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On World AIDS Day, reflections on the Philadelphia epidemic

World AIDS Day was first observed 28 years ago Thursday, on Dec. 1, 1988 – around the time that Jane Shull began working with people diagnosed with HIV/AIDS.

Shull, who started as a volunteer, now is the longtime executive director of Philadelphia FIGHT, one of the largest AIDS services organizations in the city. She offered her perspective on the disease, globally and locally, in an interview Wednesday.

What led you to work in this field?

I think there were two issues. One is that I had friends, most particularly Bill Way, who I was close to and was involved in taking care of, who died of AIDS. Bill died in 1988. He played a major role in community development, and I was working in housing at the time.

The second issue is that I had been working in low-income, mostly African American neighborhoods, and it was clear that those communities were about to be devastated by an epidemic that they didn't see coming. The belief was that this was a disease of gay white men. I couldn't sit back and do nothing.

Could you describe the state of AIDS in Philadelphia today?

There are some good things happening now and some bad things. Among the good things, we and others are rolling out PrEP [pre-exposure prophylaxis, a once-a-day pill that prevents HIV infection among people who are at risk]. We are reaching people; we are reaching young people.

Another thing that is important is that everyone is benefiting from the new HIV drugs. The old drugs  were keeping people alive but were also making them sick. Now, that's not true. This makes a tremendous difference. If you think back 20 years to 1996, with the first somewhat-effective drugs for HIV, that year or the year before that were the highest number of deaths worldwide. Now, 20 years later, they are not only staying alive but their lives are not being interrupted by this diagnosis the way they were. You can work, you can go to school, you can have a family.

On the down side, maybe in part because treatment is so much easier, we are seeing an uptick in new diagnoses among young [men who have sex with men], probably because there is this feeling that it is no big deal anymore. [Of the 538 new HIV diagnoses here in the year that ended June 30, 57 percent were among men who have sex with men, up from 41 percent in 2011, according to the Philadelphia Department of Public Health.]

AIDS has become a disease of poverty, and I think that is essentially true worldwide. If people don't feel they have a future, they take risks in the present. Young people who basically don't believe they are going to live to be 30 are going to take a risk with sex or drugs that maybe they otherwise wouldn't have.

What are the biggest upcoming challenges, particularly with a new administration in Washington?

We are all hoping that the very large amounts of money that were poured into cure research by the National Institutes of Health will not be cut off. I think there will be a cure. It is just a matter of time. Also, the Affordable Care Act from our point of view got millions of people on Medicaid nationally, and we are all hoping that that is not going to be cut off.

Worldwide, without the support of the United States government we would be in an absolute disaster. It is important to remember that the biggest program [providing HIV drugs internationally], PEPFAR, was started by George W. Bush. So this is not Democrats vs. Republicans.

What do people need to know about HIV in 2016?

People need to know that HIV is a very treatable disease but you can't get treated if you don't know whether you have it, so it remains very important to get tested. And if you do test positive, you need to know that it is far from the end of the world. It is not the end of your life. But you do need to get to an AIDS specialty clinic and get treatment. It will change the outlook for your future.

What stands out for you as you look back over the last 20 years?

What stands out to me are the numbers of people living with HIV in spite of poverty, in spite of lack of opportunity, education, stigma . . . who did not let the diagnosis defeat them. They volunteered, became activists, took control of their lives, and took control of their disease. I don't know that we could have anticipated that.