March 22, 2007
By HELEN UBINAS, Courant Staff Writer
First, she called to change the time of our meeting; then the location.
Twenty minutes later, she called again to cancel. There was a family emergency, she said unconvincingly.
And oh - that resident meeting she invited me to at the housing complex for people infected with HIV and AIDS where she lives? That was off, too.
Truth is, I could see where things were going well before that last call.
It was clear that she and her husband wanted to speak out about how the drastic cuts to AIDS funding stood to affect them. In fact, they were among the only family members who attended an emergency meeting at the Hispanic Health Council the other day.
They are both on disability, she said, bringing in nowhere near enough to pay for the medications and therapy her stepson needs to help fight the disease he contracted from his birth mother.
If ever there was a time to speak up, it's now. But, they were reluctant; their son's illness is still a closely guarded secret. He's in high school, she explained. He plays sports. He's popular.
"There's still a lot of shame and fear associated with the disease," she said.
It's easy to forget how fragile the lives of people living with HIV and AIDS are - what with the magical medications, magazine covers screaming about the AIDS crisis in far away places and programs here to help people with the disease.
But then the very things that make it possible for people with HIV and AIDS to live their lives disappear - and suddenly the reality rushes back into focus.
Meals - gone.
Mental health services - cut by more than 40 percent.
Transportation - by more than 50 percent.
And housing - good luck finding any. Housing was cut by more than 70 percent.
Altogether, the $4 million in federal funds Hartford expected was slashed in half because the number of new cases didn't meet the feds' new guidelines. Same with New Haven. More money is expected next month, but not enough to fill the gap.
Somebody - the state, the city - better step up and fill it. While the advocates aren't sure what to make of the numbers, they know this much: if these cuts stand, things are only going to get worse for people living with AIDS.
We've made a lot of progress in battling the disease, so much that AIDS has taken a back seat to other causes. But Connecticut, which ranks eighth in the nation in AIDS cases per capita, had the fastest rate of growth in New England in 2005. Nationally, AIDS is the leading cause of death for African American women aged 25 to 34.
So, why would we even think about taking a step backward?
The agencies that provide services to people with HIV and AIDS in Hartford have already started laying off employees. AIDS Project Hartford lost half its case managers; so now they have five managers for 300 mostly poor and very sick patients.
Now they're sitting down with a Schindler's List of sorts, trying to figure out who among the most vulnerable will continue to get help - and who will have to be cut loose.
And the boy's family is wondering what to do next. After years of refusing to admit he had the disease, their son has started to take his medication regularly; he's finally talking to a counselor.
Already, the father told me, he can barely look his son in the eye. Too much guilt from not being able to do anything to cure him, he said.
"How am I ever going to explain to him that I can't even put a roof over his head?"
Reprinted with permission of the Hartford Courant.
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