THANKS FOR BEING THERE

Since you have a survey out, I’m taking this opportunity to send mine in and say thanks.

I got your name from my beautiful brother Jim, who died of AIDS in 1990. There weren’t many he could trust during his illness. People like you provided reliable information which kept him reasonably healthy until the end.

In Jim’s memory, I have volunteered in the AIDS community for a number of years and I regularly refer to my Positively Aware to inform and encourage people.

—Sherri H.
Grand Rapids, MI

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WHAT'S ONE TO DO?

I am an HIV-positive male in my late 50s who faced early retirement from work. I will be 60 by the end of this year and though I have applied for many jobs, I am still unemployed. My COBRA will run out by the end of this year, so I have started to search for health insurance with no success. It seems I have a “pre-existing condition.” Even though I am totally asymptomatic and my viral load is undetectable, apparently, the insurance industry couldn’t care less.

I find myself running out of options and terribly worried about my fate. I am not poor enough to qualify for federal and state programs, and I am not wealthy enough to afford to pay out of my own pocket. Illinois’ ICHIP program is prohibitive—I would be paying about $1,700 a month for insurance and prescription drugs. What is one to do?

The above situation has driven me to ponder about the following:

• Why are there no generic HIV drugs in the U.S.?
• Why do insurance companies get away with the HIV bias when there are other health conditions that require more drugs and hospital stays?
• Why haven’t I heard of any activism addressing these issues?

Does anybody have any advice?

—A.G.

Dear A.G.,

Unfortunately, you are in good company, as it is estimated that there are some 56 million un- or under-insured people in the U.S.

To answer your questions, though, there are generic HIV drugs in the U.S.—AZT (zidovudine), Videx (didanosine), and Zerit (stavudine), but they don’t make up a regimen in and of themselves, and most people wouldn’t want to deal with the side effects of AZT or Zerit especially.

Insurance companies will be able to continue to get away with classifying (and penalizing for) lots of diseases besides HIV as “pre-existing” conditions until 2014, when the “no pre-existing conditions” provision of the Patients Protection and Affordable Care Act kicks in—if it ever does.

As far as activism is concerned, there are plenty of people and organizations advocating for single-payer health care and your situation is precisely why the HIV community needs to join in.

My advice is to check into the co-pay and/or patient assistance programs offered by the drug companies—see the chart here.

Also, if you don’t already have a case manager, get one. A case manager can advise you and refer you to other resources. You might also want to check out the online forums and any support groups in your area—sometimes the best advice comes from people who have been where you are.

—Sue Saltmarsh

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