would ensure that all Americans can get high-quality and affordable health care coverage. That’s a lofty goal, sure, but it’s worth pursuing. HIV or not, if you have a chronic health condition or depend on health insurance, now is the time to make your voice heard.
The pages of Positively Aware in the future have not yet been written.
We—readers, people with HIV, society as a whole—have the ability to influence the headlines of the future. What we think about today, we can bring about tomorrow. So I urge you, start thinking about living in a country where good health care is available and affordable to all.
Brett Grodeck served as Editor of Positively Aware from 1997 to 1998 and is the author of The First Year—HIV: An Essential Guide for the Newly Diagnosed
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